What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of is to relive, it’s important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I’m sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they’re not alone.
Below are the answers I’ve received for IC Awareness Month daily topic # 20.
I was seriously ill last autumn from September to November with Cryptosporidium and Gastritis. I was in hospital for a month and had severe stomach and bowel problems and was dangerously underweight. Then, just when I was turning a corner in my recovery mid-November and being able to eat, the bladder symptoms began. One night, out of nowhere, bad pain when I urinated. There was nothing on the ‘dipstick’ at the doctors surgery so they sent me away but the symptoms continued. For a couple of weeks I did nothing but the symptoms got steadily worse. Sure I had a UTI, I insisted they send a sample to the lab and sure enough it found some ‘Ecoli’. They started me on one antibiotic, which did nothing. Then another, and another. Then stronger ones – I remember Cephalexin, and Ciprofloxacin. All the tests by now were negative, negative, negative. I had a full sexual health screening. I became convinced it was some sexually transmitted bug they don’t test for, but which can give UTI symptoms, so I pushed to be tested for these too. By January I was getting desperate. I needed an answer. The STD doctor was very unsympathetic and thought it was all in my head – due to upset over breaking up with my partner! I was referred to a kidney specialist who knew little about IC, and thought I had ‘urethral syndrome’, but referred me on.
The consultant urologist I ended up with has been thorough, scientific and detached. We tried as much antibiotic therapy as we could, ruled out other causes, and at that point he said ‘ I need to have a look at your bladder’. This was March, and by April he’d found mast cells++ and chronic inflammation in the lining and detrusor muscle and diagnosed me with IC – something which prior to the rigid cystoscopy he’d thought ‘very unlikely’ as there was no blood in my urine. But there it was. Once he saw with his own eyes and had the biopsy results, that was that. As yet, we have found no way to help me other than painkillers. Am waiting to see if I will be able to take Elmiron – we’ve applied for it (not licensed in UK) and awaiting the answer. As yet the diagnosis has led to nothing positive and I still remain utterly confused as to the cause of my IC or the cure. In some way it was linked to my immune system being depleted and in some way to the bacteria that must have spread from my bowel – perhaps my bladder got inflamed and then has just stayed that way, unable to heal itself for some reason. That is my story. Don’t feel you are alone in this nightmare. And worry if diagnosis is taking a while; it’s not the end when they diagnose you, it’s the beginning.
Luckily for my diagnosis about 6 months w/ my reg doc who realized after two negative cultures that something was wrong. Then I was sent to a wonderful urologist who knew it before he even did any tests but warned me that they would be painful:( I know that usual diagnosis take much longer unfortunately
I was really lucky. i went to a walk-in clinic in Vancouver with a UTI that wouldn’t go away. After a few failed urine tests, and meeting with three dr’s, I walked away with an appt for a urologist, a recommendation to see a naturopath and a bottle full of Pyridium. The pyridium and naturopath got me through the next three months while I waited to get a diagnosis from the first urologist. He was horrible. Cancelled a few appts on me while i was in the waiting room, hadn’t heard of half of what i mentioned in relation to IC and told me to go home and do kegels. Thanks to the IC Network and a Vancouver support group I joined I found another urologist and asked my walk-in clinic to refer me to him. This dr is a specialist in IC and within two months I was in with him and on Elmiron. Elmiron has worked really well for me. Thing I learned though is you do need to fight, read everything you can and really push for your own health. You can’t trust the dr’s to do that.
4 years of chronic UTIs, 3 different OBGYNs, urologist, neurologist, psychologist and gastro dr until I found an OB who diagnosed me with stage 4 endometriosis after begging him! I had 2 laparoscopies and after months still tons of pain. Finally found a Urogynocologist Who believed me right away! I had a cystoscopy along with now internal PT, aloe pills, diet change and weekly bladder installations. I’m on the right track, but how I miss coffee, a glass of wine, Italian, Mexican and Chinese food. I hope there’s a cure one day!
Many years, 5, until the investigations starts. Laparoscopy, 3 cystoscopies, MRI, ultrasounds. Still not really ‘diagnosed’ with IC, but my particular condition doesn’t appear to have a name. Finally on good pain relief though, and permanent antibiotics.
