I don't have endometriosis but I have suffered from chronic migraine and when it was at its worst even non migraine days were write offs while recovering. Chronic pain is exhausting. When people can't see what's disabling you it's exahsusing to have to explain and exhausting to listen to unsolicited and uninformed suggestions of what to do to help. So I'm not going to make suggestions about what to do, you and your doctor know your body and how to help it best. Just want to validate your vent sesh. They are totally needed at times.
Look into the autoimmune paleo protocol. It greatly reduces systemic inflammation. The less plants you eat, the better. They promote inflammation. Carbohydrates promote inflammation. Eat low carb or ketogenic. A lot of people regained their health on the carnivore diet also.
SO much love Mia. I wish I could talk to you about it, it's a horrible thing. I just got the hysterectomy in the end. Halved the pain. Syneral plus HRT gave me the same result but it's expensive and HRT caused anxiety to spike. Then again, I never wanted kids. It's a HORRIBLE thing. The worst part is no one understands. Friends don't get it and they want you to be out and about and not having 'quiet time' in bed. All my friends are so bloody active it makes me ill. :) Anyway, I literally feel your pain, I know how bad it gets in your 30's just when you don't think it can't possibly get any worse. LOADS of love and gosh I could swap stories for years. So buckets of love and pain killers. You've been VERY sensible with your career and that's something I did too. My GP would laugh when I said 'I need a sedentary job' but I knew the pain was taking over. You're amazing, you're extraordinary and we can still have lives, just slightly different to the ones we dreamed of. I think we both still have pretty dreamlike lives in terms of jobs. xoxoxoxoxoxoxoxoxoxoxox
After struggling with every eating disorder known (and then some) for 24 years, and working through recovery for the last 19 months, I’m weight restored (though still gaining and far far from recovered), I look “fine” and people treat me differently now (without the concern=without attention), but I’m so not “fine”. I have peripheral neuropathy in both feet and one leg for 2 1/2 years. It’s tingling all day, all night, without a rest. No one sees it. But to be left with this when I’m fighting so hard feels cruel at times. Somehow I feel a bit less lonely knowing others understand how much harder it is going through recovery, or struggling with food issues, while plagued chronically with discouraging pain or illness. I don’t remember life before. Praying God uses this pain somehow for His glory and even somehow towards my freedom one day. Jeremiah 29:11 right? Still terribly hard every day though. Love you Mia, and everyone who posted. It takes a really strong person to get through illnesses, especially physical and mental at the same time. Remember how strong you are!!!
Thank you so much, I get it. Auotoimmune disease with no cure. Feel somewhat robbed having worked so hard to overcome anorexia from age 10-28 to now have struggled almost two decades with chronic invisible illness. It's hard because people without it don't " get" it.
Sending love from someone with fibromyalgia who feels constantly in a battle with my body. It’s sooooo frustrating especially when people say to you “oh you don’t look ill”. Well what the hell is that supposed to mean???? (sorry to vent, but its been a bad week and it’s only Tuesday!!) Anyway, sending gentle hugs to everyone on here as I’m sure we’re all in need of one. Cheryl. xxxx
Thats ridiculous! Thats like saying "you don't look like you have a migraine"... what do people expect to see? An axe wound suddenly appear on your body when you start feeling unwell?! Sorry that you have to deal with that. I know people with fibromyalgia and it sounds like such an awful and misunderstood issue to have. Hope the rest of your week is better!
I also have fibro and yes to all you said. I went to The ER a few weeks ago because the pain in my neck and shoulders was so bad. Just for them to say “oh it’s probably just your fibro.“ And sending me home with a pamphlet telling me to exercise and meditate more. UGH like yes of course that stuff does help but I wouldn’t go to the emergency room if it didn’t feel severe enough. And ended up going home just feeling so stupid (still in pain and unable to sleep) bc it’s “just in my head”
@@jenrivera5893 Sounds like an awful experience Jen. I’m having a lot of pain in my arms at the moment and I just can’t put myself anywhere that is a comfortable position so I’m sure the neck and shoulders must be exactly the same. Hope it has eased a little for you and you’ve been able to get some rest.
I’m sending you love and kindness. I also have endometriosis. Was diagnosed after I had my daughter. The fatigue is so bad! And the pain... I used to think every woman had this every month. Turns out, it’s not normal! So while I hate that you are going through this, I am so happy you are talking about it! We need more women being vocal about this. Thank you!
I have an invisible illness! Severe eosinophilic asthma, meaning I’m 22 on daily medications for allergies and injections monthly to control my bloods. But obviously I look entirely healthy, but it often causes exhaustion (emotional and physical). I have been inside now for 5 months since Covid as I am so high risk and it gets more difficult by the day, I can’t even go to work:( I think that this is the first time that my mental health has been so affected by my physical health (other than my medical trauma lolz) but it’s ‘only asthma’ as I’ve heard so so many times through my life... thank you for this space to vent😂 I hope you have some relief from your symptoms soon.
That sounds super frustrating and hard to go through. For everyone suffering from endometriosis, I am proud of you for holding on. Thank you Mia once again for spreading awareness. I'll keep this on my mind and be an advocate wherever I can.
Hi Mia, Thank you so much for talking about this. I'm 22 and I've had ulcerative colitis (UC) (a chronic autoimmune bowel disease) since I was 16. It's also highly likely that my ED (I'm now recovered yay!) contributed to/caused my UC. But unlike my ED, I'll never fully 'recover' from UC since it's a life-long condition. I have an identical twin sister but she doesn't have it so she doesn't understand. It's super hard to talk about my UC because it involves a lot of 'gross' things like colonoscopies, stool tests, taking emenas/suppositories etc. I've always felt pretty alone having this condition, even though I'm lucky I have a super mild type, because I don't know ANYONE else around my age who also has UC. Whenever I go to have medical procedures, often the wards are full of older men and I feel like I don't belong there. Anyways thanks for allowing me to vent haha Sending you love, Sophie xox
I feel your pain, albeit with different issues. My invisible illness is my IBS and I also have pain from my scoliosis. I’m at the point where I’ve lost interest in not being the person to talk about the pain tbh. It took my years to get diagnosed with IBS because my doctor didn’t take it seriously and it caused me to relapse into my ED and get to my sickest point in that regard. The worst part is that the first medication I tried for my intestinal spasms (dicyclomine) works great for me with no side effects. Thankfully I now have a different doctor who’s absolutely lovely. You’d think a doctor who was at your birth would care about your health though, right? Sometimes I wish he hadn’t retired so I had the chance to tell him why he was wrong and what it cost me.
Thank you for sharing. I am so sorry you are suffering from endo. I have severe endo as well so I completely understand. I appreciate you sharing that you had it on your diaphragm (yikes! So sorry!!). I think there is a big misconception that endo only grows on the uterus or ovaries. It can grow anywhere!! I have had it on several organs and have had several surgeries. I even traveled out of state to have surgery with a endo specialist. The hidden part of the illness is frustrating since no ones “sees” your pain. You are not alone💜
OMG Mía that sounds horrendous. I honestly have to agree with you that lots of female conditions and diseases go unnoticed due to lack of awareness and funding. Thank you for shedding light on endometriosis and sharing your experience which is so valuable and valid. You set an example and allow us, in a way, to also speak up about however we feel. Not minimize or ignore any pain: physical, emotional, mental. I admire you SO much.
I'm newly diagnosed with mixed personality disorder. No one - other than my mother - has any idea how it affects me. I'm "high functioning", but only because I'm very selective with what I do. That means I'm doing okay in school and my home is in order, but I have no social life. I just got a puppy to help put a little love and life into my, well, life, but it has triggered a hell of a lot of symptoms from the personality disorder and has ended up making the whole experience so stressful that I'm legitimately scared I'm not cut out to keep my puppy. My depression is lurking and I am hanging on by a thread - mostly for this innocent little guy who didn't ask for any of this. It's a lot and I'm scared of the treatment I'm about to start. I really just want to give up, curl up in a ball, and let my depression take me again. I know that's not the right choice, but I'm tired...
Sending much love, thank you for sharing. Some things can suck all the life outta ya. But here you are, making youtube videos, being lively and strong. You really are an inspiration to me❤️
I'm so sorry about this. You have a wonderful mother. Padma Lakshmi talks about her endometriosis in her book Love, Loss, and What I Ate (also on audio with her reading it). Her doctors missed a few things that could have made the situation worse and she had all the means for the best. She got a great doctor who did a lot for her but he didn't have much hope for her situation...then at nearly 40 she accidentally got pregnant, a fairly easy, healthy pregnancy, other than the stress of not knowing who the father was & then finding out it wasn't who she wanted it to be. Her daughter, Krishna, is a very sweet, sassy, smart little girl, about ten years old, whose biological dad has finally stepped up to his position in her life. Now after all she's been through Padma is dealing with being premenopausal with a daughter beginning puberty so they're having a great, moody, feisty fun time quarantining together... though they're actually both lovely. I wish you the best with all aspects of your help. I'm sure you're empowering others.
I've recently been diagnosed with Multiple Sclerosis and it really sucks because all the people I know who have it have ended up in a wheelchair at age 40. I'm only 22 and in a relationship with the sweetest guy, who has essentially been told that, if we decide to spend the rest of our lives together, he may or may not have to deal with the physical and emotional decline that tends to go along with MS. But also: I'm not having any flare ups right now and the medication seems to work fine, so there are people who have it way worse. It could be worse. But it will probably also get worse for me eventually.
Its so good to hear you talk about this ❤ I have endo and adeno, i feel like attention for endo is increasing but adeno is still so "underground". Education is so important - i didnt know i should have not consented to ablation and advocated for excision for my first surgery.
I really feel for you having endo. 2 of my closest friends have endometriosis, they are both in the public system. So, neither of them are taken seriously enough. One of them faints while she has her period and she eventually went to a gynaecologist, and they gave her a freaking diary and that’s it! To diarise her freaking periods. Not even pain medication. That’s the other thing, neither of said friends are prescribed pain medication they’re supposed to just take Panadol or Nurofen or something. And as you described the pain, I’ve watched them crying in agony. Over the counter medication isn’t enough. It’s really frustrating to watch them struggle, but also have the medical profession invalidate their pain, and so in turn they invalidate themselves. They just have to get on with it, with no medication in agony and so they faint, or end up in the hospital. Thanks for talking about it Mia. I don’t actually suffer from it, but the infuriating situation watching my friends go through it is awful.
I was never officially diagnosed with endometriosis because by the time I found out my case was severe enough that my only option was a hysterectomy. During that time of the month I would have such severe pain that I would get blinding migraines and black out and be sick repeatedly. I also lost a lot of blood each month and afterwards I would be so drained it would take me a few weeks to feel back to normal just to have it start the process all over again. In my experience having kids made the pain worse, after my last baby it was so severe I couldn't function for a full week each month. It took me years to find a good Dr who actually cared enough to find a specialist willing to give me a hysterectomy, when the specialist saw me he said my uterus was distended to the size of a 3 month pregnancy from the growths and he wanted it out asap. Having someone believe me and understand my pain, actually getting the help I needed and the paperwork afterwards confirming everything I'd been telling my Drs for years, best feeling ever.
