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@@bridgetc.marinaccio8024 Thank you for checking in! I’m doing okay…lots of ups and downs. Having a chronic illness is hard, not knowing from day to day how you’ll be feeling and what you’ll be able to do. I am planning on filming a very overdue update video about the last few years:) Hope you are well also!

I'm so sorry you have to go abroad for treatment! It is so hard here in Canada to find appropriate care/treatment, and if you are in a province that has an endometriosis specialist, the wait times are usually unmanageable. I have considered going abroad as well as the level of care seems far superior to what is offered here. I hope you have a great experience abroad and come back here to Canada feeling better than ever💛

Thank you for your kindness! Sorry for the delayed response…I’m doing okay at the moment. I think my situation would be similar to anyone with chronic pain where you have good days/weeks/months, and bad days/weeks/months. I went through a grieving process, letting go of the person I used to be and try to make the most out of who I am now which I think was extremely important. I really should do an update video at some point!

Of course! Find me @shantelleannemarie

@@shantelleannemarie6190 thanks I sent the request ✨

I’m so sorry you’re going through such a tough time right now😔 Its hard to not be able to see an end to the pain when nothing seems to help. I had my second excision surgery a year and a half ago and I have finally had a period of time with less pain and it makes me hopeful. I hope you find a treatment that helps you💛

Happy to hear Danazol worked well for you! I can’t remember the dose I was on as it was quite a few years ago now, but I had a rough time with it. Everyone is so different…so hard to say what will work and what won’t.

I’m so sorry you also had trouble with Orilissa😔 It’s been such a long time since I’ve been off of it and have had some lasting side effects…I really hope you don’t continue to have problems years later!

Thank you! I hope you are able to find something that helps you with your symptoms💛

It has been a long time since I posted the last video! I haven’t been feeling well enough to film an update. I was put on the waiting list for my second surgery in January of 2020. I stopped Lupron at that time as I was told by a specialist in NYC that I should be off of this for at least three months before surgery as it can diminish the appearance of lesions, making it harder to see them and therefore remove them. With the pandemic I ended up only having my surgery in January 2022. I am not on any treatment currently as I’m not wanting to deal with the side effects of those right now. For me, Lupron worked a lot better than Orillisa with less side effects. But with that being said, everyone is so different and medications can work for one and not the other. Personally, I hope to never take either of these again because of the effects, but when the pain gets worse, that seems to be all that is offered😕 I hope you find something that works for you and make a decision you are comfortable with💛

For sure! Here is the link to his website: www.preventmiscarriage.com

@@shantelleannemarie6190 appreciate!!! I started taking orilissa 8 days ago but it’s side effects are unbearable and after listening to you story I decided to stop taking it and seek a second opinion ;)

@@cassandrawinegard3136 Good for you getting a second opinion!!! It’s not always an easy choice, but you deserve to feel comfortable with your decision on treatment. I hope you find something that helps with your symptoms💛

yes, she has music in the background. 😆

I did take turmeric for a long period of time, but I honestly don’t think it did much for me. My symptoms just continued to get worse. I ended up stopping the turmeric because it was hurting my stomach. Everyone is so different though, so I’d say it’s worth a try!

Ugh, I’m sorry you’ve experienced the same side effects! It’s been a long time now since I stopped this medication and I’m still having neck soreness and headaches, and the brain fog is still terrible😕 I hope you have a better experience with it and are at least able to get some symptom/pain relief💛

😕

I’m sorry you feel so terrible and Orilissa isn’t working for you either😔 I hope you are able to find something to help relieve the pain💛

Ugh, that’s awful😔 Good luck with your surgery tomorrow! Wishing you the best outcome💛

I honestly don’t remember at this point if I had any bleeding after starting Orilissa…it was quite a while ago. I believe I was on Lupron before starting this, so I don’t think I was getting my period yet, and I didn’t get my period the entire time I was on it. Everyone is different though and the dose could be different for you than it was for me. I took Orilissa continuously with no breaks, which I believe is always the case for this medication, but I can’t answer that question for you as this is something you need to talk to your doctor about.