About a year for me back in 2001-2002 chasing what I thought was a urinary tract infection but tests would all come up negative. I had started on the OB/GYN doctor end of things and was not getting anywhere, meanwhile running to pee like 85 or more times per day, laying in the tub because I could not get back to the bed before I had to go again. Finally I went to my urologist & he did a hydro on me and found the IC. He put me on Elmiron and ever since I have only been going potty 5 or 6 times a day. I have only had 3 hydros in all because they are soothing.
Best thing I ever did was decide never to see a doctor again about IC. They don’t help. They just make it worse. I just watch my diet (gluten free, dairy free) Read the Better Bladder Book.
I went off birth control after 15 years. I thought I had a bladder infection as I had pain in the front and my back and frequent trips to urinate. Put on antibiotics as I had blood in my urine. Cultures always had blood but no infection. I was lucky to have a friend as a Urologist. He did a bladder biopsy. Positive with Mast cells. Diagnosed with IC. I refused Elmiron as it causes birth defects. I wanted to have another child. I got pregnant and all symptoms went away. I lost the baby. All symptoms came back. I got pregnant again. All symptoms went away for 11 months. After that symptoms came back. Went back on birth control and all symptoms went away for years. Symptoms came back. I have found myself going in and out of remission for years. At one point I did the bladder installations weekly finding some relief after 5 or 6 times. I found a doctor who specializes in auto immune diseases. He suggested an antidepressant Cymbalta. After a month on it I found relief. The only draw back is it made me tired. I went down to the lowest dose of 30 mg a day. I hate taking meds. but it worked for me. After I start to feel somewhat normal I stop taking it until I have a flare up again. There is a type of pain receptor in these antidepressants. I hate the disease. I hate having to pee all the time and be in chronic pain when it flares up. I hope this helps someone.
1993-2004: suffered terribly with UTIs for first couple of years…had an old-school (uninformed) urologist who only made matters worse by two urethral tubal dilation/stretching procedures which caused extreme scar tissue. after a procedure to remove the scar tissue, i began to have “infections” but all my urinalysis would come back negative. i’d be in bed with terrible pain, bloody urine, & get a call from the nurse with “good news…no infection!” SO frustrating! i went through three more urologists trying to get answers…was told it was pretty much in my head…i was making it worse by “getting worked up about nothing.” finally, a doctor told me that it was possible to have symptoms without infection, but with no further explanation. that’s when i got online and found out about interstitial cystitis. i took print outs to yet another urologist, and he actually HEARD me! he did several tests; hydrodistension, cystoscopy, CT, bladder biopsy to rule out other ailments like to endometriosis, bladder cancer, etc. finally he gave me the “official diagnosis in 2004.” i was actually relieved when he told me because i had felt like no one understood my pain before that or that they thought i was crazy. immediately began amitryptaline and an exclusion diet. then we move, so i had to search for another urologist and happened upon a urogyno in dallas. she has been such a wealth of information, education and hope. she stays abreast of all the newest info…has even called several times after a seminar to tell me about a new treatment she wants me to try. have gone through several sessions of pelvic floor therapy and now have the home unit. i manage my symptoms most with the IC diet, but i’m also taking birth control to suppress mu periods because they make me flare BAD! my doc has been wonderful with my desire to go as natural as possible, so we are using supplements like aloe vera and marshmallow root to help rebuild the bladder lining (elmiron burned too much!). i use d-mannose instead of antibiotics when i actually do get a UTI. she offers me so much hope that we can tackle this. but, my biggest strength is from my husband and son…they are understanding (most times) and accommodate me when i’m flaring or having a UTI. i struggle with depression from all of this too, but i refuse to let this disease over take me and the happiness i have with my family. it’s still a daily battle to stay disciplined with my diet and taking my supplements. but i’m willing to do it to have some sense of normalcy in our lives and to function like a real wife and mom. good news: my bladder is finally healing…i’m better at managing stress and recognizing my body’s cues to slow down and stay ahead in the pain cycle. i turn 36 next week, I’ve had IC officially for nearly 10 yrs, and i’m hoping for the best year yet. staying connected in the iC community has been key for me to not feel isolated, alone, & as my son would say “mental.” i know there is no cure…yet. but, i am hopeful…
I was in pain for two months before I found a doctor who would listen to me. Then I went though a lot of tests. My doctor diagnosed me and recommended the diet but I was still miserable. Then my dad helped me see a specialist in IC who didnt accept my insurance but this dr changed my life with one medication. I still get pain here and there but I am much better than I was. And I still follow the diet 100%
i started to notice pain around 2006-2007. had a stupid gyno who didnt take my concerns seriously and would just have me try multiple kinds of birth control to solve all my symptoms. Oct. 2011 i see my 4th gyno, finally took me seriously and had me schedule with a urologist so when i was knocked out the gyno cut out endometriosis and urologist did hydrodistention and took pictures of my bladder turning completely blood red. i was diagnosed dec. 2011. didn’t really like that urologist so i been seeing a urogyno and she is very caring and helpful but i still get flare ups. i also suffer with adenomyosis and pelvic floor dysfunction.