Raeven I had endometriosis hyperplasia when I was only 39, it was precancerous so I had complete hysterectomy. I had already had my kids so I was anxious for surgery. The bleeding and pain was so horrible, but I felt so much better after surgery. I’m 71 now and have end stage COPD. I’m so tired of the pain and tiredness; the only good things are my beautiful grand-daughter and my two cats. Between Covid19 and being weak and not breathing very well, I hardly leave house. I’m scared 😱 I can’t even think straight anymore. Wow I’ve never said that to anyone
@@charlashellhorn3866wow, similar with me. Hysterectomy at 39, and now I'm 71, too. I isolate alot , I don't have the energy to socialize anymore. Sometimes I get lonely. I try not to think about the past or the future. I find it helpful. I've always been hard on myself Bulimia from age 12 til 42. I appreciate all of you being open and honest, it gives strength. Love and blessings to all of you ❤
I have Endo too. I had surgery in January 2018 but I’m still in a bunch of pain and haven’t had a cycle in a year. Then before that I didn’t have it a couple that year and none for a year prior. My doctor told me everyone should apologize to me for doubting me because it was such a severe case. I relate to all these struggles. Even to go get something down the street is a big deal. To get anything accomplished at a certain time is certainly not guaranteed. My family does not get it despite how long I’ve been ill. Now my mom has stage 4 colorectal cancer out of literally nowhere and she is starting to understand the chronic pain but not the whole being alone and debilitated and broke part. I know it is so frustrating when you want to do things and you want to change the world and you’re stuck. Just found your channel. Hope you can feel better at some point 💜
Endo is such a hard thing to deal with. I’m so proud of you talking about it openly. I was diagnosed at 14 and it can get excruciatingly painful. THANK YOU for sharing this with us! I’m so blown away with you and your awesome attitude, and it’s also really good to see you open up like this. So sorry you’re suffering. I’m here if you need anything. Thinking of and praying for you! 💜💙💚💛🧡❤️
I'm sorry you're having to deal with this. "No one wants to be that person..." I so understand. I get it!!!! I've been dealing with back & leg pain for nearly a year. I haven't work for the last 9 months and it's been so frustrating because I'd just got my life back together after dealing with chronic depression for years. I fought my way back into a new career only to physically fall apart with debilitating back and leg pain. I look fine but while my friend is asking if I want to go for a walk, I'm wondering if I can get to the kitchen and stand long enough to make a sandwich and "No I won't be able to even sit in a chair if you come over." Fortunately, after an MRI, my Drs and I know what's actually wrong and I have a program that is fixing me. It's still unclear if I'll be able to return to work but I'm finally feeling hope again. I know what it's like to not feel that. So please vent wherever you need to. I know first hand about pain, fatigue, and the frustration with living a smaller life.
Your video has so much meaning, Mia!!! I also have endometriosis And am in recovery for Anorexia for the last 3 years. Omg, Endo makes ED recovery so much harder...what with the Endo "belly" and mood swings and all the horrific bodily things that make you want to go back to ED. Ugh... It's just so nice to know someone else can relate. Thank you so much for sharing ☺️❤️
Girl.. I am right there with you. It’s miserable. 2 painful/heavy periods a month, sometimes 3. My gyno had really hoped to get me on Orilissa but due to my osteoporosis I can’t. Supposedly he has seen great success with it. I was devastated to hear I didn’t qualify as like you, a hysterectomy is my only option left as surgery would have to be every 6 months and even then there’s no guarantee and also is scars you and that can cause a lot of other issues if you want to have kids/more kids etc. I rely heavily on a heated pad and it’s been very helpful. I’m sorry you are going through this. Wish I could make it go away. 🥺
I don't have endometriosis, but I do have PCOS and also yet to be diagnosed chronic pain (they're starting to think it could be fibromyalgia). It's really hard, because some people just don't listen. My doctors told me my pain would go away if I lost weight which just caused more stress for me (and it turned out they were completely wrong). I've been told for years to just take ibuprofen or paracetamol when things get bad, but nobody listens when I say that painkillers don't work. They don't even take the edge off. 🤷♀️ I do lots of things to try and distract myself from the pain but this can backfire and make it worse. I love playing piano, violin etc and I want to improve but it can cause so much pain to play. Doctors always ask if the pain affects my every day life like they don't think it does. Of course it does! I hope that your surgery goes well and helps with your pain.
Thanks for sharing Mia. I'd love if you did another video on this and how you deal with days when your pain is really bad and anything you've found helpful in managing your symptoms in general. Like you say it's so common and I'm sure a lot of people would benefit from it. Even hearing someone else describe how I'm feeling felt so validating
Sorry to hear you are going through this.. chronic illness is so hard and even more when it's not visible. I haven't experienced endo although one of my best friends had to have surgery for this a few years ago and I remember how much it affected her and how much pain she was in. I do understand how it feels to have chronic fatigue though, I have suffered with this for about 3 years now and the worst thing is that I have no diagnosis. Blood tests come back fine so everyone thinks it's in my head! Most days I drag myself through in a haze of exhaustion, I've lost touch with a lot of friends, lost interest in my work and I just feel like i've lost part of myself. Healing this has been a big part of my life this year and I'm seeing some light finally. Anyway sorry to also "vent" but I hope all these stories being shared help you not to feel alone. Never feel like you're whinging here it's good to hear you say how you really feel. Often we see everyone else's good side which makes us feel even worse when we aren't at our best
My chronic pain has ruined my life. I have multiple conditions and it has drained everything my bank account, energy, relationships, and sanity. After 20 years of fighting all I can tell you is that it's okay to be mad or whatever you are feeling. Don't get your hopes up too much with treatments because it's harder to keep going if you're too invested in one treatment and it doesn't work out.
I get you soooo much on not wanting to be that person. And I hate being tired so much. I can't see my friends in a normal way even if we decide to spend all the time in the cafe because I feel SO exhausted that it looks more like torture throughout the way. I really want to be there for that person and to have a great time but it honestly doesn't depend on me that my desire for sleep is barely resistible. Of course we could have walked and it would have been easier but hey chronic pain that makes it almost impossible on days. If I am not moving, I'm sleeping. It feels like a vicious circle.
The grey hoodie announcement made me laugh. We have the Dan Andrews outfit ranking in Victoria: 11am = not terrible After 12pm = bad Wearing a suit = real bad news Sports jacket = moderately bad news Northface jumper = it's the weekend Wearing a suit on the weekend after 12pm = shit's fu***** Mia: Gray Hoodie = Women's health and Lola time.
Dear Mia, I'm sending you a lot of love and strength! ♥️ The pain you feel is uberable and it's frustrating how much pain and illness related to the female reproductive system is underrated. 😢 I just want to say that your speaking up about eating disorders is so monumental! I remember all the therapist psychiatrists I have been to who have no education about ed how they not taken me seriously without a significant weight loss. My heart breaks imagining what happens when a suicidal sufferer doesn't get taken seriously. But if they search online and they stumble on you, the voice of reason, a light on the end of the tunel. ♥️ And know you are doing the same for women suffering from endometriosis 💕 You are the gift that never stops giving. Take all the help you can get, hormonal treatment that stops menstruation and with that further growth of tissue, laparoscopic removal of tissue, plant extracts,... That's all I can think of. 💕 My heart is with those who feel uberable pain while on their period and they are being told this is normal. It's not. Thank you for you raising awareness. 💜
I am so sorry to hear about that Mia. What is helping me through my journey is self-compassion (the book by Kristin Neff and a training I was lucky yo attend with her and Christopher Germer). I wish you with all my heart to get better
I don't have endometriosis, but do have another chronic illness. I'm now 20 and have had it most of my life- its an autoimmune condition. I get how tiring and hopeless it can feel sometimes, and it can get depressing knowing that there will probably never be a cure. It's expensive. It affects literally every part of your life every single day and no matter how hard you try you can never manage it perfectly, and the consequences suck. It also feels like nobody understands what your dealing with because you look healthy and they don't see the CONSTANT battle. I always used to tell myself that we only get what we can handle and that we just gotta keep moving forward one small step at a time. There are definitely easier days, but in general, it SUCKS. I hear you.
Sending love and energy. I have a lovely mixed bag of endo, Ehlers Danlos Syndrome and POTS. Grappling with the fact that you can't do the things you want to do is so hard. It's grief, especially if you were able to do those things earlier in life. Just know you're allowed to rest. You deserve rest and need it. Hope you have more energy tomorrow.
I can totally relate to the tiredness!! I have endo and I am shattered during and after my period. I have also had so many women say to me "I don't understand why you need to take time off for your period". I don't think anyone who doesn't have it can comprehend how debilitating it! Also testing is so bad! Doctors just don't take it seriously. It took 6 years for me to be diagnosed because doctors just told me to get pregnant and it will make it better. Ummmm... No. ALSO! I only found out in the last 3 years that ibuprofen doesn't work on period pain. This is after years of taking naprogesic, panadol and ibuprofen at the same time!!! Please, please, please keep hounding your doctor if you feel like you might have endo. You know your body better than anyone else. End of rant xx
Sorry you’re suffering, I was in this place with endo a few years ago (stage 4 endo, endomatrioma and adenomyosis). The trick is to find a surgeon who specializes in endo, because regular gynae’s unfortunately are only trained to recognize the advanced endo adhesions but often miss the early growth (so when operating the early signs are missed which then seems like recurrence when it becomes more advanced) or recommend outdated or inappropriate treatments (ie ablation rather than excision - it is quicker and easier to perform but has a higher rate of recurrence). I was a bit concerned to hear pregnancy and hysterectomy mentioned as possible cures, pregnancy is often recommended by gynae’s who aren’t up to date with current best practice, there is NO evidence that pregnancy will reduce endometriosis after the postpartum period, and likewise a hysterectomy will not cure endo, particularly if the ovaries are left in tact (which they generally should be in younger patients to avoid the impact losing hormone balance has on bone density). Sorry for the lengthy comment, but there is a lot to know about endo treatment and I have a strong instinct to want to help out a fellow endo sista. I hope you find some relief
Oh mia . Im so sorry you are in the crappy endometriosis club too! It's horribble and I relate to it getting you down. There really needs to be more research into it , its so overlooked. Thank you for talking about it! Sending love !
I have type one diabetes, and one of the biggest challenges I have is trying to find the balance between explaining the seriousness of my illness and how severely it impacts me sometimes without making me seem too fragile to be able to do all of the things healthy people can do. When I’m having a bad diabetes day I feel so hopeless and in utter despair at the thought of living like this for the rest of my life.
Hi. Thank you for talking about this. I had a rare chronic illness that caused me to need a hysterectomy at age 25. I kever talked about it to my family and friends, except for a few exceptions. I am now working on telling everyone and it is so hard. Because there is so much shame and stigma around the female reproductive system. Nobody wants to hear about your painful periods, you think. And of course you fear the invasive questions "how will you have children?" It says alot, i think, about the place of women in society. And as you said, not enough women where decisions are made means less funding to find a cure. Anyways thank you for talking publicly about those issues!
Honestly am not sure what I've got but I get chronic pain (might be lupus but waiting on more tests!)... I find that I never want to make too much of a fuss because I despise being that 'sick girl'. Everything in my life was about my ED for so long that I now place such value in my life not being about illness... the thought of it interfering with my life infuriates me!! I find myself annoying so think others will but I'm sure those around me just want to offer love and support! Hope you're doing okay Mia, life really can suck sometimes
Thank you for sharing your life story with us, much appreciated. I have stage 4 endometriosis and has the Dr's said the worse kind but there is nothing they can do for me. So like u feel helpless wanting sleep all the time no energy and the list is endless, I then have people saying to me get up push yourself😐I had a burst cyst late February and had it removed 2 March Dr's said it was like putty stuck everywhere. Anyway...thank you once again for sharing and letting us endometriosis women know we are not alone and we are Not crazy...I am truly grateful to have found your channel Thank you, May God help us all Amen
Pretty sure I don't have endo, but I feel you. I've had some variety of autoimmune disorder since I was 17, and it's so frustrating when people say "Don't you take medication that makes that like...better?" The pain medication I take is incredibly shitty because my NP isn't allowed to prescribe anything stronger, but I also never take it when I need it because it gives me insomnia. There are days when I can barely walk, but because I don't have any visible joint deformities, people seem to think there's nothing wrong with me. Anyways, you're awesome and I appreciate you talking about this
I just got diagnosed with endometriosis yesterday, it's such a bitch. I'm so grateful to have such supportive people in my life that are always looking out for me and willing to lend a hand.