I also had a laporscopy in January still having the pain if not worse.

@@alexuskeen50 I’m sorry you had the same experience as me with Orilissa, and that you’re still experiencing pain after surgery😔 Can I ask, did you have excision or ablation surgery? I definitely had better results with pain relief and less side effects from Lupron, but with that being said, it has its side effects and risks as well, and not everyone responds well to it either unfortunately. Whatever decision you make, I hope you find something to help relieve your pain💛

@@shantelleannemarie6190 I had excision for sure, and if ablation is where they carderize then yes I had that as well! I am willing to try everything before I just “deal” with the pain. May I ask what kind of surgery you ended up having after you stopped with the Lupron? And how you are doing now.

@@alexuskeen50 That’s good you at least had excision, but it’s too bad you didn’t receive any pain relief! I had excision only as that is supposed to be the “gold standard” with endo surgery. I had my surgery quite awhile ago and since the pain returned after about 6 months to a year (gradually worsening), I have been on Lupron, Orilissa, then Lupron again. I stopped Lupron to get ready for my second surgery as you are supposed to be off of it for at least three months prior (Lupron suppresses the endo lesions, making them hard to see in surgery), but then COVID hit and I haven’t had my surgery yet. I’m surprisingly doing fairly well pain wise, but exhaustion is still a debilitating symptom for me at the moment😒

@@shantelleannemarie6190 thank you so much for the help, I’m going to try the Lupron. I’m nervous because of the mental side it seems to talk about. But otherwise willing to try to reduce pain. Are you still using Lupron currently?

Jen C Thank you for you lovely comment💛 The more I share, the more I find we all have such similar issues dealing with this disease. And unless you've experienced it, it's hard to fully grasp the impact on someone's life. I hope you are able to get some answers and find a way to deal with symptoms. Take care😊

Yonathan & Nancy It's been awhile that I can't remember exactly how long they lasted, however, it wasn't very long because my doctor put me on replacement hormones, so I was taking progesterone and estrogen in small doses to prevent the hot flashes. These worked extremely well!

katrina edwards I am so happy you have had good benefits from taking Orilissa!!! Everybody is so different and can find benefit through different treatments. That has to be one of the best feelings, when you finally get some relief and can start to feel more like yourself again💛

I'm so sorry you're going through such a rough time right now😥 I completely understand, the mood swings I believe are worse for those of us with endo and the pain picks away at your last nerve. Constant pain changes a person and makes you feel like there will never be a good day again. If you are not feeling supported by your husband, please find some sort of support in your area. Do you have a local Facebook group for endo sufferers? Or maybe, if you are financially able, find a counselor/psychologist. I have found great comfort in my local support group and I do speak with a psychologist on occasion as well. The support groups are such a great way to not feel so alone in what you're going through! This is such a rough time as well with restrictions from COVID-19 so if you at all feel like you are spiraling, please call your local help line. I hope you are able to find something that helps you through this❤

@@shantelleannemarie6190 thank you for your supportive and wise words. I've booked in for some blood tests tomorrow. I stay away from antidepressants as the last lot had me suicidal a week later. I hope this is just a monthly thing and not my new norm again.