I started with IBS and chronic pelvic pain. I was too stubborn to go see a doctor but when I woke up one morning I had symptoms of a UTI. So I went to a family doctor who did a Urinalysis and gave me antibiotics. After the first round of Antibiotics I was still having the burning, pain, frequency and urgency. I went back to the family doctor and was put on Cipro for 3 days. If course that did not help either. On my third visit he told me that there is a bladder condition called IC and to see a Urologist. The first one I saw was not very knowledgable about IC and I decided to get a second opinion. The second urologist had his wife working in the same office as a gynecologist. I started seeing both of them and within 6 weekend I had a Cystoscopy and hydro distinction and an IC diagnosis. At the same time I was also diagnosed with IC’s evil twin, endometriosis. 4 years after my diagnosis I had a partial hysterectomy, at age, 37.
4 yrs 6 specialists ,
About 4o er visits and countless antiboits
And family Dr visits also 2 yrs stright of antiboits to treat a not there uti ? Go figure
When I could finally find a uti to do a hydro I had a urge hunners Ulsar that he layered in the hydro sent me home with no dio
And told me to take Advil for the pain !
I remember having symptoms as early as age 5 or 6 (i had a ureter dialation at 6) and was diagnosed 10 years ago at age 19 after 14 doctors and just about every test known to man.
Many different antibiotics despite negative urinalysis tests and urine cultures. This went on for about 6 months. I was told by a Urologist that it was probably just a viral bladder infection and it would take a long time to go away (what a crappy guess) without doing any type of tests or even reviewing my history of how long I suffered. I did research myself and diagnosed myself with IC. My diagnosis was confirmed by a urogynecologist who specializes in IC (the only one in my city).
It took about a year and a half of negative cultures, it all being in my head, and a certain amount of “this us what you get for having sex before your married” and one doctor insisting it was an std even though the only guy I’ve ever been with is clean. So it was only a short amount of time but it was hellish while it lasted.
I was diagnosed within 7 months from my first symptoms. 2 cystoscopies, 1 abdominal MRI (that was the worst!), 2 ultrasounds, 3 cat scans, 1 nuclear radiation–and more urine samples than I can count. I even had my appendix and gall bladder removed! Was treated for UTIs UNTIL my OB/GYN sent me to a urologist she trusted. He was the 3rd urologist I saw! YOU HAVE TO BE AGGRESSIVE–don’t “wait and see”! If you don’t like one answer, find another doctor! Elmiron, a low-acid diet, and eating LOTS of fiber is helping me! Also, I’m on an antihistamine and Tramadol for pain. I can work, make plans–but my friends and family know I may have to cancel on a moments notice if I have a “flare”. (Why aren’t they called ATTACKS??) Being unreliable for others hurts worst than the pain…
My journey began in 1984 so no one had a clue what was wrong with me. I started with a family practitioner and not a nice one. As I’m on the table with a catheter I had to pee the pain was horrible I told the doctor and he argued with me. He’s like “You don’t have to go to the bathroom, your bladder is empty” And even though I was only 17 and very reserved by nature it hurt BSD enough I made him let me up and of course I peed – drip drip drip! Next I was off to a urologist who wasn’t sure what was wrong but concocted a hellish mixture that he instilled in my bladder and sent me home telling me to hold it in for at least an hour! I made it five minutes down the road pulled into a McDonald’s and let it out! The pain was excrutiating. So next off to the hospital for testing – dye in my kydnyes, bladder filled with water and made to pee in a garbage bag in front of a camera so they could see my bladder work – fun fun times. Diagnosis extremely small bladder normal to pee 10 times a day HELLO I’m peeing a 100 times not 10. I was done with doctors and tests but my Grandma took me to Oregon Health Science UNIVERSITY where they gave me Valium like meds to slow down my Spasmodic bladder Oh it slowed down alright I still had to pee