Even with pain medication I’m still in pain. People think I’ll be OK as long as I would have that, but that’s just not the case. This disease and the other diseases I also have, affect the body and so many more ways. Then there’s also nerve pain, muscle pain, inflammatory pain Etc. It’s very hard to manage. I need pain management but I wish I didn’t need it. I feel you. Everything you’re saying 💛
I feel you ❤️ I go to a pain clinic every 3rd week for it and have for a year, and probably will for years. It has gotten better for me with the pain with this treatment (long working painkillers and blockades in my lower back), but it took a long time before i saw results. Fatigue is still a problem though... 😕 Funding and lack of research is a big problem! Thank you for talking about it Mia, it makes me feel better knowing you’re not alone 🙏
I just wanna say thank you so much for being so vulnerable and putting this video out, I know it wasn’t easy and I hope and pray that you can get some relief from this pain soon💛 About a year ago my sister was diagnosed with endometriosis and when she was telling me about it we both realized that I have the exact same symptoms as her. Unfortunately I can’t go to the doctor because health insurance is too expensive so I’m doing what I can to deal with it right now. I’m hoping that someday I can get insurance and maybe go to the same doctor that my sister goes to because they seemed to take her seriously (which I’m so happy about for her!) It’s so frustrating though because I’ve had to stay home from so many things because of the pain. Sending love, Mia, and thank you again💛
Hi Mia, I'm an accredited practising dietitian who specialises in IBS, women's health and emotional eating/disordered eating. I would agree - the funding and awareness of chronic conditions such as this is terrible. And there are so many women suffering. One thing I always suggest is seek out professional psychological support. Chronic illnesses are tiring, frustrating, and honestly just not fair. There are a few things you can do from a dietary perspective if you would like me to offer you some advice in the comments etc :)
MIa! I am so sorry that you are struggling with such a horrible issue. I can't imagine the type of strain that must put on your daily life. I do not have endo, but have been an asthmatic since I was 11. I am only daily medication and must take my rescue inhaler with me everywhere. I have had anxiety attacks because of accidentally leaving my inhaler somewhere. My asthma is triggered by exercise which was always a problem when I was struggling with my eating disorder! I also suffer from a Body focused repetitive behavior called trichotillomania. Essentially, compulsive hair pulling. Although my trich is currently not too bad since I have recovered from bulimia which has helped my over all wellbeing immensely, I had years of constant back/neck/shoulder pain from always having my arm above my head to pull. It caused a big muscular problem where some of my muscles were overdeveloped and some were underdeveloped, which puts a lot of strain on your body. I was finally able to see a PT to help get that worked out, but I spent years just dealing with the pain because I thought it was my fault and was ashamed of what I had done to myself. Thank you for sharing your story and I hope you can get another surgery soon and it will help out some!
Kate Noel's podcast "take the cake" just did a great episode on Chronic Illness and endometriosis. The woman she interviewed was amazing! I suffer from chronic digestive upset, which is not nearly as serious as endometriosis, but it definitely impacts my daily life, especially as someone recovering from an ED
I am so massively tired and exhausted. Most of the times I don't even know how to get up in the morning. During the last couple of months it worsened substantially. Also same story here with the pain killers. Every single month, cause I'd be in such bad pain and would be completely unable to work. Some years ago, I was at a workshop and the pain hit me like crazy. No pain killers available and I didn't dare to sneak out. I was in such big pain that I couldn't focus at all. I was so close to tears and waiting for this horrible day to end. Still, I never even thought of mentioning it to anyone because generally, the feedback of other women is "oh, you cannot take this little discomfort". My perspective only changed since a local radio station once raised awareness on the topic and they said it is not normal to take pain killers every month. However, I still think that people heavily disregard complaints about menstrual pain (mostly women ... probably these lucky 90%). Important to take note of: Taking pain killers permanently damages liver and kidneys.
I definitely recommend this book, Mia - ‘Period Power’ by Maisie Hill. The audiobook version is great too if you feel too tired to read and just want something helpful and empowering to listen to on days where you’re needing to rest. 💕
Mia, I feel for you so much. I struggle monthly with both ovulation and menstruation cramping and fatigue and it's hard. No diagnosis for me yet but I have already found my small amount of discomfort a massive interference with my life... I can only imagine what you're going through. Thank you for sharing your experience, I will be sending you love and keeping you in my thoughts xo
Thank you, Mia, for this video. I’ve been looking for a video where you talked about endometriosis because once a month I’m in such insane pain. My body went into shock once and I had to be taken to the hospital but I’m always being sent home because no one knows what’s wrong with me.. and I don’t even think that doctors don’t care, it really is that there’s not enough female representation in politics. That’s very important to notice, thank you! Imagine men were suffering from something like this.. there’d be studies, clinics, a cure probably.. anyways, thanks for this video, now I know what I may be searching for:)
Yes!!! I was just diagnosed. I keep trying to go to work, only to have to leave a few hours in. I hate going anywhere with anyone, cause I don’t want to feel like crap all day, you know, it affects your mood, and I don’t want to be “Debbie downer” I’m so tired. I HATE taking pills, and yet, I have to take at least 2 every four hours, just to cope. I woke up this am at 4:00. In pain. Always in pain. It never goes away. I am starting to learn as I’m researching this that there is no cure, and I’m just going to have to live with this. How can they sew a mans severed penis on and make it work again, and they can’t fix endometriosis!?!? It’s not for lack of specimens. 1 in ten woman, and no cure? There was only one guy that I knew of that got his dick cut off, and they fixed that right away. Back to shooting porn in no time. And that was decades ago. What is wrong with this picture? I wonder how many women’s partners have left them because they can’t have sex with them anymore? Mine accused me of making this pain up to avoid contact with him. After 12 excruciating hours in the ER, they told me I had endo. They gave me ibuprofen, and sent me home. When my husband touches me, it sends pain waves coursing thru my body. He says I recoil in horror when he touches me. So now, it’s the “guilt” I’m supposed to feel for not being able to give my partner what society says is my duty. Can’t leave him if I can’t work. What quality of life? I can’t live like this. I pass out from the pain. It gets worse every month, and the last one put me in the ER. I don’t know if I can handle what the next time will do to me. I have an appointment in a few days. Hoping, preying for answers.
I finally have a referral to see a specialist to get surgery to get a diagnosis for Endo in October. My iron is extremely low and I’m getting my first infusion in a couple weeks. I’m so tired and fatigued. I have horrible chronic sciatica pain in my legs. My periods are awful. It’s nice to know I’m not alone in my journey and struggle.
I would like to hear more about your journey. If there’s ways to help people understand like family and friends. I go back-and-forth between feeling like I need to ask for help and also feeling like I should just be more private or entirely private
Sending spoonie solidarity and love 💜 I have fibromyalgia and it sucks. Invisible illness sucks. Ableism sucks. I will say I feel it's important that whatever organization you focus your energy on to is trans inclusive. I think it's important to note that not all people with endometriosis are women, and not all women have a uterus.
Sending love back to you. And agreed re trans inclusivity, I try to be careful with my language and refer to 'people who menstruate' when I talk about this.
Celiac disease. Auto immune Mia this video is Me . I’m crying because finally I don’t feel alone . Your words ARE MINE ♥️. Migraines, poly neuropathy, the list goes on and on . I lost my mum who is my everything a few years ago ( to cancer ) just like your dad. Since then my auto immune diseases . Are much worse . Especially This year . I’ve been watching you sweet one . Since day one . And I can relate to each video , each podcast . My mum had celiac disease as well . And also other neurological problems . She exercised each day , nothing stoped her . But Cancer ( pancreatic ) got her . Her body was use to pain . Within six months she passed . I’ve never spoke of this on a platform ever . But you . Sweet Mia I. Will . You have suffered so much pain . And you keep going ♥️. Just like my mum and myself . With COVID it has made me that much more sick , scared , sad , very Lost . I have a wonderful doctor that after years of going around the world 🌎 trying to find help . All doctors either laughed at me . Or said is all in my head . When I found my Doctor he changed my life . But these diseases ( Auto immune) never go away . But what we found is that (STRESS) is the worst thing for us . For anybody really . But my body can’t fight as others . So on top of so much pain and sadness . This COVID has made my diseases Soar . But there is somewhat of a silver lining . They told me I couldn’t have kids . In 2008 I had a beautiful healthy boy . And I’m married for over 24 years . He’s my everything. And he’s stood by me through it all . But these past months . I’ve truly said so many times . I’m not me . I stoped exercise , even walking my sweet girl 🐺. Like I did before . And all I say is WHY ME , WHY NOW . And I’m not complaining just like you said Mia . But pain is pain . And Stress is there time to shine ( if that makes sense) . I’m so sorry that you are hurting emotionally and physically. From the huge loss of your dad . To your grand . Let alone a eating disorder that truly we fight each moment . But you my love are a strong , beautiful Human . Who brings so much awareness to the (Whole World 🌎 ) . I know you will fight this . You already are each day . I’m going to ask my doctor . And I will get back to you with as much info as I can get . But if your body is saying rest . Even on the couch 🛋. Let it . Our body’s are all Diffrent but yet we are all struggling to feel better . And I find Stress is the killer . And we are all so stressed . But with diseases. It’s that much more Hard To Deal with . Please know how much you have helped Us All . Through all that you have been through . And your Mum is right . By telling us . We can finally help you . As you have always Helped Us . I will show my Doctor this very Raw but very needed video 🙏🏼 And I will write all that he tells me . Please hang in there 🦋 MIA 🦋. Listen to your body ( as much as you can ) . And I know you will not only get better . But bring attention to humans that are in need of that voice that you have always used . Your a survivor sweet one . And a true beautiful Human . I truly am blessed I found you . (We All Are ) To be continued. Until then rest and know you will fight this head on . With much love 💕 and much health Alexa 🌱
I have two invisible chronic physical illnesses (Meniere’s Disease and Graves Disease) and am in the differential diagnosis stage for a third. All of them have been complicated. Meniere’s Disease isn’t life-threatening, but it is hugely life-altering. I’ve learned that I have significant physical limitations, and I have to honor those limits or my physical and mental health will let me know very quickly. It sucks having severe limitations, especially when you’re young and it doesn’t seem “fair.” I’m 34 and have had Meniere’s for almost a decade. It has been a roller coaster the whole time. Even though I had the last resort treatment and things have been going better, people assume that must have fixed everything. Spoiler alert: it didn’t. Life is livable now, but my new normal is nowhere close to my old normal. I still can’t do full time work for more than a couple weeks in a row without crashing. I still have days and weeks where my vestibular system hates me. Coworkers in my temp job ask why I’m there and not working a “real” job somewhere else, given that I look young and healthy. People who know I have an engineering degree wonder why I’m not working in that field anymore. When I tell people I have a vertigo disorder, they say things like, “yeah, I had vertigo once; have you tried X, Y, and Z?” I stay polite and tell them I have one of the best specialists in the state and we’ve tried all of the treatments that would help my specific disorder. They don’t understand that there are different types of vertigo, and that their one time experience isn’t the same as having episodes for hours at a time, multiple times a week for years in a row. They get offended if I’m not interested in trying their preferred ultra-restrictive diet that cures everything. Depending how close I am to the person, I sometimes say “that would be a quick trip back down the anorexia rabbit hole.” Fun story to piggyback on your experience with pain meds: the medication I take to relieve vertigo removes the filter between my brain and my tongue, and causes partial amnesia starting from when the meds kicked in. Inside thoughts that should’ve stayed inside my head were suddenly coming out of my mouth, and I couldn’t remember the next day what I’d said. Those weren’t advertised side effects; it was very interesting learning that’s what was going on and figuring out how to mitigate it. My husband found it very amusing. Therapy and my faith helped me make peace with my new normal. There are still times when I have flare-ups and things are worse, but I feel a lot less down about it now than I used to. Even in the midst of all of the health issues, I’m content with my overall life today, so it’s a decent assumption that I can be content tomorrow. Life is nothing like what I’d imagined it would be, but that’s ok. We’ve decided that it wouldn’t be wise to have children given my limitations, so I’ve had to come to peace with that as well.
