INTERSTITIAL CYSTITIS: MY STORY: VLOG: WHAT IT'S LIKE LIVING WITH INTERSTITIAL CYSTITIS
Вставка
- Опубліковано 1 бер 2019
- #InterstitialCystitis #IC #PainfulBladderSyndrome
INTERSTITIAL CYSTITIS: MY STORY: VLOG: WHAT IT'S LIKE LIVING WITH INTERSTITIAL CYSTITIS
In this video I discuss my journey with IC. The struggle with getting a diagnosis and what supplements have helped me thus far.
If you want to learn more about Interstitial Cystitis and what you can do for it, then keep watching.
As always thank you for watching your support means the world to me. If you want to help fund more videos consider donating to my Patreon account. I love making videos for my subscribers. If you would like to support the cause feel free to donate at:
patreon.com/nursingwithprofessorb
Follow me on IG: Nursing with Professor B
Join my FB group: mmini.me/NursingwithProfessorB
EMAIL: NURSINGWITHPROFESSORB@GMAIL.COM
Use of this InformationThe information included at this site is for educational purposes only and is not intended to be a substitute for medical treatment by a health care professional. Because of unique individual needs, the reader should consult his or her personal physician to determine the appropriateness of the information for the reader's situation.
Use of this InformationThe information included at this site is for educational purposes only and is not intended to be a substitute for medical treatment by a health care professional. Because of unique individual needs, the reader should consult his or her personal physician to determine the appropriateness of the information for the reader's situation.
Lord help up all cure us from this disease I just want to feel normal again
Amen sister.
I agree 😩
It’s so messed up to feel like you’re not normal because of it, I’m going through a major flare up as usual. I’ve suffered from this since I was a child and it has never gone away, it’s disrupted school, work and my personal life. I feel hopeless and disabled, I can’t even do my basic grocery shopping or do an eight hour shift of work without it creeping up and ruining my existence. I feel for every one of us going through this horrible condition.
Amen 🙏
Ameeen 😢
That’s exactly how it feels like its burning slowly with fire and no-one understands other than people who suffer from it
Sorry, you're going through this.
Yes, It's extremely painful. I can't work any longer mainly because of IC.
@@notindaclub6932 Please do your research go on a low oxalate diet you will go in remission I've had IC for 10 years Mandy she is on Facebook she helped me she educated me on IC she actually has the disease and she put me on a low oxalate diet really that's what it is Do your research and when you start your diet remember go really slow because if you go fast you're gonna be an extreme pain like I was but eventually it all goes away Because you'll be dumping oxalates and it's really painful So if I'm sure I can bet on it you are eating nuts any kind of nuts nut Butters have high oxalates spinach salad celery chocolate believe it or not coffee has no oxalates Yeah but the list goes on and on please do please do your research and good luck God-bless you you will be in remission in no time
Is it in the bladder or in the vagina ?
This is so helpful. Thank you for taking the time to share.
My pleasure
Thank You for sharing your story on You Tube! So sorry you have it and hopefully they will find a cure soon. It's a very difficult journey for anyone to have to take so God be with you and bless you.
Thank you for your kind words.
Thank you for this info!
Ive been dealing with pain now for over a year, when I went into the doctor the first time we did uti testing, negative, then moved onto ultra sounds and such from cysts, I did have one on my right ovary that was removed. Now, months after recovering from the surgery I'm still in just as much pain and my last ultra sound was clear of cysts. Came to youtube for help, thank you sooo much!
My pleasure. Best of luck to you.
I’m so sorry you’re going through this, to all of you suffering this horrendous condition, my heart and prayers go out to you, I know exactly how you feel, I’m going through the worst flare that I’ve ever had, and I’m a seasoned IC’r unfortunately, going on ten years for me, it has ruined my life, my social life doesn’t exist, I’m recluse and depressed, all I can do is read the Bible, pray, and lean on the Lord, because what I’m going through now, is not living, I’m barely surviving, and am only here by the grace of God… praying for you all, God Bless you, and bring you comfort and healing.. much love
Thank you.
Did you cure??
6 x years for me. Its robbed me of sleep, hence my ability to work and earn money. My relationship with my fiance...and old before my time. Wouldn't wish it on my worst enemy ...you're quitecright in your assessment...a living nightmare ♥️♥️♥️♥️♥️♥️
Thank you for sharing. Glad to hear someone speaking same language , understand from a professional and personal point of view
Thanks for watching!
You’re amazing
I’m crying
Thank you for making this video
My pleasure. I wish you all the best.
So happy I found this video. Just started this exact same journey. No diagnosis YET, but my nurse practitioner believes this is what I have. I’m glad that I am in full awareness. Would love an update video if you ever have a chance!
Thank you so much for sharing your story. So helpful to know I not alone!
Hello, thanks for watching. I have good days and bad days. Just yesterday I ate something and didn't take Prelief for it and I suffered all day. Today I am better though. I would say stay away from canned drinks. I was drinking an energy drink (green tea "all natural") the day all my symptoms started.
Thank you so so much for this video. Sat here in floods of tears because it is so relatable and I feel so validated listening to you tell your story xxx
Thank you for watching 💖🙏🏻
Dont drink milk. Helped me. Stop for a week and see how you feel
Bless you for putting out this video
Thank you!
I've been diagnosed 1.5 years ago. It took 2 years to get diagnosed. This disease is so complex and so many things are unknown about it , is baffling. The worse part is that it's an "invisible" disease, so telling people you are in CONSTANT pain , might reward you with a few weird looks and some " but you look good" " have you tried lowering stress" and other bs like that. Cutting all acidic foods and spicy foods worked somewhat for me. But this disease is HELL. Thank you for this video. Really nicely presented.
Yes, Val. It's hard when people can't SEE something. But just because you can't see something it doesn't make it any less real.
Hi i have been diagnosed with this illness last year it started with severe back pain but i sufferd for years with pain in my lower back and pelvic area but it went away and would return again but now the pain is constant the last year it nevers goes away just wanting to find out how does the pain in your bladder feel it feels like there is a bowling ball at the base of my bladder and horrible back pain it feels like i have ten paints on thats way to tight its really horrible cant take the pain anymore
Having chronic debilitating back pain a d now the IC I can really relate to people just not getting how much pain you are in. I describe the IC to them "it's like someone heated up an ice pick in a fire and shoved it up my urethra and its stabbing into my bladder.. that's gets a look !