but couldn’t my bladder muscles were drunk and wouldn’t function – talk about pure hell! Next stop a psychoanalysis because it was all in my head and then off to be hypnotized. At this point I was now 18 and totally gave up getting help. I suffered in silence for the next 20 years. Finally I had a new family doctor who had heard of IC and was pretty sure that’s what I had. So she started me on ambatriptolyne ( sp?) This helped my day time pain and let me sleep but after a few weeks my bladder became ten times worse. Because sleeping through the night wreaks havoc on my special bladder. If I go more than two hours tops at night without peeing I pay for it big time. Then came Elm iron which I took for about 8 months with absolutely no change so I stopped. I’ve tried a couple urologists since with no help other than to torture me and confirm the IC diagnosis and show me the lovely ulcers in my special bladder One offered to stretch my bladder while telling me he’s only popped a couple – I opted out. So currently I am without a doctor or treatment sad to say 30 years in and I just live my life to the fullest possible and don’t hide my IC anymore!
I had my first tinges of pain, blood in my urine and frequency of urination when I was about 8 or 9! Worse and worse as a teen and thus began 20 years of testing and no answers…only that it was all in my mind. Sigh, this was in the 60’s and 70’s. I was working, as a teacher, but it was getting harder and harder to hide the pain from the kids. Finally, when I was 34, a urologist diagnosed IC but then all Hell really began. The treatments were brutal, putting Cloropactin (spelling) in the bladder on numerous occasions and all why I was trying to hold down a job. It finally got to bad that I had to apply for disability. Being told for so many years that pain is all in your mind (besides urine full of blood) just seems ridiculous. I hope now that patients are more easily diagnosed. Take care and I hope you all find your answers and some kind of relief.
After multiple very painful “uti’s” and antibiotics I was sent to a urologist. Luckily she listened to everything I had to say, the trigger that sparked her to send me for a cystoscopy was that the OTC anagelesics provided relief & that cranberry or anything acidic made the symptoms worse.
I’ve been living with this for 12 years, luckily I’ve got the symptoms & pain managed most days, I can avoid flares most of the time by using antacids & Cystex with my elmiron prescription.
It was a nurse practitioner who diagnosed me, I was a my urologists office to schedule another surgery when we finally figured it out. Talk about seeing the light at the end of the tunnel.
Two months of frantically searching the Internet to no avail while puzzled doctors kept testing me for UTIs and emptying my bladder. Saw a urologist who finally knew what was going on. Had the potassium sensitivity test that brought much relief, afterward of course, LOL. Had a hydro, followed the diet and took an allergy tab every night until I decided to get pregnant in 2007. Been off the allergy tab and the diet ever since. In remission most of the time but when I get flares I return to the diet, drink plenty of water and use Prelief. Also taking generic brand of Zyrtec every day but not as a direct result of the bladder
I self diagnosed maybe 5 years before I was officially diagnosed by a Nurse practitioner in my new gyne office. My aunt has IC that is so bad she has been housebound for years and has a 2 T bladder capacity . She says she can never sleep more than an hour.i am currently doing well. Was on elm iron for about a year. Stopped taking it due to ins change. Now diet and homeopathic remedies.
Oh goodness, ct’s, ultrasounds, went to 9 doctors. Finally the second Ob/GYN said I think you have IC I’m refererring you to this great doctor that know a lot about it and I went to Dr. Bass in alexandria , Louisiana and then I have had probably 15 procedures, not counting the weekly DMSO’s, I have had 6 bladder distentions, 4 pudendal nerve blocks, several cysto’s , I am currently on neuron tin, diazepam suppositories , vesicare, celebrex, and urelle, and I am partly managed with some pain pills thrown in the mix. UGGHH I hate those two letters of the alphabet!!!!