My mom has chronic illness, nerve pain in her groin area. It gets in the way of her doing everything, all she can do is sit in odd positions to try and releve the pain. I feel conflicted because she has put off going to therapy and dealing with her mental illness for my entire life, constantly coming up with reasons why therapy won't work for her and blaming others ect. and now she has developed this chronic illness and although I know she's legitimately in pain I get so frustrated when she says she could never sit down for therapy, or go out to support groups ect. because of the pain she is in. She was always telling me while i struggled with my eating disorder that I needed to step up and take control of my own recovery, which I have. I want to tell her the same thing because I see her blaming chronic illness now as the reason she can't go out and take control of her recovery from abuse in childhood. I guess what I am saying is: I don't want to be insensitive because I truly don't know the daily pain she's in, and, should I really expect that she's now never capable of doing anything but lay on a couch? how can I support someone with chronic illness while not being enabling and not babying them? sorry for the venting.
I have endo as well. I’m so sorry you are suffering so badly from this life altering illness. I would not wish this on my worst enemy. I have given birth 3 times and I would say endo has been more painful than some of my labors. I will keep you in my thoughts and prayers ♥️
i’m also dealing with extreme fatigue 2 weeks out of the month and am trying to get answers from my doctor :( i feel for you, it’s so frustrating to think that there isn’t a real solution for the pain and fatigue
Love you Mia! I don't have endometriosis (that I know of) but I do have PMDD and I'm currently experiencing extreme fatigue on my cycle. PMDD isn't as severe as endo but I feel your pain. Sending love and hugs❤️
Gosh I'm so sorry you are suffering. The only thing I have heard is that some people feel relief with a Tens machine, but unfortunately it is only about 30%
I'm so sorry that you have to deal with this. I can't relate to what you're going through because I don't have endomitriosis. I do have cronic illness though, I suffer with hashimoto thyreoiditis (I don't know if it's the same word in english...) and my period is, lets just say, unreliable. I don't get it for a couple of months and ofcourse my ED doesn't help with that issue. But I find it hard to be taken seriously with my concerns, it's always like "Why do you want to get your period?! I would love to not have to worry about it!" And I find this so offensive. Sure, it's nice, I rarely have to deal with the period itsself. But I have to deal with my illnesses daily. (Mia, I hope this doesn't come off as offensive, because you suffer so much with your pain, I really don't mean it this way.) It's not nice to not know if I am able to have kids some day, it's not nice to see every month that my own body destroys part of my organs! If I have a flare up, I can't concentrate, stay awake, move properly because my energy level is so low. And I can never predict when it will happen, or when I will get my period unexpectedly and am not prepared for it. Anyways, sorry for the ramble, I hope this doesn't make anyone feel like I'm complaining about a minor issue compared to the insane pain you go through every month. Wishing you all the best :)
"Funny" story: Back when I didn't know, I had Endometriosis, I felt so good, when my ED had me down to a weight where I didn't get my period anymore, 'cause I was finally free from the pain. And now, with a healthy weight and periods, the pain kinda triggers my ED thoughts.
Sometimes when you have chronic illness you remember that your life is and will always be groundhog day. Those are hard days. I've had a rare and incurable disease for over 20 years almost 30 now actually, none of my friends or family understand what it's like as I look relatively normal, but it's a constant struggle and so many drugs to control it.
I have a mild case of endo, my mom had it severe to the point that I almost didn't exist, and I have other chronic issues. They think mine is only as mild as it is because with my family history, they put me on BC to stop my periods from the first onset of symptoms to preserve things as best they could. Just sharing to say you're not alone and sending you love and hoping you get some relief soon in some way. Healthcare for uterus havers is very lacking in the worst way with research and intervention without major surgeries. It's so bad. My main illness is ehlers danlos though which is invisible and stupid, too.
I have chronic pain in a lot of the same places you mentioned, to the point where significantly impacts daily life. Part of the issue is scoliosis for me, but I’m wondering if endo is contributing as family members have it too. Apparently it’s hard diagnose much less manage :/
Birth control helped a lot of my diaphragmatic endo symptoms. Then my ED took them away when I lost my cycle and none of it has returned. I feel for you. It's misery.
I have gastroparesis and feel pretty much the same way about it...no good way to treat it, not much research done about it, etc. I feel nauseated and throw up all the time (that might be tmi) and it put me in the hospital for 10 days in January. I also have a chronic pain condition that I developed 6 yrs ago after an injury. (And of course I'm here bc I also have a looong ED history.) I get it. It all sucks.
I also have a chronic illness and wish I had the option to listen to my body. I have to work long shifts in a physically and emotionally demanding job, whilst dealing with my symptoms. I am exhausted but unless I retrain in a new career this is my only option.
My daughter possibly has PCOS and trying to get the dr to listen to her is so hard. Myself I have IBS and acid reflux and that has been a huge issue during covid and my dr really wont listen to me and all he says its because of my mental health and increased stress. Having a hidden illness sucks so bad. The exhaustion I feel daily really really upset me
I had to see half a dozen family practitioners/gynecologists who ended up dismissing me because I was unhappy with their care. They tried to tell me my pain was in my head from being raped. The only reason I divulged that information was to explain why I had taken Plan B so many times. I was not hysterical in my explanation, but I was still dismissed by the doctor as simply being drug seeking and or having psychological pain. Then I found an OB/GYN with a holistic physicians health alliance who did a laparoscopic surgery with a da Vinci robot. They thought it would take about 30 to 45 minutes and it took over four hours. So that’s why he said I was owed an apology because my pain had been dismissed four a whole year. Unfortunately, because my hormones never were addressed, even by this supposed holistic doctor, I believe it all just came back. Now it’s back to no one believing me and also being too sick to make it on time to appointments with the doctor so he dismissed me a while ago.
I know what you mean by looking fine, but not feeling fine. It’s either that or I look like crap and people accuse me of using drugs or having an eating disorder. Im either feeling so nauseous or am in too much pain that I lose my appetite or I just can’t afford food. I would love to eat. I just wish people would listen to what I say the problem is instead of judging me and trying to see things that aren’t there.
I am certain I need another surgery again. The problem is I know it was a very difficult recovery the first time and it left me unable to work. Never recovered financially from that, especially with the impact of the pandemic on my small business after that. But I know my hormones are all messed up, as I started having these issues after using various birth controls and taking Plan B a few too many times, once while using birth control. Started with migraines that were insufferable then stabbing localized pain, generalized burning pains, and aches down my legs became constant and daily. I also have hypothyroidism it’s hard enough to get a doctor to prescribe me natural thyroid medication because I don’t do well on synthetic. I asked doctors to measure my sex hormones but they don’t. I would have to cancel my Medicaid in order to see holistic doctors out of pocket. I’m just worried until my hormones are fixed, surgeries will be more detrimental if it will all just come back and if the recovery will be like before. If you have any guidance I’d appreciate it. I feel like I know a lot about this topic, but for some reason I can’t seem to help myself past this point.
Why is endometriosis commonly diagnosed so late? Did you have symptoms in your teens already (such as extreme pain etc.) or do you think it developed later on? I'm very curious!
I've been wondering for years and years whether or not I had endometriosis. On the one hand, my periods are really bad and accompanied with weird symptoms that no one else I know has but, on the other hand, I read testimonies of people who do have endometriosis and can't even get up from bed for a full week and I think "I'm not that bad. Who am I to say I have this illness when it's probably just bad period pains?". One of my most striking symptoms is very strong pain in my thighs, all the way down to just above my knees. Does anyone know if that sounds like something that could be caused by endometriosis or have I just drawn the short end of the stick in terms of weirdly painful periods? Anyway, it's always great to hear someone share their experience with it, thank you Mia !
Heya, kiwi with multiple chronic illnesses, including endo and chronic pain. I was told for 7 years that I couldnt have endo, turns out it was found in a lap for another thing and noone told me or my drs, I'm having my first lap excision in 6 weeks ... eeek! I would be very keen to hear you reach out to Qendo (Queensland based endo support but also has a really good app) and Endometriosis Australia, they are both beautiful and on Instagram. The other which could be fun is bridget Huthwhate (unsure if that's how its spelt), she is a radio presenter in Melbourne and runs endogram on insta, she is a beautiful human and just had her 3rd(?) Excision, first private I believe so would be awesome to hear a collab there 😍😍
Take the Cake Podcast with Kate Noel has Jay Rishe (who suffers from endometriosis) on an episode. Jay makes reference to support groups in that interview.
Mia read reply to Raeven I was talking to both and got carried away! I understand how you feel, and it’s even worse because you’re so young, I wish I could help🥰
Omg tell us more about this! I don’t know about this much. I’m in recovery and my periods are getting worst n worst . So I’m gonna go look this up now lol., because I have days I just spend in bed because of pms or the week before it
Mia, how do you feel about the idea of body positive attempt at weight loss. Is it possible to want to/try to lose weight because you personally want it for yourself (ie my body is in pain bc of extra weight) and still be body positive and avoid eating disorder triggers? It's so complicated because my body actually hurts and feels bad being heavier (which I know isn't the case for all people in larger bodies) but I have struggled with your dieting and disordered eating in my past. I dont know how to focus on weight loss without becoming obsessed and disordered. When I intuitively eat I find that I eat a lot of sugar and I do go on walks, swim and do yoga but my pain causes me to not get a lot of activity. And all I'm seeing is my body getting bigger with time
I don't have endometriosis but I have suffered from chronic migraine and when it was at its worst even non migraine days were write offs while recovering. Chronic pain is exhausting. When people can't see what's disabling you it's exahsusing to have to explain and exhausting to listen to unsolicited and uninformed suggestions of what to do to help. So I'm not going to make suggestions about what to do, you and your doctor know your body and how to help it best. Just want to validate your vent sesh. They are totally needed at times.
Look into the autoimmune paleo protocol. It greatly reduces systemic inflammation. The less plants you eat, the better. They promote inflammation. Carbohydrates promote inflammation. Eat low carb or ketogenic. A lot of people regained their health on the carnivore diet also.