Acidic foods make my IC much worse. D Mannose also makes it worse too.
Dont drink milk. Helped me. Stop for a week and see how you feel
Hola hermosa ❤ fellow parcerita over here 🇨🇴 I’ve been struggling and was recently diagnosed with IC. I’m just grateful you had the courage to put up this video. It’s been my worst struggle. My biggest 2 triggers are alcohol & intercourse. Luckily I’ve been able to reintroduce coffee lately but I MUST stay hydrated or I have flare ups which for me include the burning sensation and lately the lower abdominal pain. I end up drowning myself in probiotics which help but of course I end up taking more and more as my symptoms get worse. Anyway, I’d love to chat with you and just get more insights. The worst is also just feeling alone in this. Thank you for making me feel seen!! ❤️
🇨🇴 Hola Ivanna, things that help me when I’m having a flare up are 1. Aloe Vera capsules 2. Marshmallow root 3. Bladder Q if it’s really bad. I get all these products on Amazon.
Hola, gracias por compartir tu historia. Que marca d pastilla de aloe y cual otro te ayudò?
I know this video is old but it was so informative and you really helped settle my nerves. I believe this is what I am going through and after multiple doctor visits I was losing hope and feeling defeated but this has given me a lot to look into and hopefully help with my symptoms🙏🏻
Glad it was helpful!
Did you cure? Does it pain?
@@shikhasoni5518 no I am actually in a really bad flare, still trying to find what works for me.
This is the most informative video for IC. Thank you
My pleasure 💖
Thank you for sharing your story. So many people do not understand IC. It is real. I was diagnosed about 6 years ago.
Thanks for watching. 💕 Yes it is very real!! I wish more healthcare providers and people understood that.
How??
Your not alone sis ♥️
Sammie Nososa thanks 💖
Thank you for sharing this ❤❤❤
You are so welcome
Me. I'm so grateful for everyone here and for your video. Decades of mis diagnoses, discompassionate health care providers, even during a recent hospitalization.Thank God for an NP I saw at a clinic who listened and referred. Me to Female urology of Nashville. I'm getting somewhere now, albeit slowly. I'm 56.This has been so difficult for me and my marriage, my career, everything. Finally, people who understand.
Thanks for sharing your story.
When I have a flare and my bladder has urgency and pain, I put peppermint essential oil in a little almond, olive or coconut oil on my pelvic area and add heat, either a thermacare heat wrap or a heating pad. It helps to sooth the bladder and knocks the pain down a couple of notches.
Thanks for sharing!! These are some great tips!!
Heat makes mine worse. I use ice
Thank you for sharing this with us. Same thing happened to me for months at first I thought it was a really bad UTI and I. kept on getting them over and over kept on taking antibiotics got to the point where I got really depressed. I kept on having multiple visits to the emergency room being there for hours ... even got myself a CT scan and thats when a doctor told me that I needed to go to my doctors and get referred out to a urology eventually saw the urologist and she was kind enough to explain everything to me over time eventually got down to the root issue and she said you might have IC never heard of this word before in my life sounded scary but thank God for the instillations they have.
Glad you finally got some answers 💖
How do you manage it? Found something works?
Scan suggested cystitis??? And the installation is for months and repeat after every 6 month? They do it with anesthesia??
I love how the marshmallow root teas and tablets help calm my bladder. Prelief has helped too. Valium and cbd oil has helped too.
Yes!!! I take marshmallow root capsules and prelief 💕💕
@@BrigitteNP pls dont take valium
@@morningwithgracie7870 Hello, no I don’t take Valium. 😘
@@BrigitteNP valium vaginally was my only relief. Some of us are desperate and your statement is cruel.
Thank you for sharing this video. I have had IC for about three years and I have been going through trial and error with many different things including diet. But one thing that I believe has been helpful is Aloe Vera Gelcaps. It is recommended on the IC Association website by many people. Also, for me, cold is what works in my perineum when I have a flare.
Thank you for sharing!
Thank you for this video 🙏🏼
You're so welcome!
Thanks for sharing your story , I also have IC and I’m a RN as well.
Healing Through Art my pleasure 💖
Thank you so much for sharing this video. Omg your story is so similar to mine. I have all these symptoms for over 6 years and been given antibiotics ( probably over 40 scripts over this 6 years) with no bacteria but just to be sure Incase. I'm getting tested for IC. I just can't wait to end this nightmare and get an answer. I have to start the diet. I also am fighting endometriosis as well possibly at the same time. Severe cramps, heavy bleeding lasting for weeks. I notice sitting in super cold water helps those burning symptoms and given me lots of relief
Thanks for watching. Wow, that's so many antibiotics!! I hope you find relief from your pain 💕
@@BrigitteNP Thank you 💓🤗
@@alienabductionawareness2079 how are u doing now ?
Hi- what caused your constant bleeding? The endo? I’ve been bleeding for two weeks straight and it just so happens to be during this “flare” or uti that I’m dealing with. Also looking into if I have endo or not
I’m so glad I found your video. I have multiple sclerosis and I’m used to having urgency during relapses or when I’m particularly fatigued, but recently I’ve been feeling chronic, burning uti pain. Urinalysis’ kept coming back clear until the past 3 that have been positive for blood. They sent me for a CT because they thought I had a kidney stone because of how severe the pain was, but although stones were present they were not obstructing or moving. My NP is extremely sharp and she mentioned interstitial cystitis. I live in a rural area and I’m having to travel to another state about three hours away to see a urogyn. I’m praying that he can help with some type of treatment.
Praying that you feel better ❤️🩹❤️🩹
Thank you for the information 😊👍
My pleasure 😊
Thank you for this video. I am a FNP and I suffer from this as well. I suffered for many years thinking it was chronic UTIs. Many times my urine would be clean when they tested it. But they would always give antibiotics just in case. I finally started to read about IC. I now believe this is what I have. I will try all your suggestions. Maybe rid myself of the constant flare ups. Thank you once again
Shakira Barr thanks for watching!
Best of luck with your journey!! I’m telling you Prelief is a life saver!!