I went through a solid year of UTI’s and meds one after the other. I was in the dr office once a month. I have great doctors who worked together.
I was really blessed. Went for two or three tests to see if I had a bladder infection. Started the treatment without getting the official diagnosis. For me this has been a two year journey with an amazing doctor and team
12 years nearly 20 doctors and two threats of internment for imaginary pain … 4 cytoscopies, one colonoscopy, 2 ultrasound, MRI and one full of affected rectal and full of drugs and pyridium flomax ex … ELMIRON made the diagnosis and with elavil I was relieved I am the 98% Seignalet regime and I am followed by a clinic specializing in pelvic floored (pelvi santé ) (ostéopatbhie, physio.sexo, accu.) they made miracles especially the osteopathy only my my libido and excitation n is not returned: (
I spent 30 plus years years trying to find out what was wrong. Thought it was all female problems and was very frustrated and in a lot of pain. Yes I spent many,many years looking for a Dr. that would take me serious. The Dr. I see now is a urogynocologist . I was seeing him for my female problems and went in one day with what I thought was a UTI and he handed me a pamphlet about Elmoron and IC and said I think You have this. I had never heard of IC before that. He went in the next week and checked and I have IC but I also had severe female problems and other urinary problems that go along with IC. My bladder still hurts all the time, especially when I pee because my urethra goes into spasms that spread up into my bladder. synthetic hormones after my hysto made it even worse. My body did not like them at all so becareful i’d hate for anyone to go through what I been through. If you feel that the Dr. is not taking you serious, DO NOT GIVE UP. Find one that will!
a lot of pain a plethora of urine samples and antibiotics to no avail a misdiagnosis from one urologist and a finally a second very experienced urologist who understood what I was going through gave me a diagnosis and much needed help. Light at the end of the tunnel for me
I guess I am lucky. My PCP knew what it was from the description of my symptoms on the first visit and he sent me to a urologist who agreed I had IC. However, all of the prescriptions I have tried either were intolerable or didn’t help so it is just getting worse.
from first symptoms to diagnosis = 7 months. I have not taken any prescription medication offered by the Urologist in Vancouver BC. I have managed all symptoms with the food elimination diet and Preleif works wonders when i want acidic foods. I test my urine PH and the all water i drink. City tap water is acidic! 5 in fact which is not good for IC’ers let alone any human. My symptoms went from 10 plus on the pain level to 1-2 on my elimination diet. I also avoid flammatory foods and increase alkaline foods. Citrus is actually alkaline in the body and i cant wait to get back to it! I believe i have started healing my bladder with diet Good LUck!
I was misdiagnosed for 15 years and diagnosed for 15 years. I was told it was in my head and to take a walk on the beach. I went to a new doctor and saw a sign on the wall that said “if you go to the bathroom more than 8 times a day, then tell the doctor.” I was are you kidding me, it was that simple. The doctors never asked me how many times a day I went to the bathroom. I thought 30 was normal, obviously I was wrong. I was finally sent to a urologist. She is the best. I am doing great now. I know how to control it and how to deal with it when it flares. I hope this information helps.
It took 5 months to get diagnosed, but those months seemed like years due to the pain & frustration. Doctors – Primary care, urologist, Hospital ER, back to urologist, physical therapist, gynecologist, uro-gynecologist, then urologist again. That’s way too many doctors… too many appointments, too much money spent. You get the feeling that nobody gives a rats ass whether or not you get better, they just want you to shut up and go away. When I walked in the door, I felt like I was being told, “I can’t help you, step to the next window”. That’s not right, in any way form, or fashion, yet that’s how it played out. Tests during this time – there really were none up until the urogynecologist. He suggested that I should have a cystoscopy done & referred me back to my urologist for that test. If it weren’t for him ordering the cystoscopy, I still wouldn’t be diagnosed.