SO much love Mia. I wish I could talk to you about it, it's a horrible thing. I just got the hysterectomy in the end. Halved the pain. Syneral plus HRT gave me the same result but it's expensive and HRT caused anxiety to spike. Then again, I never wanted kids. It's a HORRIBLE thing. The worst part is no one understands. Friends don't get it and they want you to be out and about and not having 'quiet time' in bed. All my friends are so bloody active it makes me ill. :) Anyway, I literally feel your pain, I know how bad it gets in your 30's just when you don't think it can't possibly get any worse. LOADS of love and gosh I could swap stories for years. So buckets of love and pain killers. You've been VERY sensible with your career and that's something I did too. My GP would laugh when I said 'I need a sedentary job' but I knew the pain was taking over. You're amazing, you're extraordinary and we can still have lives, just slightly different to the ones we dreamed of. I think we both still have pretty dreamlike lives in terms of jobs. xoxoxoxoxoxoxoxoxoxoxox
After struggling with every eating disorder known (and then some) for 24 years, and working through recovery for the last 19 months, I’m weight restored (though still gaining and far far from recovered), I look “fine” and people treat me differently now (without the concern=without attention), but I’m so not “fine”. I have peripheral neuropathy in both feet and one leg for 2 1/2 years. It’s tingling all day, all night, without a rest. No one sees it. But to be left with this when I’m fighting so hard feels cruel at times. Somehow I feel a bit less lonely knowing others understand how much harder it is going through recovery, or struggling with food issues, while plagued chronically with discouraging pain or illness. I don’t remember life before. Praying God uses this pain somehow for His glory and even somehow towards my freedom one day. Jeremiah 29:11 right? Still terribly hard every day though. Love you Mia, and everyone who posted. It takes a really strong person to get through illnesses, especially physical and mental at the same time. Remember how strong you are!!!
Thank you so much, I get it. Auotoimmune disease with no cure. Feel somewhat robbed having worked so hard to overcome anorexia from age 10-28 to now have struggled almost two decades with chronic invisible illness. It's hard because people without it don't " get" it.
Sending love from someone with fibromyalgia who feels constantly in a battle with my body. It’s sooooo frustrating especially when people say to you “oh you don’t look ill”. Well what the hell is that supposed to mean???? (sorry to vent, but its been a bad week and it’s only Tuesday!!) Anyway, sending gentle hugs to everyone on here as I’m sure we’re all in need of one. Cheryl. xxxx
Thats ridiculous! Thats like saying "you don't look like you have a migraine"... what do people expect to see? An axe wound suddenly appear on your body when you start feeling unwell?! Sorry that you have to deal with that. I know people with fibromyalgia and it sounds like such an awful and misunderstood issue to have. Hope the rest of your week is better!
@@gottiey couldn’t have said it better myself Rachel, lol. Thank you for the kind words. It is very much appreciated. xx
I also have fibro and yes to all you said. I went to The ER a few weeks ago because the pain in my neck and shoulders was so bad. Just for them to say “oh it’s probably just your fibro.“ And sending me home with a pamphlet telling me to exercise and meditate more. UGH like yes of course that stuff does help but I wouldn’t go to the emergency room if it didn’t feel severe enough. And ended up going home just feeling so stupid (still in pain and unable to sleep) bc it’s “just in my head”
@@jenrivera5893 Sounds like an awful experience Jen. I’m having a lot of pain in my arms at the moment and I just can’t put myself anywhere that is a comfortable position so I’m sure the neck and shoulders must be exactly the same. Hope it has eased a little for you and you’ve been able to get some rest.
I’m sending you love and kindness. I also have endometriosis. Was diagnosed after I had my daughter. The fatigue is so bad! And the pain... I used to think every woman had this every month. Turns out, it’s not normal! So while I hate that you are going through this, I am so happy you are talking about it! We need more women being vocal about this. Thank you!
I have an invisible illness! Severe eosinophilic asthma, meaning I’m 22 on daily medications for allergies and injections monthly to control my bloods. But obviously I look entirely healthy, but it often causes exhaustion (emotional and physical). I have been inside now for 5 months since Covid as I am so high risk and it gets more difficult by the day, I can’t even go to work:( I think that this is the first time that my mental health has been so affected by my physical health (other than my medical trauma lolz) but it’s ‘only asthma’ as I’ve heard so so many times through my life... thank you for this space to vent😂 I hope you have some relief from your symptoms soon.
That sounds super frustrating and hard to go through. For everyone suffering from endometriosis, I am proud of you for holding on. Thank you Mia once again for spreading awareness. I'll keep this on my mind and be an advocate wherever I can.
Hi Mia,
Thank you so much for talking about this.
I'm 22 and I've had ulcerative colitis (UC) (a chronic autoimmune bowel disease) since I was 16. It's also highly likely that my ED (I'm now recovered yay!) contributed to/caused my UC. But unlike my ED, I'll never fully 'recover' from UC since it's a life-long condition. I have an identical twin sister but she doesn't have it so she doesn't understand. It's super hard to talk about my UC because it involves a lot of 'gross' things like colonoscopies, stool tests, taking emenas/suppositories etc. I've always felt pretty alone having this condition, even though I'm lucky I have a super mild type, because I don't know ANYONE else around my age who also has UC. Whenever I go to have medical procedures, often the wards are full of older men and I feel like I don't belong there.
Anyways thanks for allowing me to vent haha
Sending you love,
Sophie xox
❤sending love and hope
I feel your pain, albeit with different issues.
My invisible illness is my IBS and I also have pain from my scoliosis. I’m at the point where I’ve lost interest in not being the person to talk about the pain tbh.
It took my years to get diagnosed with IBS because my doctor didn’t take it seriously and it caused me to relapse into my ED and get to my sickest point in that regard. The worst part is that the first medication I tried for my intestinal spasms (dicyclomine) works great for me with no side effects.
Thankfully I now have a different doctor who’s absolutely lovely. You’d think a doctor who was at your birth would care about your health though, right? Sometimes I wish he hadn’t retired so I had the chance to tell him why he was wrong and what it cost me.
Thank you for sharing. I am so sorry you are suffering from endo. I have severe endo as well so I completely understand. I appreciate you sharing that you had it on your diaphragm (yikes! So sorry!!). I think there is a big misconception that endo only grows on the uterus or ovaries. It can grow anywhere!! I have had it on several organs and have had several surgeries. I even traveled out of state to have surgery with a endo specialist. The hidden part of the illness is frustrating since no ones “sees” your pain. You are not alone💜
OMG Mía that sounds horrendous. I honestly have to agree with you that lots of female conditions and diseases go unnoticed due to lack of awareness and funding. Thank you for shedding light on endometriosis and sharing your experience which is so valuable and valid. You set an example and allow us, in a way, to also speak up about however we feel. Not minimize or ignore any pain: physical, emotional, mental. I admire you SO much.
I'm newly diagnosed with mixed personality disorder. No one - other than my mother - has any idea how it affects me. I'm "high functioning", but only because I'm very selective with what I do. That means I'm doing okay in school and my home is in order, but I have no social life. I just got a puppy to help put a little love and life into my, well, life, but it has triggered a hell of a lot of symptoms from the personality disorder and has ended up making the whole experience so stressful that I'm legitimately scared I'm not cut out to keep my puppy. My depression is lurking and I am hanging on by a thread - mostly for this innocent little guy who didn't ask for any of this. It's a lot and I'm scared of the treatment I'm about to start. I really just want to give up, curl up in a ball, and let my depression take me again. I know that's not the right choice, but I'm tired...
Sending much love, thank you for sharing. Some things can suck all the life outta ya. But here you are, making youtube videos, being lively and strong. You really are an inspiration to me❤️
I'm so sorry about this. You have a wonderful mother. Padma Lakshmi talks about her endometriosis in her book Love, Loss, and What I Ate (also on audio with her reading it). Her doctors missed a few things that could have made the situation worse and she had all the means for the best. She got a great doctor who did a lot for her but he didn't have much hope for her situation...then at nearly 40 she accidentally got pregnant, a fairly easy, healthy pregnancy, other than the stress of not knowing who the father was & then finding out it wasn't who she wanted it to be. Her daughter, Krishna, is a very sweet, sassy, smart little girl, about ten years old, whose biological dad has finally stepped up to his position in her life. Now after all she's been through Padma is dealing with being premenopausal with a daughter beginning puberty so they're having a great, moody, feisty fun time quarantining together... though they're actually both lovely. I wish you the best with all aspects of your help. I'm sure you're empowering others.
I've recently been diagnosed with Multiple Sclerosis and it really sucks because all the people I know who have it have ended up in a wheelchair at age 40. I'm only 22 and in a relationship with the sweetest guy, who has essentially been told that, if we decide to spend the rest of our lives together, he may or may not have to deal with the physical and emotional decline that tends to go along with MS. But also: I'm not having any flare ups right now and the medication seems to work fine, so there are people who have it way worse. It could be worse. But it will probably also get worse for me eventually.
Isabel Carstensen Look into the autoimmune paleo protocol. It greatly reduces systemic inflammation. The less plants you eat, the better.
Its so good to hear you talk about this ❤ I have endo and adeno, i feel like attention for endo is increasing but adeno is still so "underground". Education is so important - i didnt know i should have not consented to ablation and advocated for excision for my first surgery.
I really feel for you having endo. 2 of my closest friends have endometriosis, they are both in the public system. So, neither of them are taken seriously enough. One of them faints while she has her period and she eventually went to a gynaecologist, and they gave her a freaking diary and that’s it! To diarise her freaking periods. Not even pain medication. That’s the other thing, neither of said friends are prescribed pain medication they’re supposed to just take Panadol or Nurofen or something. And as you described the pain, I’ve watched them crying in agony. Over the counter medication isn’t enough. It’s really frustrating to watch them struggle, but also have the medical profession invalidate their pain, and so in turn they invalidate themselves. They just have to get on with it, with no medication in agony and so they faint, or end up in the hospital. Thanks for talking about it Mia. I don’t actually suffer from it, but the infuriating situation watching my friends go through it is awful.
I was never officially diagnosed with endometriosis because by the time I found out my case was severe enough that my only option was a hysterectomy. During that time of the month I would have such severe pain that I would get blinding migraines and black out and be sick repeatedly. I also lost a lot of blood each month and afterwards I would be so drained it would take me a few weeks to feel back to normal just to have it start the process all over again. In my experience having kids made the pain worse, after my last baby it was so severe I couldn't function for a full week each month. It took me years to find a good Dr who actually cared enough to find a specialist willing to give me a hysterectomy, when the specialist saw me he said my uterus was distended to the size of a 3 month pregnancy from the growths and he wanted it out asap. Having someone believe me and understand my pain, actually getting the help I needed and the paperwork afterwards confirming everything I'd been telling my Drs for years, best feeling ever.
Raeven I had endometriosis hyperplasia when I was only 39, it was precancerous so I had complete hysterectomy. I had already had my kids so I was anxious for surgery. The bleeding and pain was so horrible, but I felt so much better after surgery. I’m 71 now and have end stage COPD. I’m so tired of the pain and tiredness; the only good things are my beautiful grand-daughter and my two cats. Between Covid19 and being weak and not breathing very well, I hardly leave house. I’m scared 😱 I can’t even think straight anymore. Wow I’ve never said that to anyone
@@charlashellhorn3866 I really hope things start to get easier for you, it's so tough to be sick and have medical issues.
@@charlashellhorn3866wow, similar with me. Hysterectomy at 39, and now I'm 71, too. I isolate alot , I don't have the energy to socialize anymore. Sometimes I get lonely. I try not to think about the past or the future. I find it helpful. I've always been hard on myself Bulimia from age 12 til 42. I appreciate all of you being open and honest, it gives strength. Love and blessings to all of you ❤
I have Endo too. I had surgery in January 2018 but I’m still in a bunch of pain and haven’t had a cycle in a year. Then before that I didn’t have it a couple that year and none for a year prior. My doctor told me everyone should apologize to me for doubting me because it was such a severe case. I relate to all these struggles. Even to go get something down the street is a big deal. To get anything accomplished at a certain time is certainly not guaranteed. My family does not get it despite how long I’ve been ill. Now my mom has stage 4 colorectal cancer out of literally nowhere and she is starting to understand the chronic pain but not the whole being alone and debilitated and broke part.
