(Closed) Anyone have, know anyone that has, or even heard of Interstitial Cystitis?

posted 8 years ago in Wellness
Post # 3
Member
1498 posts
Bumble bee
  • Wedding: August 2011

My aunt has this, it’s like having a urinary tract infection without the infection.  So you have similar symptioms, but you don’t have the infection.  It’s just constant inflammation that causes the pain and causes you to have to pee a lot.  I think it took her a while to get any idea that is it what it is, because there’s no way to test for it… it’s just something that doctors assume you have if they can’t find any infection or other cause for it.

Post # 5
Member
4137 posts
Honey bee
  • Wedding: May 2011

i hope you don’t actually have this. i have a friend who has it, and she has been struggling for years. she has tried so many different treatments, medications, diets, and alternative treatments and has never found relief. google the name and you can find some more message board type support groups — i know she uses those a lot. maybe you’ll have better luck than her, but she is pretty miserable with it. sorry, i wish i had better news for you πŸ™

Post # 6
Member
1498 posts
Bumble bee
  • Wedding: August 2011

I do think your doctors are right to keep trying to treat your symptoms to hopefully get to a root cause of it.

I had a recurring UTI for a while and it turned out it was some kind of fungal infection that antibiotics don’t work on (TMI), so I think it’s good that your doctors want to keep trying to ID an actual cause for the problem.  If it is Intersticial Cystitis, then there isn’t really a treatment for it.

Post # 7
Member
38 posts
Newbee
  • Wedding: September 2011

I actually found out I had this years ago and the only way the doctor could tell for sure was to have me do a cystoscopy. This was after I had been to every possible doctor and finally my urologist recommended this to me. I would NEVER do this again though (they actually suggest doing this multiple times to help treat your symptoms) because it was so painful afterwords. I was literally crying while peeing because the pain was so awful. But if you want to know for sure, this may be the route. From this procedure I found out that my maximum bladder capacity is less than 1/3 of the average persons. It sucks! My soon to be mother in law has this as well (Weird coincidence). And she had to undergo this to diagnose herself. Good luck, I hope you find a good doctor who will listen to you! 

Cystoscopy. Doctors sometimes use this test to rule out other causes of bladder pain. Cystoscopy involves an examination of your bladder through a thin tube with a tiny camera (cystoscope) inserted through the urethra. Cystoscopy allows your doctor to see the lining of your bladder. In conjunction with cystocopy, your doctor may instill a liquid into your bladder to help measure your bladder capacity. This procedure, called cystodistension, is generally performed with anesthetics to reduce discomfort.

Post # 8
Member
2018 posts
Buzzing bee
  • Wedding: December 2010

@Meliss, I wanted to post yesterday at work but ran out time.  I had IC 20 years ago (I know, dating myself-I was 23) and I was CURED completely.  Like Brooks, I had the cytoscopy and it totally sucked-hurt so bad after. BUT I had a really good urologist and I had to do the special diet and then I went for treatments for six weeks.  It sounds kind of strange and maybe it was even experimental at the time, but I would go the doctor’s office once a week and he would fill my bladder with a solution (I know, TMI) and I would wait about 15 minutes and then pee it out (ditto TMI).  The idea was to force the bladder to generate a new lining, like a new skin.  It was very uncomfortable but it worked and I haven’t had one issue with IC since then.  In fact, I haven’t even had a regular UTI since then either, come to think of it.

Anyway, I literally have felt your pain.  Google a bit or ask some doctors about that kind of treatment.  I can’t imagine any kind of oral medication would help, especially since my doctor had explained to me that basically, the lining of the bladder is inflamed constantly, which is what causes the pain.  Oh, and I was able to go off the special diet too.

Good luck and PM me if you want πŸ™‚

 

Post # 10
Member
2018 posts
Buzzing bee
  • Wedding: December 2010

Well, guess what? It’s your lucky day! I happen to be from LA  and only been in Maine for the last 4 years.  My doctors’ name was Fred Kuyt (I think that’s how it was spelled) and I’m not sure he’s in practice in anymore but Google him. He used to practice in Century City or thereabouts.  But if not, I have some great BH doctors who might know a good urologist in So Cal, so PM me and I’ll give you some names.  All my doctors from my gyn to my derm are amazing and I’m glad to share:)

Seriously, I know how incredibly lucky I am that my treatment worked and if I can help anyone else, I’m happy to do so.  

Post # 12
Member
2018 posts
Buzzing bee
  • Wedding: December 2010

Oh. My. God. That is totally a sign!  I’m SO glad he’s still in practice.  Wow.  That is just so awesome.  I’m giddy for you. lol  I hope that particular treatment is still in use and if not maybe they have something even better.  Good luck and again, I’m so happy you found him πŸ™‚

Post # 13
Member
1025 posts
Bumble bee
  • Wedding: August 2010

I was just diagnosed with IC, but my uro didn’t do a cystoscopy. But the problem is my dad (who is a doctor) thinks I have endometriosis and wants me to get a cystoscopy to make sure. My the uro told me they weren’t 100% accurate, so I don’t know what to do. 

It is incredibly scary thing to be diagnosed with, and its hard to convey that to people. A lot of people are like, “oh well, you pee a lot. so do pregnant women.” It’s hard to describe that your bladder hurts because well, most people don’t feel their bladder unless they have to pee. It’s hard to describe the fear you get if you aren’t near a restroom. It’s hard to describe what its like to give up tons of types of foods, and that sex (can) be painful and scary. 

I’m trying to figure out what “cures” to try…I’m just taking pain medicine now and no treatments other than the diet. 

PM me if you want. I probably won’t be too much help…I was just diagnosed a month ago. But I don’t know anyone who has had this, much less heard of it!

Post # 15
Member
355 posts
Helper bee

@meliss and @jedeve-

 

I am so sorry to hear about what you both are going through. I can relate to everything you posted.   I was diagnosed with IC about 10 years ago and been in remission on and off ever since.   I’ve tried a variety of things – tons of different medications, bladder instillations, acupuncture, pelvic physical therapy, etc.  Pelvic physical therapy helped a lot with painful intercourse.  I have found what helps the bladder discomfort most is managing my stress (through yoga, meditation) and avoiding certain trigger foods (for me, MSG and hard alcohol) but nothing has been 100% reliable.   Given all the work stress lately with the weak economy, my IC has been going through the roof the last few months so I am back to the drawing board.   Please feel free to PM me if you want — I have tried nearly 85% of possible treatments over the last decade.  Wishing you both health!

 

 

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