@@decoder3449 I hope you are able to figure out what's going on and find some support. There are so many of us in the same situation and I hope you are able to find some comfort in that...you are not alone💛

a jsm I'm so sorry you've been going through such a hard time😥 I hear you...this medication was bad for me as well and even though I've been on Lupron since stoping Orilissa, as well as being off of all meds for the last four ish months, I still feel like I'm not back to normal! I hope you are able to feel more like yourself after being off this medication🙏 Even though excision surgery is the gold standard for treatment of endo, our doctors are still trying these horrible drugs...but sometimes you just take them in hopes of a moment of relief from the debilitating pain. If your doctor is not listening to your concerns and continues to push meds you're not comfortable with, please seek out a second opinion. There are good doctors out there...there's a list of approved excision surgeons on Nancy's Nook to find one close to your area. Hope you find something that gives you some relief💛

I've been on this medicine for 2 years I have liver failure a rash over my body which my doctor said to take it at night with Benadryl every night stiffness in my bones achy bones brain fog can't remember I feel sick and tired all the time. However I've stayed on it because I have endometriosis in my stomach and my intestines as well as my uterus and have had blockages and surgeries in my intestines from this endometriosis. However it is horrible

Carrie Jansen Oh my goodness, that is just horrible! I have to say, I have not heard much on the positive side for this medication. I hope you are able to find something else that helps keep the symptoms of endo at bay and the progression of the disease💛 Perhaps it is time to seek out a second opinion? This is no way to live your life, crippled by the side effects of Orilissa😥 I know this is a struggle and we are just wanting to find some sort of pain relief and to stop this disease from getting worse, I am just worried for you that the other effects of taking this drug will be damaging to you. I continue to reference Nancy's Nook for a list of approved excision surgeons in your area, however, I don't know your person history and if you've already sought out surgery for treatment. Hang in there💕

@@shantelleannemarie6190 I have had 9 surgeries. I believe that's how it spread to my stomach and intestines. I was on Depot provera for 3 years and then Depot loupron for 5 years. So I have no other options. At be this point if I go septic again from a year in my intestines I might not make it! So I'm open to any option that are out there. I've had to surgeries for the endometriosis or enter Metroid in my intestinal area

Carrie Jansen Wow! It sounds like you've tried everything😔 I'm so sorry you are going through this...it sounds very scary! I can't imagine how frustrated you must be at this point. If at any point you feel your doctor is not listening to you or able to help you, please seek out a second opinion, even just for peace of mind to know you're getting the best possible care and treatment. Keep on fighting this disease and I hope that something will help you💛

Shar Hankins I don't personally feel like Orilissa did anything for me. I have a video on my final review of the medication if you want to check that out. After the first two months of taking it, I did feel I had about a 50% decrease in pain, but had extremely bad neck pain which led to headaches. After that initial decrease in pain, it just got worse and worse again, and the side effects were worse also. I stopped taking Orilissa and went straight back on Lupron. I have such good results with Lupron, with a significant decrease in pain. But, with that being said, it is very hard on your body and everyone has different results from it. I'm awaiting my second surgery right now and would highly recommend seeking out an endometriosis specialist in your area (check out Nancy's Nook for a list) to see what they would recommend. You have been through so much already...I hope you are able to find something that relieves your pain💛

Shantel Leanne Marie thank you for your response, if I don’t take orillisa it’s back to letrozole and that’s a chemo drug and weakens the immune system... who wants that right now ?! Not me with Covid-19 ! I’ll check out that Site, that’s for the recommendations!

Al Ba My understanding is that it is supposed to shrink the endometriosis lesions as well as put you in a state of menopause just like Lupron. However, while it did put me in a state of menopause, my cysts did not reduce like they did on Lupron. I think everyone will have a different outcome with this though. For myself, I respond significantly better to Lupron and have a significant reduction in pain, but not with Orilissa. And overall, excision surgery is by far the most effective treatment for endometriosis if performed by a qualified surgeon💛

Taryn, thank you for sharing! I'm happy to hear you had some benefit from Orilissa, but that is really too bad about the mental health side effects, as well as the weakness and joint pain that you experienced:( I'm happy for you that you stopped the medication and hope that those side effects go away eventually! Yes, that is something that is supposed to happen with both Orilissa and Lupron...your endometriosis lesions are supposed to reduce in size which I had success with while on Lupron, but for me I did not have that result with Orilissa. Something I am going to touch base on in my next video is about how having surgery while on Orilissa/Lupron...it is not supposed to be optimal as it does disguise and shrink the lesions, making your surgery less effective as these lesions are known to come back after being off of Orilissa/Lupron for over three months. I hope your surgery went well and you are able to be as close to pain free as possible without the use of these drugs:)