Same here... best of luck hun 🤍🤍🤍🙏🏼🙏🏼🙏🏼
@@BrigitteNP what does this have to do with the lC? I thought that was for reflux. help! I am new to this. So much pain:(
They almost diagnosed me with interstitial cystitis but it turned out to be a reaction from a long course of antibiotics. The antibiotics didn’t just wipe out the bacteria that caused the initial UTI, they also wiped out the good bacteria in the digestive system that digest plant oxalates. Without that particular bacteria, oxalate crystals will form and get deposited in various tissues and cause urinary pain. It took about four months for my gut bacteria to reset. I’m posting this just in case the same situation is happening to anyone else. Just FYI, some people are sensitive to oxalates even without having taken antibiotics
Thanks for sharing.
Hi, may I know what you did to cure? I also feel IC symptom after 2 weeks of taking antibiotics. My doctor gave me ural, it helps but not totally cure because i still feel pain in my viginal area.
Bro i had long course of antibiotics and this happened im 4 months in this still nothing has happened
And i had oxalate crystals in pee
@@hazerterpes2393 is it IC??
Thank you for this information
My pleasure
Great video. Thankyou.
Glad you enjoyed it!
everything that happened to you at the drs, happened to me. it took 3 months to get diagnosed with I C . im learning each week how to manage. im 34, with two kids and my life has all of a sudden changed at the drop of a hat.
Sorry to hear this.
I'm on your boat right now. 2 month and I have a OBGYN appointment on June 22. Hopefully I get answers. My urine sample was negative but the white cells are there.
@@divinelotus19 was it IC?
Does it pain??
@@divinelotus19 was it IC ???
Bladder installations, Prelief before wine and alcohol and lemonade, and low acid orange juice does the the job for me.
Glad something works 💕
Avoiding cofee sodas tomatoes..helps a bit..apple cider vinegar helps a bit.
Great video I'm still unsure if I have prostatitis or IC I'm going to a different urologist this week hopefully I can get some answers. I found that magnesium, saw palmetto and Turmeric really help as an fyi
I hope you get some answers and that your issues are resolved 💖
@@BrigitteNP thanks, I appreciate it. The video was really informative too
I was just diagnosed with IC last month. And this video is by far the most helpful. I am also a nurse and it’s really hard because the flare ups hurt so bad and I have to be on my feet for hours, and when I have to go pee, I have to do it right away! Or else I’d pee my pants. So embarrassing. Thank you for the info!!
Hi Sheena, thanks for watching. My symptoms were much worse when I first got diagnosed and I have gotten a little better since then. I hope that your symptoms also improve. Do your best to learn your body and avoid triggers. If you're able to, try Prelief. It was a game changer for me and doctor's never thought to bring it up. Best of luck to you.
Use of this Information
The information included at this site is for educational purposes only and is not intended to be a substitute for medical treatment by a health care professional. Or specific/personal medical advice from me to you. Watching the videos or getting answers to comments/question, does not establish a nurse practitioner-patient relationship.
Because of unique individual needs, the reader should consult his or her personal physician to determine the appropriateness of the information for the reader's situation.
CT scan suggests cystitis??
I really feel you ,I’m a nurse work 12hr shift and I have to run otherwise I will be in so much pain after ,why it help me is avoid all acid and do some meditation 🧘♀️ along with sleeping on my left side where I feel the pain
I hope you get better,sending prayers for your amén 🙏
My IC crippling it took 2 years too get diagnosed I wish people knew more about it.🤦🏽♀️
Lily Conklin I’m so sorry to hear dear. I wish more people knew about it too. Especially healthcare providers. Sorry that it took so long to get diagnosed. It is my mission to educate more people on this condition.
Is it diagnosed by cystoscopy?
I’m in a major flare right now !
مع الله اجمل yes
Me too! Just keep spreading awareness!
You are so strong and beautiful thank you so much for sharing
Thank you! My pleasure! Thanks for watching!!
Thank you for this video. I am due to see a urologist soon after 10 years of problems and a lot of symptoms of IC. I saw a Urologist for awhile years ago who laughed at me and told me I needed to see a Gynecologist, that he wasn’t the right specialist for me. I am suffering a lot but I really do hope that I don’t have this disease for obvious reasons. I am very uncomfortable and stressed.
I’m sorry that happened to you. I hope this urologist is able to help you. 💖
Hola Beautiful, so glad that I found this informative video of the exact Interstitial Cystitis that I have been dealing with for a while now. It took several trips to the ER, and finally to the Urologist. Which I am still working with to get some answers on my condition. It makes me feel so alone sometimes dealing with this chronic pain, along with all the different medications that sometimes don't help at all. However, you have given me some hope, and I know that there are other's dealing with this same problem. I pray for everyone, for God's healing power to touch each and every one and make us all well in, Jesus name. Amen.
Thank you so much for the information, and please keep us updated on anything new that could help us all in this fight against IC AKA Painful Bladder Syndrome. You're the Best! God bless you.
Thanks Jeni, all the best!!
I was diagnosed with this condition in 1993. Some other things you can do especially if you have fibromyalgia is check for trigger points, I bought a book on myofascial trigger points and discovered that they can refer pain to all the areas you mentioned here. It has eliminated the pain part of this condition for me. A lot of people that have I.C. also have Fibromyalgia. I just have the frequency to deal with. It worked for me at least, just thought I would pass it on.
option387 thanks!
option387 what was the name of the book?
@@BrigitteNP Fibromyalgia & Chronic Myofascial Pain - A Survival Manual. Second Edition By Devin Starlanyl and Mary Copeland.
I have fibromyalgia and have dealt with pain for sometime. I know believe that I have either IC or vulvodynia? That’s what I get when I google my symptoms. This has been more difficult to manage since it has interfere with my intimacy. I need answers and to feel better. I’m starting to feel depressed.
You were not in pain?? Only frequency? How did you cure? And scan suggested cystitis??
Thank you so much,
It took me over a year to get diagnosed with IC. That was after a laparoscopy, colonoscopy, lithotripsy (I did actually have a kidney stone), and countless doctors' appointments where they basically threw up their hands and said I don't know, try this other specialist. For some reason even though I was having pelvic pain, no one sent me to a urologist, the only reason I went to see a urologist was because of the kidney stone. She, however, was amazing! After listening to my story, she said I think I know what you have but I want to put you on a particular diet (no caffeinated, acidic, or spicy foods) and see how you do. If it gets better I think you have interstitial cystitis. Now I'm in nursing school so we'll see how it goes with little to no caffeine.
gek421 so sad that this happened to you. Good luck in nursing school!
What are those acidic food list ?
Thank you for this! I was diagnosed with IC in March and sometimes I feel like a prisoner in my body.
