INTERSTITIAL CYSTITIS: MY STORY: VLOG: WHAT IT'S LIKE LIVING WITH INTERSTITIAL CYSTITIS 

Lord help up all cure us from this disease I just want to feel normal again

That’s exactly how it feels like its burning slowly with fire and no-one understands other than people who suffer from it

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!

Thank you for sharing. Glad to hear someone speaking same language , understand from a professional and personal point of view

This is so helpful. Thank you for taking the time to share.

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 sharing your story. So many people do not understand IC. It is real. I was diagnosed about 6 years ago.

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!

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

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!! ❤️

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.

You’re amazing I’m crying Thank you for making this video

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.

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.

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🙏🏻

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.

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!!

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.

Your not alone sis ♥️

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.

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

I love how the marshmallow root teas and tablets help calm my bladder. Prelief has helped too. Valium and cbd oil has helped too.

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.

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

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.

Thanks for sharing your story , I also have IC and I’m a RN as well.

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 this ❤❤❤

My IC crippling it took 2 years too get diagnosed I wish people knew more about it.🤦🏽‍♀️

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

Bless you for putting out this video

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.

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.

Thank you for this! I was diagnosed with IC in March and sometimes I feel like a prisoner in my body.

This is the most informative video for IC. Thank you

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.

Bladder installations, Prelief before wine and alcohol and lemonade, and low acid orange juice does the the job for me.

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

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 ...

Thank you for the information 😊👍

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.

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.

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 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

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.

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.

Great video. Thankyou.

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).

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 ?

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.

Thank you for this video 🙏🏼

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 ://

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.

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🤔

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 💫

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

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💖

Thank you for this information

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 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....

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.

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 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 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

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

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!

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.

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 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.

I suffering this desese..my life is hell

I’m currently having instillations in my bladder for the IC pain, hopefully they work!

I just ordered prelief off of Walmart online. Should get here in 2 days

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.

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 ! ☹️

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 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.

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.

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.

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 🌷🌷

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.

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?

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!

I have IC (22), and have been having issues since I was 7/8 and was just being told I was crazy until last September when someone stopped to listen to me. She was so nurturing and kind. I’m from the UK and it’s even less known here. I’m allergic to NSAIDS and prelief makes me worse so it’s a very miserable time for me during a flare. Every day feels like a chore. So sad to feel this way.

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

You are so strong and beautiful thank you so much for sharing

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.

It took 10 years and two different urologists to finally get diagnosed. So, I have actually been living with this chronic disease for 29 years.

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.

I'm diagnosed with it but the doctors still give me antibiotics every few weeks when I have a flare up. Mine is extremely painful and I get vaginal pain too. Even though I get pain and often don't show a UTI. I still take the antibiotics because they stop the worst of the symptoms and I don't know what else to do.

I am having acupuncture for my IC and it is helping but it is very expensive. I’m in America so not all insurance covers it. Mine doesn’t.

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.

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.

I’ve had IC since i was 4 years old (I’m 21) and I’ve honestly given up all methods to help. Nothing I do helps and I’ve given up. I leave work early more than anybody from peeing blood how bad my IC can get. I sleep in the bathroom with a pillow and blanket if it gets that bad. I also have vesicoureteral reflux on top of it and doctors say that it could be that I’ve had this for so long that my body has developed a method to pee less by just distracting myself/resisting the urge to urinate in which my bladder over expanded and this let more room in there resulting the bladder to be so filled it retracts back in my kidneys which is possibly one of the worst pains I have ever had if it gets that point . I could survive off only water and I still get flare ups. I’ve given up and also my doctors say with how inflamed my bladder gets compared to when I was younger my condition only gets worse as I get older. I’ve been given medications for it and nothing... I have had GAD (generalized anxiety disorder) since I was a kid as well and we’ve narrowed it down that the reason nothing has helped.

I had end stage IC in 2006 after being diagnosed in 2004. I had my bladder removed. They took 1.5 feet of my small intestine to make a new bladder “bag”.

I'm on a facebook page that address's this issue. One lady asked how many people with IC had pain in their hip (right side) and a lot of people responded with yes including myself. Have you heard about any correlation between this IC and hip pain?

Hi, I have recently self diagnosed with ic, I know you mentioned your breast implants triggered your ic, I have an allergy to silicone and figured out my contact lenses have triggered mine. I have also developed an allergy to foam, including memory foam, spandex, and polyester. It's been hell not being able to wear most of my clothes, and now I can only wear glasses. Do you have any advice for me? My doctors don't know what to do with me and make me feel like I'm crazy.

I got diagnosed with this a month after giving birth. I'm 8 months postpartum. I don't have pain when I urinate or burning I have pelvic pain. But mild. I have frequent urges and urination. That's it. I have never had pain or burning in my bladder. I just have the urethral meatus like acting I need to pee even after I pee. I never heard anyone with similar symptoms as mine. With this diagnosis. Anyone have the same ?

I’m currently 16 I’ve been having problems now for 3 years and nothing has got any better they did an ultrasound on my bladder it came back clear and I’ve had a cystoscopy and still nothing been on countless amounts of phone calls with the doctor been on numerous antibiotics they just gave me but nothing will work and a lot of them were making me not be able to swallow food and giving me serious hartburn to the point of being sick. Even just drinking water causes so much pain. I’ve been in constant pain since January every single day it’s getting worse. The doctors have told me that I’m making it up I feel hopeless.

Did you have extreme bladder pressure. Feeling that your bladder was never empty.

I know i have IC but everytime i go to the doctor they do a urine sample, it comes back negative and they go oh huh guess you're not sick and stop there. I don't even wanna go to the doctor anymore because theyre either gonna send me away or order extensive and invasive tests to come to the conclusion i already know. and then spout some line like "have you tried mindfulness" i'm fed up, this doesn't feel fair, i just want to get on with my life, finish my education, get a job, have fun and here i am crying in bed every other day cause it feels like someone is flushing acid through my bladder and no one takes me seriously