Talia Spencer That sounds horrible!!! And what a scary experience to have every time you have cramps😥 I understand your frustration and the feeling of desperation to have the pain just stop already. I'm sorry no one has been listening to your concerns...with endometriosis unfortunately that is often the case💛 Keep searching for that doctor who will listen to you and one that gives you hope with a trial of different treatments that may give you at least some relief! There are good doctors out there. I'm not sure what your ability is to access mental health services, but if you are able to, please seek out help (even just through the help lines) if you are feeling hopeless. Sometimes you just need to tell your story to someone and have them listen🙏

@@shantelleannemarie6190 Thanks Shantel, I appreciate it.

Hope you have found some relief. Those are severe reactions. I sympathize with you of your illness and suffering.

Kittie O'Donnell You are not alone with experiencing the neck aches and headaches! This is seeming to be a main side effect of Orilissa. With the higher dose, I started to get frequent migraines. I'm happy you have had at least some pain relief on the higher dose...any bit of relief is a win! I'm curious to hear about how you do coming off of the medication. Hopefully you can sustain some of the relief up until your surgery💛

Kittie O'Donnell I had a D&C about 6 years ago and it resolved nothing. I still have the excruciating pain from my menstral cycle. I hope it helps you though 🙏🏾

@@shantelleannemarie6190 Two days off and I still get hot flashes. No headaches and joint pain has lessened quite a bit. I read that I may not get my cycle for a month after discontinuing Orilissa. I am just happy if I make it through the week as polypectomy and d & c is 7 days away. Also, my primary care physician did bloodwork for my surgery and my cholesterol is up. That surprised me because I am vegetarian (although not vegan). Orilissa can increase cholesterol levels as I have read.

@@Gigibabe38, the polypectomy and d & c is more exploratory than anything. I was diagnosed with adenomyosis. So, I have a cyst, thick endometrial lining, polyps, endometrial nodes and an enlarged extremely retroverted uterus that is severely scarred because of bleeding into the uterine wall. The polypectomy and d & c are for a biopsy and "clean up" before my partial hysterectomy in January.

Kittie O'Donnell I would imagine it will take a little bit for it to get out of your system...I'm crossing my fingers for you that your cycle won't come before surgery🤞I know it took about three months for me to get my first cycle after stopping Lupron, but I'm sure it's quite different with Orilissa. Nice at least the headaches have subsided, but hope those darn hot flashes stop soon!

Sheryl Cruz I completely understand why you would choose not to take this medication, or any of the others offered for that matter. You are right, there can be horrible side effects and long term, irreversible damage done to our bodies and minds. It is not a cure for endo, however, there is no cure at the moment so we are all just trying to find a treatment that makes our quality of life better. In my understanding, excision surgery is the gold standard for treatment of this disease. But for those of us who have already had it, are not being offered a second surgery at this time, and still have pain every day that prevents us from living a normal life, it may be worth a try. I have not had a good result from Orilissa and am definitely not trying to convince anyone to take it, just providing ppl with my experience in hopes it helps others in some way. I do wish we had better options for treatment, and I hope you are able to find something that works for you💛

OCBeauty Perfection I have no idea why there are only 28 pills per pack! My theory is they could only fit that many in because of the unnecessary bulky packaging they come in🤣 As for your second question, no, I did not stop taking the pills such as you would on birth control. I don't know if it is ever recommended to only take the pills for 28 days with a break in between as I believe this would defeat the purpose...but with that being said, I'm not a doctor and I could be wrong. If you are planning on taking Orilissa, just confirm this with your doctor. I have been on this medication for months now with no break.