Sorry to hear this
Does it pain??
How many times do you urinate??? Please please reply
Thank you so much I appreciate you explaining about interstitial cystitis,I just got diagnosed with it,I'll been having so many treatments non work on me,now just waiting on a appointment for the interstim implant surgery🤔
I wish you all the best and I hope that works for you ❤️🩹
Did it work??? And how intersim implant would cure your pain??? And you pee more then 30times?? And gets up in night to urinate??
Thank you thank you 💯🙏🤲 lots of tears. I have Radiation Cystitis, lots of the same symptoms amongst others which seem to be getting worse as I age.
The Dr has recommended Elmiron, but, I, like you am freaked out about the eye concerns and the expense. Also which Prolief do you take, or does it matter?
Mine is a long and complicated story, but only recently learned of other foods besides coffee, tea and citrus that can cause flair ups. I miss my coffee too and wonder what the low acid coffee that you take is called.
My body is so incredibly tired and sad (traumatized) after going through one of the more aggressive flair ups, so grateful to hear your story and honesty and everyone who shared on here 💫
Hi! Thank you for sharing your story. I am so sorry you are having a flare up. This is the link to Prelief: amzn.to/4c5cPCc
Ask your PCP or urologist before you start taking supplement but this has also helped me tremendously as well: amzn.to/3RqKldN
I hope you find some relief!
@@BrigitteNP thank you much for your reply. I also suffer with chronic UTIs and have had bladder stones, so all this good information and supplements are on my list now for discussion with my Drs. What blessing I found you on here 🤲🙏
Thank you for this video! I was diagnosed 3 years ago and its been awful, I haven't found anything to ease my flare ups yet but I am going to try some of the supplements you and the other viewers mentioned. Anyone else have pain with intercourse as well ? It really sucks.
Yes, I do too. Drink lots of water and sit on a heating pad, make sure to pull it up over your girly part. It relieves quick when your having a terrible flare up. So far this had worked for me and I dont do anything else. Pay attention to your diet and definitely try not to stress. I hope this helps! We're all in this together ❤
Yes it flares me up too. I have good days and bad days.
ruined my sex life. you aren’t the only one
Yes
I actually think thats what started mine, every time I had sex I had to go and get antibiotics, the doctor decided I was allergic to my husbands sperm? so he gave me some antibiotics to take after sex, he said empty your bladder straight after then take one of these.
There’s the brief times when I felt it was in remission then bam 💥 it always creeps back in and docs are still just as duh as they were back in 2000 when I was first diagnosed
Yup. Same thing happens here. Thanks for watching.
I have been managing my IC for over 11 years. I have actually found what diet works for me. For me, chile actually helps calm my bladder down when I am in a flair. I found the capsaicin (anti-inflammatory property) in chile works amazing for me. It's not for everyone but I have found that chile is often listed in the "do no eat" list for the IC diet. I had to find out the opposite on my own. I can also eat fresh tomatoes but no tomato sauces because of all the citric acid, vinegar, black pepper it usually contains.
Thanks for sharing your story. I’m glad you’ve found something that helps 💖
What is Chile?
Desert Harvest Aloe helps for me. Menopause with no bio-identical hormones during covid was when my first IC episode happened. On going resistence to giving me adequate estrogen is keeping it going.
I live in the US and have been getting bladder instills of heparin, gentamicin, sodium bicarbonate, and lidocaine. It takes about 4-6 treatments per flare up but it really helps a lot. Costs me about $250 in medical bills though every flare up
Thanks and I am glad this is helping.
I do thos instills every 3 days at home, flare or not, and I've seen a huge improvement.
See my comments
This is so true I’m glad my urologist helped me but it was a rough road ….
@@denise-ov6on can u pks provide the name of the meds for instils
I was just recently diagnosed with this after having a UTI and the symptoms persisting after antibiotics. I honestly feel like stress and anxiety brought this on. I feel so guilty doing this to myself. My anxiety and depression had been horrible for months. I feel like im never going to get my life back.
Hi Amiya, do not blame yourself for this. IC is already hard enough to deal with. Be kind to yourself, love yourself and most times IC comes in waves. You have good days and bad days. Embrace the good days.
amiya92 going through the same
Going through the same ..but do not blame on yourself. How are you doing lately? getting any better?
amiya92 it’s been years and now I have SIBO. I found out I have oxalate poisoning.
@@imstillhere3753 can you explain to me what that is please?
I was just diagnosed with IC... it took me 6 mos and 6 docs to finally figure out what was going on with me... I am not certain, but I think stress was a huge factor in it all... this has been one hell of a rollercoaster ride and I can’t wait to get off... it’s nice to be able to relate with other women who are going through this...I will be trying therapy to help relax my pelvic floor muscles, eliminating triggering foods and Uribel ... I’m really praying this alleviates most, if not all of my symptoms ...
I’ll keep you in my prayers 💖
@@BrigitteNP Thank you so much ... it would mean the world 💐❤️
Hey how is it going now
Did you cure???
Thanks for the very valuable I formation !!! Please tell the name of the low acid coffee ? Also what kind of herbal tea would be best ?
Hi! The ONLY tea I can drink that doesn't flare me badly is chamomile. Everything else is out of the question. I use green tea pills by Zhou and those don't flare my bladder and Mommee coffee on amazon for low acid. BUT I ONLY drink that coffee occasionally bc if I do it too many days in a row IT WILL flare up my bladder. EVERYONE'S different, just keep that in mind.
I am 17 years old and about 4 months ago I was diagnosed with ic. I have been showing symptoms since birth and have been miss diagnosed over and over. I went to a family practitioner the obgyn the urologist and emergency rooms, I had so much testing done but found nothing my urologist only came to the diagnosis of ic after a cystoscope. but it came to the point where I couldn’t go to school anymore I could drive I couldn’t sleep at night. My urologist says I have a rare case and one of the most extreme cases he has ever seen especially for my age. It’s because my age my treatment is at a stand still but I’m at a point I can somewhat manage it . It makes me feel so crappy about it all that nobody around me knows what I’m going through but at the same time I wouldn’t want them to.
Thank you for sharing your story and so sorry you went through all of this.
@@BrigitteNP you must try Celery Juice or shake early in the morning with an empty stomach. Avoid foods that can cause IC trigger also like processed foods. Dont loose hope man. you can do it
I started having symptoms at 15. I am now 34 and gave up on treatment until now. After 20 years of pain I can tell you what may help. Cut out sugar, processed foods, caffeine , soy, dairy, and vegean if possible or just have fish. Also see a women's pelvic floor therapist. My insurance won't pay for it but it is worth the money. Look at website IC network. You are not alone.