I know it is so frustrating when you want to do things and you want to change the world and you’re stuck. Just found your channel. Hope you can feel better at some point 💜
Endo is such a hard thing to deal with. I’m so proud of you talking about it openly. I was diagnosed at 14 and it can get excruciatingly painful. THANK YOU for sharing this with us! I’m so blown away with you and your awesome attitude, and it’s also really good to see you open up like this. So sorry you’re suffering. I’m here if you need anything. Thinking of and praying for you! 💜💙💚💛🧡❤️
I'm sorry you're having to deal with this. "No one wants to be that person..." I so understand. I get it!!!! I've been dealing with back & leg pain for nearly a year. I haven't work for the last 9 months and it's been so frustrating because I'd just got my life back together after dealing with chronic depression for years. I fought my way back into a new career only to physically fall apart with debilitating back and leg pain. I look fine but while my friend is asking if I want to go for a walk, I'm wondering if I can get to the kitchen and stand long enough to make a sandwich and "No I won't be able to even sit in a chair if you come over." Fortunately, after an MRI, my Drs and I know what's actually wrong and I have a program that is fixing me. It's still unclear if I'll be able to return to work but I'm finally feeling hope again. I know what it's like to not feel that. So please vent wherever you need to. I know first hand about pain, fatigue, and the frustration with living a smaller life.
Your video has so much meaning, Mia!!! I also have endometriosis And am in recovery for Anorexia for the last 3 years. Omg, Endo makes ED recovery so much harder...what with the Endo "belly" and mood swings and all the horrific bodily things that make you want to go back to ED. Ugh... It's just so nice to know someone else can relate. Thank you so much for sharing ☺️❤️
Girl.. I am right there with you. It’s miserable. 2 painful/heavy periods a month, sometimes 3. My gyno had really hoped to get me on Orilissa but due to my osteoporosis I can’t. Supposedly he has seen great success with it. I was devastated to hear I didn’t qualify as like you, a hysterectomy is my only option left as surgery would have to be every 6 months and even then there’s no guarantee and also is scars you and that can cause a lot of other issues if you want to have kids/more kids etc. I rely heavily on a heated pad and it’s been very helpful. I’m sorry you are going through this. Wish I could make it go away. 🥺
I don't have endometriosis, but I do have PCOS and also yet to be diagnosed chronic pain (they're starting to think it could be fibromyalgia). It's really hard, because some people just don't listen. My doctors told me my pain would go away if I lost weight which just caused more stress for me (and it turned out they were completely wrong). I've been told for years to just take ibuprofen or paracetamol when things get bad, but nobody listens when I say that painkillers don't work. They don't even take the edge off. 🤷♀️ I do lots of things to try and distract myself from the pain but this can backfire and make it worse. I love playing piano, violin etc and I want to improve but it can cause so much pain to play. Doctors always ask if the pain affects my every day life like they don't think it does. Of course it does! I hope that your surgery goes well and helps with your pain.
Thanks for sharing Mia. I'd love if you did another video on this and how you deal with days when your pain is really bad and anything you've found helpful in managing your symptoms in general. Like you say it's so common and I'm sure a lot of people would benefit from it. Even hearing someone else describe how I'm feeling felt so validating
Sorry to hear you are going through this.. chronic illness is so hard and even more when it's not visible. I haven't experienced endo although one of my best friends had to have surgery for this a few years ago and I remember how much it affected her and how much pain she was in. I do understand how it feels to have chronic fatigue though, I have suffered with this for about 3 years now and the worst thing is that I have no diagnosis. Blood tests come back fine so everyone thinks it's in my head! Most days I drag myself through in a haze of exhaustion, I've lost touch with a lot of friends, lost interest in my work and I just feel like i've lost part of myself. Healing this has been a big part of my life this year and I'm seeing some light finally. Anyway sorry to also "vent" but I hope all these stories being shared help you not to feel alone. Never feel like you're whinging here it's good to hear you say how you really feel. Often we see everyone else's good side which makes us feel even worse when we aren't at our best
My chronic pain has ruined my life. I have multiple conditions and it has drained everything my bank account, energy, relationships, and sanity. After 20 years of fighting all I can tell you is that it's okay to be mad or whatever you are feeling. Don't get your hopes up too much with treatments because it's harder to keep going if you're too invested in one treatment and it doesn't work out.
I get you soooo much on not wanting to be that person. And I hate being tired so much. I can't see my friends in a normal way even if we decide to spend all the time in the cafe because I feel SO exhausted that it looks more like torture throughout the way. I really want to be there for that person and to have a great time but it honestly doesn't depend on me that my desire for sleep is barely resistible. Of course we could have walked and it would have been easier but hey chronic pain that makes it almost impossible on days. If I am not moving, I'm sleeping. It feels like a vicious circle.
The grey hoodie announcement made me laugh. We have the Dan Andrews outfit ranking in Victoria:
11am = not terrible
After 12pm = bad
Wearing a suit = real bad news
Sports jacket = moderately bad news
Northface jumper = it's the weekend
Wearing a suit on the weekend after 12pm = shit's fu*****
Mia: Gray Hoodie = Women's health and Lola time.
Dear Mia, I'm sending you a lot of love and strength! ♥️ The pain you feel is uberable and it's frustrating how much pain and illness related to the female reproductive system is underrated. 😢
I just want to say that your speaking up about eating disorders is so monumental! I remember all the therapist psychiatrists I have been to who have no education about ed how they not taken me seriously without a significant weight loss. My heart breaks imagining what happens when a suicidal sufferer doesn't get taken seriously. But if they search online and they stumble on you, the voice of reason, a light on the end of the tunel. ♥️
And know you are doing the same for women suffering from endometriosis 💕
You are the gift that never stops giving.
Take all the help you can get, hormonal treatment that stops menstruation and with that further growth of tissue, laparoscopic removal of tissue, plant extracts,... That's all I can think of. 💕 My heart is with those who feel uberable pain while on their period and they are being told this is normal. It's not. Thank you for you raising awareness. 💜
I am so sorry to hear about that Mia. What is helping me through my journey is self-compassion (the book by Kristin Neff and a training I was lucky yo attend with her and Christopher Germer). I wish you with all my heart to get better
I have a friend who has this and I see how absolutely debilitating it is! I'm sending love. ❤️
I don't have endometriosis, but do have another chronic illness. I'm now 20 and have had it most of my life- its an autoimmune condition. I get how tiring and hopeless it can feel sometimes, and it can get depressing knowing that there will probably never be a cure. It's expensive. It affects literally every part of your life every single day and no matter how hard you try you can never manage it perfectly, and the consequences suck. It also feels like nobody understands what your dealing with because you look healthy and they don't see the CONSTANT battle. I always used to tell myself that we only get what we can handle and that we just gotta keep moving forward one small step at a time. There are definitely easier days, but in general, it SUCKS. I hear you.
Sending love and energy. I have a lovely mixed bag of endo, Ehlers Danlos Syndrome and POTS. Grappling with the fact that you can't do the things you want to do is so hard. It's grief, especially if you were able to do those things earlier in life. Just know you're allowed to rest. You deserve rest and need it. Hope you have more energy tomorrow.
I can totally relate to the tiredness!! I have endo and I am shattered during and after my period. I have also had so many women say to me "I don't understand why you need to take time off for your period". I don't think anyone who doesn't have it can comprehend how debilitating it!
Also testing is so bad! Doctors just don't take it seriously. It took 6 years for me to be diagnosed because doctors just told me to get pregnant and it will make it better. Ummmm... No.
ALSO! I only found out in the last 3 years that ibuprofen doesn't work on period pain. This is after years of taking naprogesic, panadol and ibuprofen at the same time!!!
Please, please, please keep hounding your doctor if you feel like you might have endo. You know your body better than anyone else.
End of rant xx
Sorry you’re suffering, I was in this place with endo a few years ago (stage 4 endo, endomatrioma and adenomyosis). The trick is to find a surgeon who specializes in endo, because regular gynae’s unfortunately are only trained to recognize the advanced endo adhesions but often miss the early growth (so when operating the early signs are missed which then seems like recurrence when it becomes more advanced) or recommend outdated or inappropriate treatments (ie ablation rather than excision - it is quicker and easier to perform but has a higher rate of recurrence). I was a bit concerned to hear pregnancy and hysterectomy mentioned as possible cures, pregnancy is often recommended by gynae’s who aren’t up to date with current best practice, there is NO evidence that pregnancy will reduce endometriosis after the postpartum period, and likewise a hysterectomy will not cure endo, particularly if the ovaries are left in tact (which they generally should be in younger patients to avoid the impact losing hormone balance has on bone density). Sorry for the lengthy comment, but there is a lot to know about endo treatment and I have a strong instinct to want to help out a fellow endo sista. I hope you find some relief
Oh mia . Im so sorry you are in the crappy endometriosis club too! It's horribble and I relate to it getting you down. There really needs to be more research into it , its so overlooked. Thank you for talking about it! Sending love !
I have type one diabetes, and one of the biggest challenges I have is trying to find the balance between explaining the seriousness of my illness and how severely it impacts me sometimes without making me seem too fragile to be able to do all of the things healthy people can do. When I’m having a bad diabetes day I feel so hopeless and in utter despair at the thought of living like this for the rest of my life.
I’m one of those who my dr doesn’t take me seriously. But I feel your pain girl! It’s horrible. The pain is so real....
Hi. Thank you for talking about this. I had a rare chronic illness that caused me to need a hysterectomy at age 25. I kever talked about it to my family and friends, except for a few exceptions. I am now working on telling everyone and it is so hard. Because there is so much shame and stigma around the female reproductive system. Nobody wants to hear about your painful periods, you think. And of course you fear the invasive questions "how will you have children?" It says alot, i think, about the place of women in society. And as you said, not enough women where decisions are made means less funding to find a cure. Anyways thank you for talking publicly about those issues!
Honestly am not sure what I've got but I get chronic pain (might be lupus but waiting on more tests!)... I find that I never want to make too much of a fuss because I despise being that 'sick girl'. Everything in my life was about my ED for so long that I now place such value in my life not being about illness... the thought of it interfering with my life infuriates me!! I find myself annoying so think others will but I'm sure those around me just want to offer love and support! Hope you're doing okay Mia, life really can suck sometimes
Thank you for sharing your life story with us, much appreciated.
I have stage 4 endometriosis and has the Dr's said the worse kind but there is nothing they can do for me. So like u feel helpless wanting sleep all the time no energy and the list is endless, I then have people saying to me get up push yourself😐I had a burst cyst late February and had it removed 2 March Dr's said it was like putty stuck everywhere. Anyway...thank you once again for sharing and letting us endometriosis women know we are not alone and we are Not crazy...I am truly grateful to have found your channel Thank you, May God help us all Amen
Can relate to this, my invisible illness is me/cfs & ibs. I can relate to your fatigue issues ❤️❤️
Pretty sure I don't have endo, but I feel you. I've had some variety of autoimmune disorder since I was 17, and it's so frustrating when people say "Don't you take medication that makes that like...better?" The pain medication I take is incredibly shitty because my NP isn't allowed to prescribe anything stronger, but I also never take it when I need it because it gives me insomnia. There are days when I can barely walk, but because I don't have any visible joint deformities, people seem to think there's nothing wrong with me.