Those intervening years before diagnosis and seeing that idiot doctor, I was suicidal – didn’t want to live a life with IC, never having room for any other thoughts, just thoughts about pain and when I could get to the restroom. Nights were filled with pain and no sleep. It was a dark period in my life when I should have been most vibrant in my late 20’s and early 30’s. Feel those years were robbed from me. But now all is so much better – medications have truly helped me. I am so fortunate to live during a time when meds help and there are ways to connect with people who also have this condition.
I went to my urologist for two years of treatment for utis. I went to see an infectious disease who treated me with massive doves of antibiotics. The antibiotics wore the enamel off of my front teeth which I had to get capped. In the middle of all of these different treatments I had a colostomy and a reconnection for diverticulitis. We thought that this was the problem. No. My symptoms returned. The next Sept. I was operated on for an extremely large kidney stone. Again my symptoms did not go away. I tried using several natural meds from the health food store which gave me some relief. From that point on my symptoms continued to get worse. I read a very small article about the symptoms of IC. I had everyone of them. I asked the infectious disease doctor if IC could be what I had. He said that it was possible. I went back to my urologist and asked him. He said that IC was very rare and I probably didn’t have it. When he tried to cystoscope me all I did was spasm and cry with the pain. That is when I decided to go on line and research IC and the doctors who dealt with it. I found Dr. Moldwin, who worked out of Long Island Jewish Hospital, and was an expert in the field of IC. I was surprised that I got an appointment for he next week. Although the trip should have taken only a half hour people who live in Nj or NY know that getting across the GWB and the Cross Bronx Expressway, was never easy. It could take me from an hour to three hours to get to the Hospital, with no bathrooms along the way. As soon as Dr. Moldwin and his nurse examined me he knew it was IC. I was given my first instillation that day. I was so excited. I could pee with no pain. This wore off in about three hours but it was the best three hours that I had had in three years. I went weekly for installations for a year. Then we stretched it to two weeks and so on. I did have about five Hunners Ulcers which were painful. That was taken care of also. It has been thirteen years now, I still go for monthly instillations but I found a doctor closer to home who works with me now. Still on some meds, but no heavy duty pain killers. I have learned how to live with IC and can do almost everything. Have to watch my diet, red sauce is the worst along with Granny Smith Apples. But I am living an almost pain free life.
Took 7 years for me and I had doctors who told me it was all in my head – actually a doctor who had treated IC patients in the past had lawsuits against him, so he knew what the symptoms were and told me it was all in my head. What a jerk! After that I questioned myself was there something really wrong. My symptoms were intermittent – so I had periods of wellness but the flares were horrible. Finally went to another doctor but before going did research, came in with the diagnosis, and the doctor stated that I was right, that he had no doubts that it was IC
Took 3yrs for me to b diagnosed went through bout 3catscans,1mri,2ultrasounds,&4docs.I’m very blessed to have an awesome doc.who takes great care of me with my ic
I was born with this. 25 years later my doctor mentioned IC to me. I have been seeing a Urologist since age 5. I never got any help and had no meds at all except infection pills that made everything worse. I still havent got very far with testing now because i prayed for a healing and im almost completely fine. Chocolate and soda is all that gives me problems! The best thing besides Prelief and AZO is a cold bath and icepacks for a flare. It helped me through alot of rough times. Im praying for all of you
I feel I may have been a lucky person, I only had to wait 9 months before I was diagnosed, But I had a colonoscopy , trans vaginal ultrasound, C.A.T scan, millions it seems of urinalysis and pelvic exams, finally a OB/GYN who by symptoms alone knew what was wrong. All the thing she has tried though sadly haven’t worked to help with the pain. I’ll be seeing a urologist soon.
it took 3 years to figure out what was wrong and many different drs. my pain wasnt taken seriously and blamed on womanly things. took four different exploritory surgeries, but i couldnt get the drs to take me seriously, they thought i was overreacting about the pain and all i wanted was help finding out what was going on. not once did i ask for any kind of pain med just help. but through many misdiagnosis they finally did a cystoscopy and laproscopy amd found it and did a baldder distention. which in turn didnt help. still have a hard time having drs understand what i feel and go through.
7 years and 4 Drs and a few trips to the ER. My current Gyno finally figured it out. I went in for the procedure that fills your bladder to test how much it can hold. And it was absolutely the most painful experience of my life. I screamed for it to end and was extremely shaken up about it, so much so I couldn’t drive, the nurse kept saying it shouldn’t hurt at all, we’ve barely put any water in, its only sterile water. I was shaking so bad she had to stop. When I was allowed to relieve myself I had almost instant relief. So my Gyno figured it out.