Did u heal yours bro?
Did you cure??? How are you... frequent urination decrease hui??
Hello an thank you for your testimony. Can you please tell us more about your diagnosis? I am going to have a cistoscopy soon, but don't know if that's all
Yes a diagnosis can be made based on cystoscopy and symptoms.
I just ordered prelief off of Walmart online. Should get here in 2 days
Hopefully it works for you.
I am a man with this. It started within 20 minutes one day just into my 50th year. I underwent the same scrutiny as you did.. bladder infection checks, and contra-indicated STD tests. The pain is intense.. more than 6 years of it now...pain especially lower right and raw-feeling urethra at times, nocturia.....otherwise feel young, vibrant and healthy. It is a crazy thing to live with. Spicy foods, caffeine, citrus affect me too and cause more intensity (flareups) than my general day to day pain. (Diagnosis took 5 years for me. Urologists looked at me like I was crazy until I met one who was particularly astute).
Thank you for sharing your story. Do you ever have periods of remission or is the pain constant? Have you tried any supplements for your symptoms? Best of luck to you and thanks for watching.
I'm in a similar situation but 18 and I have the same symptoms and I went through a really short remission sorta but i have to take ibuprofen alot nowadays
I have that horrible urethra pain as well I think it's worse than the bladder pain
@@sharonbender880 Same here. Horrible urethra pain. Feels like shards of glass are constantly cutting me 😩
@@Spiderific I have that to. Prescription Lidocaine has helped. I have to Cath myself so I put the gel on there. Drinking lot's of water or sitting in the bathtub with a tablespoon of baking soda or corn starch helps. I am in pain mgmt as well. I have had this for over 10 years. Sending a 🤗
Heyy, I appreciate you and seeing this. You’re video has helped me find some relief. I have been going back and forth with my Urologist and gynecologist About my symptoms and everything you have just said is what I went through. I am going to tell my urologist about this because this is definitely how I feel. And are you able to have Intercourse with your partner ? I am so uncomfortable.
Hi Harriet, my pleasure. At first intercourse would flare me up. I’ve taken a lot of supplements such as aloe Vera, marshmallow root and hyaluronic acid, I think something has worked bc usually intercourse will not flare me up now. Best of luck to you.
@@BrigitteNP thank you so much ❤️
Do you have a updated video? How are you feeling these days?? I believe this is what’s wrong with me. I’ve been to primary dr, gastro dr, and gyno dr and NOTHING. I will be goin to the urologist soon. Thank you for this video. I have all these symptoms. I’m so miserable
I have good days and bad days but much better than when I was first diagnosed. I hope you get answers soon and that you feel better.
I am on Amitriptyline and that has helped me so much.
Really glad that has helped you 💖
Getting diagnosed with IC is hard as an adult. It’s even harder as a child.
I had symptoms as young as 10 years old.. I was diagnosed at 18. The doctors now agree that I had IC as a child. I used to pee more than 50X a day.. sometimes 50x a night ://
Oh wow. Thank you so much for sharing.
Me too, I pee 30more times in a span of 24 hours and it disrupts my sleep, I’m having insomnia now and anxiety 😥
Have you found something works?
Did you have bladder pain???
How are you?? Frequent urination control huii???
I only feel like i have pee stuck somewhere in my urethra. I don’t have pain it’s just REALLY uncomfortable. Then sometimes i have pain with sex. I have lupus (SLE) and fibromyalgia. I think there is a lot more to this condition that not many know about. I went to a urologist and of course it was negative. So I know this is real. I’m sorry to anyone who suffers from this. I wish there was more research about this condition. All love to you💖
Love to you too girly!!
Maybe check with a “functional medicine” doctor? Do some searches on UA-cam and see if that’s something that might provide insight into what’s going on
this could be urethral syndrome- google it.
Hey Tori, i feel exactly the same this is my symptom and its extremely annoying and uncomfort all the time. I want to ask how are you now and did anything change with this symptom?
Thank you so much for sharing your story, I am wondering if I did something to cause this I thought maybe drinking to many sodas or caffeine but all I drink now is water and does not really help at all. Do have the burning a lot seems milk helps some. I have had Uric acid kidney stones in the past and take allopurinol I guess that helps with acidic urin some.
I just started seeing a wonderful holistic gynecologist that was suspicious that I most likely have IC. I have been in and out of the doctors office for a month and a half on 5 different antibiotics, none of which helped what they said was a bacterial infection then a uti. My new doctor read the labs taken by the other and determined I never needed to be on antibiotics as my levels of bacteria were at 22,000, they only treat pregnant women when it gets to 99,000. I’m married and it adds a huge amount of pressure to just feel better. It really sucks. Men don’t understand why you don’t improve after seeing a doctor. So what a blessing for my new doctor to spend the time to figure out my issue. Seriously thank God for her. I’m currently doing castor oil packs which feel so lovely on my whole lower abdomen. I’ll be revising my diet as I’m learning more about what this is. My body is telling me to change, I’m going to listen. Perhaps saving me from something far more serious.
I am happy to hear that you found helpful gynecologist 💖
Hello , what are castor oil packs?
I have been living with IC for almost 10 years and it has been an awful experience. After a lot of research I was able to find the right medication. Now I only have slight flairs that last 2 days max. The medication which helped me are antidepressants and aloe vera which I take in pill form. I know IC is different for each person but I think it is important to share what works for you.
My hart goes out to each individual dealing with this syndrome. I hope you can find comfort knowing it can get better and that you are not alone
How many times do you urinate and have you have to get up in night for urination even you are hell slept?? ???? Can you say this is for lifetime? Medicines will work
Do you get pee all the time??
@@shikhasoni5518 Not since I started using anti-depressants. Now I only get a flare sometime after my period or when I am very stressed. Some studies has linked mental health issues with IC and in my case it seems to be linked.
Also try and alter your diet and stay away from wheat and acidic food - also helped a lot.
@@mishahoug so you urinate normally like 8 to 10 times a day??
@@shikhasoni5518 most of the time.
One lady that was diagnosed with IC actually had Bladder Cancer. Now that I have IC I feel scared that I am misdiagnosed after reading an article saying it starts in childhood and I am 40. I basically feel like I have UTI all the time but urine analysis clear. It's nonstop.