Anyways, you're awesome and I appreciate you talking about this
I just got diagnosed with endometriosis yesterday, it's such a bitch. I'm so grateful to have such supportive people in my life that are always looking out for me and willing to lend a hand.
Even with pain medication I’m still in pain. People think I’ll be OK as long as I would have that, but that’s just not the case. This disease and the other diseases I also have, affect the body and so many more ways. Then there’s also nerve pain, muscle pain, inflammatory pain Etc. It’s very hard to manage. I need pain management but I wish I didn’t need it. I feel you. Everything you’re saying 💛
I feel you ❤️ I go to a pain clinic every 3rd week for it and have for a year, and probably will for years. It has gotten better for me with the pain with this treatment (long working painkillers and blockades in my lower back), but it took a long time before i saw results. Fatigue is still a problem though... 😕 Funding and lack of research is a big problem! Thank you for talking about it Mia, it makes me feel better knowing you’re not alone 🙏
I just wanna say thank you so much for being so vulnerable and putting this video out, I know it wasn’t easy and I hope and pray that you can get some relief from this pain soon💛 About a year ago my sister was diagnosed with endometriosis and when she was telling me about it we both realized that I have the exact same symptoms as her. Unfortunately I can’t go to the doctor because health insurance is too expensive so I’m doing what I can to deal with it right now. I’m hoping that someday I can get insurance and maybe go to the same doctor that my sister goes to because they seemed to take her seriously (which I’m so happy about for her!) It’s so frustrating though because I’ve had to stay home from so many things because of the pain.
Sending love, Mia, and thank you again💛
Hi Mia, I'm an accredited practising dietitian who specialises in IBS, women's health and emotional eating/disordered eating. I would agree - the funding and awareness of chronic conditions such as this is terrible. And there are so many women suffering. One thing I always suggest is seek out professional psychological support. Chronic illnesses are tiring, frustrating, and honestly just not fair. There are a few things you can do from a dietary perspective if you would like me to offer you some advice in the comments etc :)
Hi Alice, this sounds great, do you mind sending me an email here: hello@beyondbodycoach.com
@@WhatMiaDidNext Will do :)
MIa! I am so sorry that you are struggling with such a horrible issue. I can't imagine the type of strain that must put on your daily life. I do not have endo, but have been an asthmatic since I was 11. I am only daily medication and must take my rescue inhaler with me everywhere. I have had anxiety attacks because of accidentally leaving my inhaler somewhere. My asthma is triggered by exercise which was always a problem when I was struggling with my eating disorder! I also suffer from a Body focused repetitive behavior called trichotillomania. Essentially, compulsive hair pulling. Although my trich is currently not too bad since I have recovered from bulimia which has helped my over all wellbeing immensely, I had years of constant back/neck/shoulder pain from always having my arm above my head to pull. It caused a big muscular problem where some of my muscles were overdeveloped and some were underdeveloped, which puts a lot of strain on your body. I was finally able to see a PT to help get that worked out, but I spent years just dealing with the pain because I thought it was my fault and was ashamed of what I had done to myself. Thank you for sharing your story and I hope you can get another surgery soon and it will help out some!
Kate Noel's podcast "take the cake" just did a great episode on Chronic Illness and endometriosis. The woman she interviewed was amazing! I suffer from chronic digestive upset, which is not nearly as serious as endometriosis, but it definitely impacts my daily life, especially as someone recovering from an ED
I am so massively tired and exhausted. Most of the times I don't even know how to get up in the morning. During the last couple of months it worsened substantially.
Also same story here with the pain killers. Every single month, cause I'd be in such bad pain and would be completely unable to work. Some years ago, I was at a workshop and the pain hit me like crazy. No pain killers available and I didn't dare to sneak out. I was in such big pain that I couldn't focus at all. I was so close to tears and waiting for this horrible day to end. Still, I never even thought of mentioning it to anyone because generally, the feedback of other women is "oh, you cannot take this little discomfort". My perspective only changed since a local radio station once raised awareness on the topic and they said it is not normal to take pain killers every month. However, I still think that people heavily disregard complaints about menstrual pain (mostly women ... probably these lucky 90%).
Important to take note of: Taking pain killers permanently damages liver and kidneys.
I definitely recommend this book, Mia - ‘Period Power’ by Maisie Hill. The audiobook version is great too if you feel too tired to read and just want something helpful and empowering to listen to on days where you’re needing to rest. 💕
It's somewhat validating to hear someone with chronic pain/illness talking about the uncertainty that covid brings on top of already existing issues.
Mia, I feel for you so much. I struggle monthly with both ovulation and menstruation cramping and fatigue and it's hard. No diagnosis for me yet but I have already found my small amount of discomfort a massive interference with my life... I can only imagine what you're going through. Thank you for sharing your experience, I will be sending you love and keeping you in my thoughts xo
Thanks for being vulnerable. Sending healing thoughts💜
You are 100% allowed to complain covid or no covid, your pain and struggle is no less real
Thank you, Mia, for this video. I’ve been looking for a video where you talked about endometriosis because once a month I’m in such insane pain. My body went into shock once and I had to be taken to the hospital but I’m always being sent home because no one knows what’s wrong with me.. and I don’t even think that doctors don’t care, it really is that there’s not enough female representation in politics. That’s very important to notice, thank you! Imagine men were suffering from something like this.. there’d be studies, clinics, a cure probably.. anyways, thanks for this video, now I know what I may be searching for:)
Yes!!! I was just diagnosed. I keep trying to go to work, only to have to leave a few hours in. I hate going anywhere with anyone, cause I don’t want to feel like crap all day, you know, it affects your mood, and I don’t want to be “Debbie downer” I’m so tired. I HATE taking pills, and yet, I have to take at least 2 every four hours, just to cope. I woke up this am at 4:00. In pain. Always in pain. It never goes away. I am starting to learn as I’m researching this that there is no cure, and I’m just going to have to live with this. How can they sew a mans severed penis on and make it work again, and they can’t fix endometriosis!?!? It’s not for lack of specimens. 1 in ten woman, and no cure? There was only one guy that I knew of that got his dick cut off, and they fixed that right away. Back to shooting porn in no time. And that was decades ago. What is wrong with this picture? I wonder how many women’s partners have left them because they can’t have sex with them anymore? Mine accused me of making this pain up to avoid contact with him. After 12 excruciating hours in the ER, they told me I had endo. They gave me ibuprofen, and sent me home. When my husband touches me, it sends pain waves coursing thru my body. He says I recoil in horror when he touches me. So now, it’s the “guilt” I’m supposed to feel for not being able to give my partner what society says is my duty. Can’t leave him if I can’t work. What quality of life? I can’t live like this. I pass out from the pain. It gets worse every month, and the last one put me in the ER. I don’t know if I can handle what the next time will do to me. I have an appointment in a few days. Hoping, preying for answers.
I finally have a referral to see a specialist to get surgery to get a diagnosis for Endo in October. My iron is extremely low and I’m getting my first infusion in a couple weeks. I’m so tired and fatigued. I have horrible chronic sciatica pain in my legs. My periods are awful. It’s nice to know I’m not alone in my journey and struggle.
I would like to hear more about your journey. If there’s ways to help people understand like family and friends. I go back-and-forth between feeling like I need to ask for help and also feeling like I should just be more private or entirely private
Sending spoonie solidarity and love 💜
I have fibromyalgia and it sucks. Invisible illness sucks. Ableism sucks.
I will say I feel it's important that whatever organization you focus your energy on to is trans inclusive. I think it's important to note that not all people with endometriosis are women, and not all women have a uterus.
Sending love back to you. And agreed re trans inclusivity, I try to be careful with my language and refer to 'people who menstruate' when I talk about this.
What Mia Did Next As a non-binary person I just wanted to express how much I appreciate that. Thank you.
Celiac disease. Auto immune
Mia this video is Me . I’m crying because finally I don’t feel alone . Your words ARE MINE ♥️.
Migraines, poly neuropathy, the list goes on and on . I lost my mum who is my everything a few years ago ( to cancer ) just like your dad. Since then my auto immune diseases . Are much worse . Especially This year . I’ve been watching you sweet one . Since day one . And I can relate to each video , each podcast . My mum had celiac disease as well . And also other neurological problems . She exercised each day , nothing stoped her . But Cancer ( pancreatic ) got her . Her body was use to pain . Within six months she passed . I’ve never spoke of this on a platform ever . But you . Sweet Mia I. Will . You have suffered so much pain . And you keep going ♥️. Just like my mum and myself . With COVID it has made me that much more sick , scared , sad , very Lost . I have a wonderful doctor that after years of going around the world 🌎 trying to find help . All doctors either laughed at me . Or said is all in my head . When I found my Doctor he changed my life . But these diseases ( Auto immune) never go away . But what we found is that (STRESS) is the worst thing for us . For anybody really . But my body can’t fight as others . So on top of so much pain and sadness . This COVID has made my diseases Soar .
But there is somewhat of a silver lining . They told me I couldn’t have kids . In 2008 I had a beautiful healthy boy . And I’m married for over 24 years . He’s my everything. And he’s stood by me through it all . But these past months . I’ve truly said so many times . I’m not me . I stoped exercise , even walking my sweet girl 🐺. Like I did before . And all I say is WHY ME , WHY NOW . And I’m not complaining just like you said Mia . But pain is pain . And Stress is there time to shine ( if that makes sense) . I’m so sorry that you are hurting emotionally and physically. From the huge loss of your dad . To your grand . Let alone a eating disorder that truly we fight each moment . But you my love are a strong , beautiful Human . Who brings so much awareness to the (Whole World 🌎 ) . I know you will fight this . You already are each day . I’m going to ask my doctor . And I will get back to you with as much info as I can get . But if your body is saying rest . Even on the couch 🛋. Let it . Our body’s are all Diffrent but yet we are all struggling to feel better . And I find Stress is the killer . And we are all so stressed . But with diseases. It’s that much more Hard To Deal with . Please know how much you have helped Us All . Through all that you have been through . And your Mum is right . By telling us . We can finally help you . As you have always Helped Us . I will show my Doctor this very Raw but very needed video 🙏🏼 And I will write all that he tells me . Please hang in there 🦋 MIA 🦋. Listen to your body ( as much as you can ) . And I know you will not only get better . But bring attention to humans that are in need of that voice that you have always used . Your a survivor sweet one . And a true beautiful Human . I truly am blessed I found you . (We All Are ) To be continued. Until then rest and know you will fight this head on . With much love 💕 and much health Alexa 🌱
So brave xx stay strong and well done for sharing xx
I have two invisible chronic physical illnesses (Meniere’s Disease and Graves Disease) and am in the differential diagnosis stage for a third. All of them have been complicated. Meniere’s Disease isn’t life-threatening, but it is hugely life-altering. I’ve learned that I have significant physical limitations, and I have to honor those limits or my physical and mental health will let me know very quickly.
It sucks having severe limitations, especially when you’re young and it doesn’t seem “fair.” I’m 34 and have had Meniere’s for almost a decade. It has been a roller coaster the whole time. Even though I had the last resort treatment and things have been going better, people assume that must have fixed everything. Spoiler alert: it didn’t. Life is livable now, but my new normal is nowhere close to my old normal. I still can’t do full time work for more than a couple weeks in a row without crashing. I still have days and weeks where my vestibular system hates me. Coworkers in my temp job ask why I’m there and not working a “real” job somewhere else, given that I look young and healthy. People who know I have an engineering degree wonder why I’m not working in that field anymore.