Thank you for your response and your video. 💕

Taylor Pearce Thanks for sharing! Can I ask, how long were you on the higher dose before seeing a reduction in pain? I have been on it for about a month and have had no reduction in pain and have been spotting for the last week. My doctor is suggesting for me to stay on it for a while longer. I feel your pain with the fatigue😔 I'm so exhausted from the moment I wake up. I hope your surgery has a great outcome with how you are feeling with pain reduction and increased energy levels!!!💛

Shantel Leanne Marie I would say around 1-2 months I saw a difference. Now that I’ve had the surgery I definitely feel a difference for some parts

Taylor Pearce Okay, that's good to know! Thank you! I will just continue on in hopes it gets better soon😊 And that's so great you've noticed a bit of a difference so far with surgery...hopefully you just continue feeling better and better!

LadyStephyLynn Makes it so hard to know what to do! Hope you have luck with some kind of treatment💛

Jessica Johnson The "noise" in the background is just low volume music I put in the background of most of my videos. I find it nicer to watch a sit-down video with a little background music😁 Maybe that's just me🤣

Amanda Mathews I hope you have positive results from Orilissa!

Kittie O'Donnell Thank you so much for sharing your story! You've been through so much and I'm sorry you have suffered for so long with no diagnosis and improper treatment. As women, we are so often ignored when we bring up concerns and told it's just normal and part of being a woman. But by sharing our stories, the hope is that another person will hear something familiar and push their doctors to look deeper. I really hope you find some relief with Orilissa! And yes, my packaging is the same lol, so hard to get the pills out!!! I hope you also feel comfortable enough at some point to share your story and struggles with your family...we all need supportive, caring people in our lives who we don't have to hide our pain and struggles around. Take care❤️

Thank you for your response. My cycle just started an hour ago, four hours after taking my first dosage. I feel pain daily but more intense just before my cycle. I still didn't expect it so early as it usually begins on the 7th of each month. As far as sharing the info with my family, I have tried in the past, but they are pretty dismissive of the whole thing. My mom and sister have periods like the commercials depict: doing cartwheels at the beach wearing tiny, white shorts. My mom is 60 and still has a menstrual cycle. My dad = no clue. I won't tell them until I have the results of the biopsy to check for precancerous cells. They tried before with the saline ultrasound, but was unable due to the "extreme" retroversion of my uterus. But thanks for the support.

Kittie O'Donnell Wow, I'm so sorry your family is dismissive of your struggles and not supportive😥 I hope you find comfort and support with this channel, myself, and all of the others commenting and watching. We understand your pain and know your struggle is real❤️ I found that Orilissa did take about two months to get full effects of the medication...I still have a lot of pain, and have not had the best results from this, but some have and I hope you're one of them🙏

@@kittieodonnell7215 im getting prescribed orlissa , how are your symptoms after 4 months? i was moved by what you said . for me im conserned about liver and mental health symptoms. please let me know