Hello,
You could always request a cystoscopy by your urologist and if he sees anything during cystoscopy he can biopsy it. My urologist advised against it because he said it would actually flare up my IC. Bladder cancer at my age is unlikely. Bladder cancer tends to run more in males, 50's and older, smokers, family history, and environmental factors. But do what you need to do for peace of mind. 💕 Remember to advocate for yourself, it's your body.
@@BrigitteNP Had Cystoscopy last week, yes, it was really uncomfortable. I can still feel the burning sensation ( 10 days after)..However, before the procedure, I felt burning sensation here and there as well. So I am not sure if cystoscopy would flare up. But for peace of mind, better safe than sorry.
Jade Lu yes cystoscopy does flare up symptoms but they’ll get better again.
@@BrigitteNP I have overactive bladder and I was back to normal with OAB med. I had cystoscope for some unnecessary reason and it irritated my bladder again. And 2 days later I ate fennel seeds and cardamom for my acid reflux issue. Afterwards, I started have bladder cramps/pain. I regret so much having that unnecessary cystoscope and taking fennel seeds and cardamom. How can I live with OAB and IC???!!!
Thanks so much for this video, I think this is what I have based on what the urologist said, etc. Your video was 4 years ago. Have you heard any updates on the trials going on in Canada?
Thanks so much!
Hi, no updates so far 💖🙏🏻
Thank you so so much❤😢. I appreciate your video. It has been very informative ❤. I wish with all my being a cure will be found. This disease is devastating. Not to say annoying.
Just found out I have Intersistrial Cystitis 5 days ago. Been in pain 3 years since I had 2 cancer surgeries, completel total hysterectomy . Saw 2 Gyno-oncologist who said they didn't know why I had pain that I shouldn't be . Finally saw a 3rd Gyno-oncologist 5 days ago diagnosing Intersistrial Cystitis saying there is no cure for it.
I'm feeling overwhelmed. Wanting to learn how to deal with this. I usually have a high pain tolerance but not with this.
I prefer holistic treatment but this pain has me willing to try meds..
Thank you for this information and how to perhaps find some relief.
Hi Carla, There is hope. Avoid trigger foods. Always ask your healthcare provider but things that have worked for me include taking Aloe Vera capsules, marshmallow root daily and Prelief tablets with food. There are medications that you can take for the pain and if the pain is unbearable then you can look into these medications. I wish you all the best. 💖💖🫶🏼🫶🏼
When you started to talk about not blaming our selves and thinking about the what if. All I could do was cry because I do blame myself. I feel so miserable going trough what is happening to me. I’ve also gotten negative Uris test culture test. Was give antibiotics to deal with the pain. I’m very much 100% sure I have this problem. Some days are good other days it’s a flare up and I’m in the restroom about 11 times. My doctor made me get blood drawn again after complaining about it because the first time every thing showed fine my kids eh were good. This time I went the lady couldn’t take my blood because I was dehydrated. I was poked and I didn’t end up getting blood drawn. i didn’t know I was that dehydrated. I had felt better about not peein myself a lot but at the cost of being dehydrated. I wish there was a cure. So much stuff has advance in medical technology. Makes me sad to know I won’t be able to live a quality life or eventually not be able to work my job because of this problem.
Hello, be kind to yourself and never give up hope. Talk to your urologist about options.
Don't blame yourself. It's a difficult enough condition without self-blame. Blaming yourself just causes anxiety. Nobody knows that more than me! Be kind to yourself. You are not alone.
I’m currently having instillations in my bladder for the IC pain, hopefully they work!
Did the instillations help?
How are you??? Have you recovered???
@@shikhasoni5518 they didn’t help and made things worse for me. I was later diagnosed with 5 more conditions separate to bladder issues. Still have all the problems associated with IC
@@maisygordon8809 do you pee 30 times a day and even in dense sleep you have to get up to pee? Please reply
@@maisygordon8809 they hurt ?? Are you conscious during installation??
Thank you so much ,I had been dealing with it since 2020 ,heat is something that not help my flares up,just sleeping in my fetal position lol ,and low the stres absolutely yes I had been doing meditation 🧘♀️ help me a lot ❤.Thank you
Thanks for sharing 🫶🏼
I have been living with IC since the early 90’s. Imagine back then when docs really didn’t know and told me “it’s all in your head.” I am having a major severe flare up right now so I went searching. Thanks for your video. I just bought some Prelief. I have never heard of it before. Yep. Every once in a while I go to my doc to make sure I don’t have an infection. I wouldn’t be able to tell.
How are you doing now?
Thanks for sharing. Sorry to hear you were dismissed for so many years. I have good days and bad days but Prelief is my saving grace. I hope it helps you out as well.
I usually never comment on videos but...I was diagnosed with IC a few months back after dealing with intesne bladder and urethra pain. I'm on many many supplements, and I was actually was doing the bladder installation treatment that you talked about (I live in the US), unfortunately i noticed little improvement after doing them for 6 weeks (one installation per week). I was prescribed a low dose opiate because my pain is so severe that OTC pain relivers do nothing. My pain is flared so easily by foods, even tiny tiny amounts. I've had to completely cut out everything on the trigger list including soy, and i'm so miserable beacuse I have barley any food options left to eat. I have a procedure next month to determine weather or not I need surgery. I'll do anything at this point to stop the pain. I had to drop out of college because this particular condition completely disabled me (I have numerous other chronic health conditions but this one really ruined my quality of life). I'm really hoping that I will be able to improve over time so i can add foods back into my diet. Even with the strict diet and everything I'm doing for symptom managment, I still face my IC pain every single day. It's exhausting. I'm only 20 and I have no idea why this happened while I am so young. I have also been diagnosed with an OAB however so idk. Either way it's nice to know I'm not alone :( Thank you for this video.
Hi Elena, I’m so sorry that you’re going through this. I pray that your symptoms become more manageable.
Hi Elena,did you have surgery? How have been doing so far? My IC is just like yours. Nothing helps.