When I tell people I have a vertigo disorder, they say things like, “yeah, I had vertigo once; have you tried X, Y, and Z?” I stay polite and tell them I have one of the best specialists in the state and we’ve tried all of the treatments that would help my specific disorder. They don’t understand that there are different types of vertigo, and that their one time experience isn’t the same as having episodes for hours at a time, multiple times a week for years in a row. They get offended if I’m not interested in trying their preferred ultra-restrictive diet that cures everything. Depending how close I am to the person, I sometimes say “that would be a quick trip back down the anorexia rabbit hole.”
Fun story to piggyback on your experience with pain meds: the medication I take to relieve vertigo removes the filter between my brain and my tongue, and causes partial amnesia starting from when the meds kicked in. Inside thoughts that should’ve stayed inside my head were suddenly coming out of my mouth, and I couldn’t remember the next day what I’d said. Those weren’t advertised side effects; it was very interesting learning that’s what was going on and figuring out how to mitigate it. My husband found it very amusing.
Therapy and my faith helped me make peace with my new normal. There are still times when I have flare-ups and things are worse, but I feel a lot less down about it now than I used to. Even in the midst of all of the health issues, I’m content with my overall life today, so it’s a decent assumption that I can be content tomorrow. Life is nothing like what I’d imagined it would be, but that’s ok. We’ve decided that it wouldn’t be wise to have children given my limitations, so I’ve had to come to peace with that as well.
My mom has chronic illness, nerve pain in her groin area. It gets in the way of her doing everything, all she can do is sit in odd positions to try and releve the pain. I feel conflicted because she has put off going to therapy and dealing with her mental illness for my entire life, constantly coming up with reasons why therapy won't work for her and blaming others ect. and now she has developed this chronic illness and although I know she's legitimately in pain I get so frustrated when she says she could never sit down for therapy, or go out to support groups ect. because of the pain she is in. She was always telling me while i struggled with my eating disorder that I needed to step up and take control of my own recovery, which I have. I want to tell her the same thing because I see her blaming chronic illness now as the reason she can't go out and take control of her recovery from abuse in childhood. I guess what I am saying is: I don't want to be insensitive because I truly don't know the daily pain she's in, and, should I really expect that she's now never capable of doing anything but lay on a couch? how can I support someone with chronic illness while not being enabling and not babying them? sorry for the venting.
I have endo as well. I’m so sorry you are suffering so badly from this life altering illness. I would not wish this on my worst enemy. I have given birth 3 times and I would say endo has been more painful than some of my labors. I will keep you in my thoughts and prayers ♥️
Sending love and kindness ☀️
i’m also dealing with extreme fatigue 2 weeks out of the month and am trying to get answers from my doctor :( i feel for you, it’s so frustrating to think that there isn’t a real solution for the pain and fatigue
Love you Mia! I don't have endometriosis (that I know of) but I do have PMDD and I'm currently experiencing extreme fatigue on my cycle. PMDD isn't as severe as endo but I feel your pain. Sending love and hugs❤️
Gosh I'm so sorry you are suffering. The only thing I have heard is that some people feel relief with a Tens machine, but unfortunately it is only about 30%
I'm so sorry that you have to deal with this. I can't relate to what you're going through because I don't have endomitriosis. I do have cronic illness though, I suffer with hashimoto thyreoiditis (I don't know if it's the same word in english...) and my period is, lets just say, unreliable. I don't get it for a couple of months and ofcourse my ED doesn't help with that issue. But I find it hard to be taken seriously with my concerns, it's always like "Why do you want to get your period?! I would love to not have to worry about it!" And I find this so offensive. Sure, it's nice, I rarely have to deal with the period itsself. But I have to deal with my illnesses daily. (Mia, I hope this doesn't come off as offensive, because you suffer so much with your pain, I really don't mean it this way.) It's not nice to not know if I am able to have kids some day, it's not nice to see every month that my own body destroys part of my organs! If I have a flare up, I can't concentrate, stay awake, move properly because my energy level is so low. And I can never predict when it will happen, or when I will get my period unexpectedly and am not prepared for it.
Anyways, sorry for the ramble, I hope this doesn't make anyone feel like I'm complaining about a minor issue compared to the insane pain you go through every month. Wishing you all the best :)
"Funny" story: Back when I didn't know, I had Endometriosis, I felt so good, when my ED had me down to a weight where I didn't get my period anymore, 'cause I was finally free from the pain. And now, with a healthy weight and periods, the pain kinda triggers my ED thoughts.
Sometimes when you have chronic illness you remember that your life is and will always be groundhog day. Those are hard days. I've had a rare and incurable disease for over 20 years almost 30 now actually, none of my friends or family understand what it's like as I look relatively normal, but it's a constant struggle and so many drugs to control it.
I have a mild case of endo, my mom had it severe to the point that I almost didn't exist, and I have other chronic issues. They think mine is only as mild as it is because with my family history, they put me on BC to stop my periods from the first onset of symptoms to preserve things as best they could. Just sharing to say you're not alone and sending you love and hoping you get some relief soon in some way. Healthcare for uterus havers is very lacking in the worst way with research and intervention without major surgeries. It's so bad. My main illness is ehlers danlos though which is invisible and stupid, too.
I have chronic pain in a lot of the same places you mentioned, to the point where significantly impacts daily life. Part of the issue is scoliosis for me, but I’m wondering if endo is contributing as family members have it too. Apparently it’s hard diagnose much less manage :/
Birth control helped a lot of my diaphragmatic endo symptoms. Then my ED took them away when I lost my cycle and none of it has returned. I feel for you. It's misery.
Having chronic conditions which can fluctuate wildly is hard too. Comments like 'you seemed fine yesterday etc etc' can be so hard to navigate.
I had no idea it was that common and also didn't realise it could grow around your uterus!! Im sorry you have to endure that!!
I have gastroparesis and feel pretty much the same way about it...no good way to treat it, not much research done about it, etc. I feel nauseated and throw up all the time (that might be tmi) and it put me in the hospital for 10 days in January. I also have a chronic pain condition that I developed 6 yrs ago after an injury. (And of course I'm here bc I also have a looong ED history.) I get it. It all sucks.
I also have a chronic illness and wish I had the option to listen to my body. I have to work long shifts in a physically and emotionally demanding job, whilst dealing with my symptoms. I am exhausted but unless I retrain in a new career this is my only option.
yep, got it too. I hear you.
My daughter possibly has PCOS and trying to get the dr to listen to her is so hard. Myself I have IBS and acid reflux and that has been a huge issue during covid and my dr really wont listen to me and all he says its because of my mental health and increased stress. Having a hidden illness sucks so bad. The exhaustion I feel daily really really upset me
Sending love 💕
I had to see half a dozen family practitioners/gynecologists who ended up dismissing me because I was unhappy with their care. They tried to tell me my pain was in my head from being raped. The only reason I divulged that information was to explain why I had taken Plan B so many times. I was not hysterical in my explanation, but I was still dismissed by the doctor as simply being drug seeking and or having psychological pain.
Then I found an OB/GYN with a holistic physicians health alliance who did a laparoscopic surgery with a da Vinci robot. They thought it would take about 30 to 45 minutes and it took over four hours. So that’s why he said I was owed an apology because my pain had been dismissed four a whole year. Unfortunately, because my hormones never were addressed, even by this supposed holistic doctor, I believe it all just came back. Now it’s back to no one believing me and also being too sick to make it on time to appointments with the doctor so he dismissed me a while ago.
I know what you mean by looking fine, but not feeling fine. It’s either that or I look like crap and people accuse me of using drugs or having an eating disorder. Im either feeling so nauseous or am in too much pain that I lose my appetite or I just can’t afford food. I would love to eat. I just wish people would listen to what I say the problem is instead of judging me and trying to see things that aren’t there.
I am certain I need another surgery again. The problem is I know it was a very difficult recovery the first time and it left me unable to work. Never recovered financially from that, especially with the impact of the pandemic on my small business after that.
But I know my hormones are all messed up, as I started having these issues after using various birth controls and taking Plan B a few too many times, once while using birth control. Started with migraines that were insufferable then stabbing localized pain, generalized burning pains, and aches down my legs became constant and daily. I also have hypothyroidism it’s hard enough to get a doctor to prescribe me natural thyroid medication because I don’t do well on synthetic. I asked doctors to measure my sex hormones but they don’t. I would have to cancel my Medicaid in order to see holistic doctors out of pocket.
I’m just worried until my hormones are fixed, surgeries will be more detrimental if it will all just come back and if the recovery will be like before.
If you have any guidance I’d appreciate it. I feel like I know a lot about this topic, but for some reason I can’t seem to help myself past this point.
Sending you love xxxx
Why is endometriosis commonly diagnosed so late? Did you have symptoms in your teens already (such as extreme pain etc.) or do you think it developed later on? I'm very curious!
I've been wondering for years and years whether or not I had endometriosis. On the one hand, my periods are really bad and accompanied with weird symptoms that no one else I know has but, on the other hand, I read testimonies of people who do have endometriosis and can't even get up from bed for a full week and I think "I'm not that bad. Who am I to say I have this illness when it's probably just bad period pains?". One of my most striking symptoms is very strong pain in my thighs, all the way down to just above my knees. Does anyone know if that sounds like something that could be caused by endometriosis or have I just drawn the short end of the stick in terms of weirdly painful periods?
Anyway, it's always great to hear someone share their experience with it, thank you Mia !
I don't have endo but I have Chronic Fatigue Syndrome so could relate to stuff here. Chronic Illness is no fun
Heya, kiwi with multiple chronic illnesses, including endo and chronic pain. I was told for 7 years that I couldnt have endo, turns out it was found in a lap for another thing and noone told me or my drs, I'm having my first lap excision in 6 weeks ... eeek! I would be very keen to hear you reach out to Qendo (Queensland based endo support but also has a really good app) and Endometriosis Australia, they are both beautiful and on Instagram. The other which could be fun is bridget Huthwhate (unsure if that's how its spelt), she is a radio presenter in Melbourne and runs endogram on insta, she is a beautiful human and just had her 3rd(?) Excision, first private I believe so would be awesome to hear a collab there 😍😍
Much love and take care to you so much
I call venting, ‘productive moaning’. Indulge xxxxx
Take the Cake Podcast with Kate Noel has Jay Rishe (who suffers from endometriosis) on an episode. Jay makes reference to support groups in that interview.
Mia read reply to Raeven I was talking to both and got carried away! I understand how you feel, and it’s even worse because you’re so young, I wish I could help🥰
I feel your pain!!
Medical medium has the cure for endometriosis in his book “cleanse to heal” might be worth a look! Sending you love! ❤️💖
Dr. Neal Barnard
Omg tell us more about this! I don’t know about this much. I’m in recovery and my periods are getting worst n worst . So I’m gonna go look this up now lol., because I have days I just spend in bed because of pms or the week before it
Mia, how do you feel about the idea of body positive attempt at weight loss. Is it possible to want to/try to lose weight because you personally want it for yourself (ie my body is in pain bc of extra weight) and still be body positive and avoid eating disorder triggers? It's so complicated because my body actually hurts and feels bad being heavier (which I know isn't the case for all people in larger bodies) but I have struggled with your dieting and disordered eating in my past. I dont know how to focus on weight loss without becoming obsessed and disordered. When I intuitively eat I find that I eat a lot of sugar and I do go on walks, swim and do yoga but my pain causes me to not get a lot of activity. And all I'm seeing is my body getting bigger with time