@@sunsetlover3294 , I was on Orlissa from August 31, 2019, until two weeks before Thanksgiving as I was scheduled for a polypectomy, d & c, and hysteroscopy. I didn't know all the details until a week before the surgery. Once that was done, I got my cycle on December 13, 2019. It was just as painful, but had shortened by two days. During my intake or Orlissa, my symptoms were pretty consistent. I had more and more hot flashes which were terrible and my back, neck, and shoulders ached. I mean they hurt consistently with little relief. Stretching did not help to any great degree, but I did it anyway as much as possible throughout the day. OTC pain relievers didn't alleviate it either. I had gotten two really, really bad headaches. But like I said, it was better than the pain I experienced during my cycle. I am currently on bedrest as I am recovering from a roboric hysterectomy which was performed while I was on my cycle. Originally, I was told that my uterus would be removed. But during the polypectomy, my gynecological oncologist was able have a better picture of what was going on. I still have my ovaries. But along with my uterus, she also removed my fallopian tubes, my cervix, and a benign ovarian cyst. The tests came back normal. But I had a lot of things going on including fibroids which had not been mentioned before. I want to share this with you also: I had the best doctor and the hospital staff was amazing and attentive with the exception of my recovery nurse. I kept going in and out of sleep of course. But at one point upon waking, I explained that I really had to use the bathroom. At the time my husband was present. But the nurse said that I did not because I had a catheter. I insisted that I did because of the pain and the pressure that I was feeling. It was IMMENSE!! She told me that was normal and to press the morphine button. I told her that I did not want to overdose because the pain was not going away. She said, "That is normal. You just had surgery. " It did not feel normal. And that there was liquid in the reservoir. So, I am, in fact using the bathroom. I mentioned it several times over the course of a couple of hours in and out of sleep and with two more visitors. I was met with the same response. When she walked away, I called for another nurse and I tried to come up with some excuse to go to the bathroom as the pressure and pain were getting worse. I was greeted with a bedpan. I was able to urinate into the bedpan with the catheter in place. That is not supposed to happen. But I felt enough relief to go back to sleep. When I woke up I was in so much pain I was shaking and panicky. My original nurse returned and asked me if I was okay. I said "No. I am in pain and I have to pee." She was called away as she was informed that my room was ready which I clearly heard. When she returned, I asked her was it ready. She said, "No They are still cleaning it." I said, "I heard the lady tell you it was ready." She walked away without responding. Another nurse approached me. I asked her when I would be going to my room. She said, "Right now. I am getting you ready now." I explained to her about the bedpan. She was surprised: "You don't have a catheter? "I do." There was both liquid in the bedpan and in the reservoir. She consulted with a fourth nurse. Then she proceeded to investigate. Within seconds she realized that the tube was twisted. She resolved it and IMMEDIATELY the reservoir filled near completely so that she had to empty it before moving me and the pressure and pain was ALLEVIATED INSTANTLY. The fluid was backing up into my bladder. I was so grateful I almost cried! I thanked her for listening to me. From then on I only pressed for morphine a few times instead of the 114 times the machine indicated. I was inexcusable and excruciating pain needlessly for hours. Had my husband been permitted to stay in recovery with me, maybe things would have been different. But he had been waiting for me to go to my room for 1.5 hours. The nurse who responded and resolved the issue even volunteered her phone so I could notify my husband that I was on my way up to room. I am telling you this because if at any point you feel that something isn't right, in the kindest way possible speak up often and to anyone who will listen. I am currently on antibiotics for the symptoms of a bladder infection. But it could have been so much worse. It is a shame because everyone else before and after my time with my recovery nurse was EXCELLENT. Aside from her, I could not have asked for better care.

eugene edwards Oh my goodness, you've been through a lot😥 I can't imagine how hard a hysterectomy would be and the choice to have a partial and full hysterectomy! I hope Orilissa gives you some relief at least. I can definitely relate to being desperate for any type of relief despite any risks or side effects...a person can only take so much! Sending positive thoughts your way❤️

Did they take out your ovaries

It was quite a while ago that I was on Lupron so it's hard to remember all the little things I didn't like about it and the reason I stopped taking it. I remember having a significant reduction in pain and felt pretty good for most of the six months I was on it. I do, however, remember having bad body aches with my last three month shot and this was the breaking point of me wanting to come off of it. The body aches lasted for about a month and a half or two months and I just didn't want to do it anymore. I vaguely remember having a bit of trouble sleeping while on Lupron also, which I don't have on Orilissa. It's really tough to know what the best option is as everyone is so different. If I could give any advice, I would say to start with Orilissa because it is in pill form so you can quit at any time...if you don't have luck with that, then move to Lupron. It's just that if you choose Lupron, you are stuck with it for however long the injection is for...mine was the three month shot. So if you have bad side effects, there is nothing you can do about it for three months.