3 doctors, 8 years, numerous tests and surgery, and finally almost double kidney failure due to one of the quacks. Finally I found a wonderful doctor (in Pittsburgh) who immediately figured things out and helped me on my way to “living” with IC and making the best of each day. My best advise is to be your own advocate, if you do not agree with a doctors opinion or treatments fight to find someone who puts you first and helps you to understand.
I’ve had recurrent ‘UTI’s for at least 20 years. It was so discouraging when my urine tests came back negative for infection, yet I had stabbing pain when urinating, and always felt like I had to ‘go’, even when I didn’t. Finally, a friend who is a GYN NP-C gave me an open Rx for Macrobid, because that’s all that seemed to help. I’d take only as necessary, but I was concerned about all the antibiotics I was taking. I’d already noticed that caffeine aggravated the condition, so avoided it (or so I thought! Still drinking ‘caffeine-free’ diet Coke and decaf coffee), but still suffered with chronic UTI symptoms. During a weekend vacation in Feb., this same friend told me that she suspected I had IC. I’d never heard of it! I did some research, found the IC Network and watched all of Jill’s videos (which was SOOOOO helpful), changed my diet drastically, and can’t believe how NORMAL I feel now! What a blessing…..I still have no official diagnosis, but I see my PCP Monday for my quarterly A1C evaluation, so I’m going to ask for a referral to a urologist. Between my diabetes, Weight Watchers, and now my IC restrictions, the list of what I *can* eat is pretty small! And while I feel so much better, I still desperately miss carbonation, coffee and chocolate!! P.S. When I’m in a ‘flair’, I find that drinking two Alka Seltzer tablets help. I’m guessing they normalize the PH factor in my bladder…..?????
11 years, 4 doctors, countless tests & procedures & thousands of dollars in medications that didn’t help, 2 trips to E.R., and dissolution of my marriage in part due to IC. Finally found the right doc 4 years ago, and a year after that was getting some relief.
I went years! About 12 years ago I started hurting and just about 3 months ago I was diagnosed with IC. I’ve had 2 surgeries for endometriosis and I constantly have ovarian cysts. I thought this was ALL of my pain. At my last pre op I just casually mentioned to my gyno about my severe urgency and he did a cystscopy and found IC, hunners ulcers and my bladder only holds 300cc’s. Now I know why I never had relief, even when I was on birth control pills.
I went through 4 years of hell. Basically I was told I had a UTI every time I went to the doctor. I was constantly in pain to the point I was suicidal. I began to abuse pills and I almost lost my life (age 16). I even had a doctor poke a hole straight through my urethra while trying to insert a catheter cam. Eventually I made it to MUSC and the doctors there found out within a couple months what was wrong. Apparently I have a type of IC where the inside of my bladder attacks itself and scabs up. That was and is the cause of the high white blood cell count. I even got to see the inside of my bladder. It was terrifying but great to know what was wrong. I also have vulvar vestibulitis, which was compounding the pain. One doctor also believes I have endometriosis, but since current treatments are working fairly well I’m not going to invest any money into testing it (I haven’t had health insurance since I was 18. I’m 24 now…eventually I won’t be poor. Lol)
Over 10 years of non stop suffering, three surgeries and many many late nights at the er in massive pain.
Jan 2002, pain started. Thought it was a UTI, went to the gyno two or 3 times, tried Levaquin despite there being no infection in the urine. Finally, she thought it might be “something called Interstitial Cystitis” and referred me to a urologist. One visit with urologist and hydro scheduled for May 2, 2002, which is where I got my official diagnosis. Was on Elmiron for 5 years, had my son in 2007, and was virtually symptom-free for a year after he was born – no reason. Got off Elmiron, had mild symptoms for the next few years, and only since Sept 2012 have symptoms really flared again. Did a bunch of tests to see if it was something else as the pain seemed so different then when I first started with it, but it was the old IC acting differently. Back on Elmiron, I’m miserable. I am seriously considering Interstim.
These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!