And I've had 3 fulgurations each of which made my IC worse. At the very beginning,i only had itchy urethra which didn't feel ant better with antibiotics and i had 3 cyctoscopiesin a row.(fulgurations of leukoplakia and biopsies)
@@ay-tl8fu I haven’t had surgery. I’ve been thinking about asking if I’m a candidate. I was looking into that nerve stimulation device that’s implanted into the lower back, because I think it could reduce the pain but I’ll have to see if my doctors agree with that corse of action :/
@@ay-tl8fu I’m really sorry you’re suffering so much. I really hope they find something to help relieve some symptoms and pain
Hello. I got diagnosed with interstitial cystitis today, I am 13 years old and I have a really bad case of it. I got a hydrodistention done today and I hope that helps :)
I'm sorry!! I hope the hydrodistention works.
What does that mean u had done please?
I believe I got this here got all this going on urologist booked until April so ima do what I do best and take care of me rn❤
I haven't been diagnosed yet, but believe I have IC and next week have to do am MRI of the Pelvis. I have read a lot about Pelvis Floor Dysfunction Therapy for tight muscles. It is supposed to be the first and best treatment to alleviate most of the symptoms for patients with IC. IC patients have their Pelvis mus CV li es very tight and relaxing them is supposed to be miraculous.
Thanks for watching and good luck.
The nurse practitioner at my urologist office suspects I have IC and suggested I try aloe Vera pills. She has had IC for over 20 years which is why she suspected this disease she recognized the symptoms. I go back to see my urologist in 6 weeks. I’ve been dealing with this for over 2 years and I’ve been seen by several different doctors. None of them can figure out what is causing this horrible debilitating pain. Has anyone else tried Aloe Vera pills?
@@lyza1390 have you tried aloe vera?did it help ?
@@lyza1390 Regular aloe vera is useless and the latex form can be toxic. I found organic freeze dried aloe vera [Desert Harvest] helps but it' s expensive.
I can’t count how many times I have been to the doctor thinking I have a UTI.....I would leave in tears every time because I would. Leave with no answers and i think that sometimes the doctors wouldn’t believe me and thought I just wanted pain meds.....It is unbelievably frustrating...so after doing research on my own I cut off all soda and caffeine and started drinking a lot of water and some cranberry juice and it has helped a lot....some ppl say that cran juice isn’t good but it seems to work for me I’m drinking water and cranberry juice only......and this problem was also affecting my job because I am a cashier at a very busy hardware store so I would have to get someone to take my place every time I had to go to the bathroom which was 3 or 4 times n hour.....my coworkers thought that I was doing drugs because I was taking so many bathroom breaks.ppl that don’t have this don’t understand how many different ways this can affect your life....
Sorry you're going through this.
me also feeling pain of my abdominal..this was long years..maybe i have to stop take coffei ne...
I suffering this desese..my life is hell
Sorry to hear my friend
Jayantha das. How I will fell I'm suffer it pls tell me
Me to...i m from assam...can u suggest how u r treating?
Jayanta Das mine too
Same and I don’t want to take Elmiron as it can case vision damage or blindness so I’ve done aloe Vera supplements
Desert Harvest helps rebuild the bladder lining...only as long as you are taking it though. And yes Elmiron made my hair very thin
Also, specifically targeted videos with yoga has been wonderful
Hi have you heard of D-mannose for interstitial cystitis? I have been using it for a couple of months now and find it helps to reduce symptoms but it's early days and I haven't had an official diagnosis yet, only know I don't have a UTI
Yes, I take D mannose to help prevent UTIs.
I’m wondering if I developed pelvic floor dysfunction because of this or if pelvic floor dysfunction triggered this. Hopefully my PT and new urologist can help out.
Best of luck.
Thank you for this video. I had reoccurring UTI symptoms. My UTI was negative. No bacteria. I ate a Mexican food. It had a lot of MSG. Also, I drank coffee in the morning for 3 days straight. Pretty much a perfect storm for my symptoms to flare. I think this is what I have. My cousin has it.
I went to urgent care because I felt needle pains, uti symptoms, cloudy urine, burning 🔥. Yet NO nitrates (bacteria) but I did have white blood cells. I think the urgent care doctor knew but she didn't say. She touched my bladder and pushed that's when it hurt.
Hope you feel better soon. As long as your healthcare provider is ok with it, Prelief has helped me a lot. I buy it on Amazon.
Thanks!!
The way you described UTI's are exactly the way I feel. And even though bacteria/cultures are growing, they are saying that I have to have a cystoscopy with hydro-distention. My understanding is that you aren't supposed to do that with an active infection, am I wrong?
Besides, I'm not a candidate for the hydrodistention due to a connective tissue disorder, and already having ruptured an organ. Im not a candidate for biological children because of my rupture history and genetic disorders.
Thankfully Elmiron has always been covered for me!
I wish you healing ❤️🩹
I had this since I was 8 years old. Now I'm 42 and its getting worse. My kidneys are always in pain and its getting smaller. I did all the lab tests and it all turned out clear. I drink too much water everyday cause if I don't I felt so much pain peeing. I'm depressed.
Sorry to hear this dear. Have you tried Prelief?
@@BrigitteNP i think prelief is not available in philippines
Have you found something works? Dealing with it >30 years, you should find something works.
Have you try elimination diet?
It's so hard when doctors don't believe us do you have any advice for how to talk to doctors about it so they will listen. I feel urgency and sore muscles around hips and tailbone have no idea why all these symptoms 🌷🌷
Hi dear! It’s a great question and not one with an easy answer. I cannot provide medical advice virtually but if you feel your provider is not listening you could always ask to be referred to a specialist, depending on your symptoms you might have to see either a urologist or gynecologist. Before I go see a provider I always like to check out their reviews online to see what other people are saying about them. Hope this helps. 💖
Ask urologist for an hydrodistention test. You are put to sleep and they use a Cather to feel your bladder up with water so that they can examine it they take pictures of your bladder that's how my friend found out that they had interstitial cystitis hope this helps
I know someone who suffered with this for 13 years. The pain was so bad, she scraped the money together to go to Harley street. A specialist there told her `I.C` doesn`t exist, it`s actually an embedded UTI. She`s now on a year long course of medication for the UTI.
Thanks for your comment . However I don’t believe in this. If I had an “embedded bacteria” it would show up on urine cultures, the pain would be constant (not ebb and flow) I would have other signs of infection (fever, fast heart rate etc), to each their own though. I wish her the best of luck.
@@BrigitteNP hello Ive done a lot of research concerning this spent nearly 3 years doing research every day as I am suffering with this . The embedded uti does really exist and sometimes it does not show on a urine culture however it can show large amounts of epithelial cells . As I noticed my symptoms started right after I got diagnosed with an infection .
@@jeannedarc2903 the reason the pain can occur after an infection is Bc the infection damages the lining of the bladder wall and going forward anytime irritating foods touch the bladder wall it causes these symptoms of pain.
Was it IC?? Or UTI? And did you recover??
my doctor today recommended D-Mannose to prevent getting UTIs if you get them constantly
Hello Thanks for writing. Yes D-Mannose works great to prevent UTIs. Interstitial cystitis is not a UTI. Symptoms include a painful bladder with no known cause.
@@BrigitteNP does IC give you reoccurring UTI's as a side effect though? I had a UTI and it was cleared for months but i maintained symptoms/ got more severe and with testing they concluded its IC
Every time I research more into this (I was diagnosed about three years ago) it just makes me want to cry. I feel so hopeless. Nothing helps. Doctors just keep sending me home with more antibiotics. I just wish things could go back to normal.
I'm sorry you're going through this.
Nursing with Professor B I appreciate your kind words and video!
How long have you had this? I have it too and feel the same way - feel so hopeless
You can take a spoon of turmer juice with a spoon of honey and a spoon of amla every morning with empty stomach. I thik it will be cure for you mam....
Feel for you so much @miranda. I would rather have any other issue than this. It’s maddening. The worst thing is not knowing what to do to get better
I literally diagnosed myself at the doctors office, after doing research online) luckily the doc believed me & sent me to the specialist & they prescribed me physical therapy. I never went because we went on lock down (covid) My trigger is sugar. So I drink lots of water, only water actually. Sitting on a heating pad helps as well. I have 3 healthy babies naturally. Im guessing either my depo shot caused it or (not to be gross) rough intercourse. Just a theory of mine.
Hello, good luck to you. Try to avoid caffeinated beverages like energy drinks too.
Can you share anything about your natural delivery with IC? I’m in my first pregnancy and had IC for 15 years now.. I’ve had flares but have questions around the actual delivery
What type of specialist did you go to?
I think sex caused mine, I just posted above about that
I was diagnosed in 1999 I've had over 40 hydrodestentions now with blood clot evacuation I had the interstem placed and replaced 4 times now I live on pain meds and anxiety meds after years of every test and treatment out there praying for a cure and more medical intervention
I pray you find healing someday 🙏🏻💖
It’s interesting that when this video was made, Bladder instillations weren’t approved in the US.. I was diagnosed 7 or 8 months ago and have had 8 or so instillations . I think certain medications that affect Immunity create a higher chance of getting IC. For example I had neutropenia around the time my symptoms of IC started up. Started with the Same problem with going into Urgent Care and getting antibiotics.. I just happened to also have Keto Flu so bad that I was in the ER and they kept me fore 4 days trying to figure out the neutropenia. They also treated me for bladder spasms and this was the first time I was treated for something other than UTI. Turned out my psych medication was negatively effecting my white blood cells AND my electrolyte levels (which intensified keto flu); but who knows what else.. As soon as they took me off the mood stabilizer, my blood levels began to even out. But I had been on this type of medication for over 4 years.. and a lot of medications have the side effect of lowering immunity which in my case meant the lowering of certain white blood cells. So I wonder if various long term medication use effects the bladder. Also my urologist told me a lot more younger women get this now than before. Perhaps increase in birth control use or the increase in prescribed psychiatric medication (I had a college inquisition on the increase in psychiatric care and treatment)? This is purely for inquiry, and based on personal experience. I am not a doctor.
Also acupuncture helps me most
Toni A I think there is def something in our environment triggering the increase in IC. This condition was nearly unheard of 20 years ago.
I have suspicions that recent Prozac use caused my IC flareup
Have you recovered??? Did you cure? Frequent urination kam hui??
I was curious if anyone felt extremely bloated - as if your abdomen has been filled with air)-(I don’t have a uterus anymore so it can’t be that). Thank you so much for any input!
Thanks for watching. I haven't really experienced bloating. would think that's more GI (gastrointestinal).
I have felt this I always feel bloated when this happens to me
I have the bloating issue as well
Yes
My tummy is swollen constantly
What do you do when it comes time to go to sleep? My sleep has been suffering for as long as I can remember because of my IC.
Hello, fortunately if I avoid trigger foods my IC is pretty tame. If the pain is too bad I occasionally take ibuprofen and acetaminophen.
@@BrigitteNP cool thanks for the info!! :)
My urologist gave me amitriptyline. I know I wasn't a part of this conversation but I will say that works. Just makes you so groggy the next day
You may try a sleep clinic. Pain management wouldn't even give me an appointment.
@@blessedmommy8403I’ve heard it causes insane weight gain :/
Right now I’m on Seroquel for sleep, and it caused me to gain 20 lbs. It’s really affecting my self-worth
I also have IC. One of my doctors always just wrote it off as UTI’s and because I thought I was getting them so often (and antibiotics aren’t good to use all the time) . I didn’t find out until covid when we had to download an app for test results that none of my uti tests ever came back positive, my doctor was just treating me as I did. I started using at home remedies… come to find out that at home remedies for UTIs are some of the worst things for IC (I.e. cranberry supplements and Apple cider vinegar.). One doctor finally told me that she thought it was IC. I cut out caffeine for a year and I hadn’t had a single flare up. I’m now trying to figure out how to/if I can reintroduce it at all as I have trouble staying up past 7pm without some form…. But now here we’re at 1am having a flare up from having caffeine. Right now, when flare ups happen the only thing that helps is a lot of water and peppermint tea. I swear by the tea even though it does say tea is a trigger.
Hi, thanks for sharing your story. I am so glad you are doing better. Below is a link of what I take instead of drinking caffeine because like you said, it's hard to stay awake without it. They don't make me jittery and I don't feel like my heart is racing. It seems to be a pretty good sustained form of energy. You could also look into low acid coffee on amazon. But unfortunately liquid coffee is a huge trigger of mine so I stick to the pills.
Link:
amzn.to/3zw5w2f
Do you pee at night also?? Everyone has to get up in night many times with IC?
Thanks
I thought I had a uti , had no bacteria in urine , but took antibiotics , didn’t work and then they thought I had yeast infection , took medicine and I’m still having problems till this day , it’s been almost a year , and my parents won’t take me to the doctor . And I think it’s this but idk and I can’t tell if I have a uti or not and it’s sooo stressful , please help ! ☹️
Sorry you'r going through this.