I'm sure this is a long shot, but I'm looking for any help/advice possible. I've been have issues with chronic urinary tract infection type symptoms (but not an actualy UTIs) for the last 12 years that have persistenly gotten worse. Thankfully I FINALLY found a specialist who figured out what's going on and diagnosed me with something called vestibulodynia. I haven't been able to ride much at all for over 2 years. The movement in the saddle causes my bladder and urethra to burn horribly, and it doesn't go away once I get out of the saddle. I'm having a vestibulectomy surgery next month that should hopefully fix my problem or at the very least take the pain down to a tolerable level.

So my question is, has anyone else out there been diagnose with vestibulodynia or interstitial cystitis? Did it cause you to have to give up riding? Has anyone with similar issues found a way to make riding more tolerable? My doctor hasn't done the surgery on enough horseback riders to be able to give me an idea of when I can start riding again. There are many variables that will come into play.

I was finally diagnosed with IC last year. I struggled with it forever it seems like. I really tried to keep it to my self for years making other excuses for it.  I took a lot of those AZO tablets that make your pee turn orange which will probably catch up with me at some point.  My urologist pretty much told me I need to make life style changes on my eating habits and there isn't  much he can do for me, which also sucks.  I cut of all caffeine and anything Acidic.

Have was ou tried taking Uqora? It has three steps  of medicine that you can take. I started it 6 months ago and I have had some really good luck keeping my flare ups minimal and less painful.

I wish you luck with your surgery! Trust me I know exactly what you are going through. At 31 years old, I'm  the youngest is the urologist office.

It hasn't been a fun journey.  I'm 32 and have been dealing with this since I turned 20. I tried all the "IC friendly" foods, cut out acidic foods and alcohol, bought expensive supplements, bladder installations etc. Nothing helped!! One doctor suggested Elmiron, but I didn't like the side affects I read it can cause. One lady in my support group took it and it gave her permanent vision problems. Yikes! Now that I know the pain is coming from my vestibule and not my bladder, I don't feel guilty about eating and drinking what I want. No one in my home state of Kansas seemed to have any clue on how to help me. I finally went to San Diego to a specialist and it was best money ever spent! I was also diagnosed with PGAD which I had previously been told was "in my head."

Good luck to you as you manage this awful stuff!!

They think I have ic as well. Mine is pretty well managed by diet so I have not pursued an "official" diagnosis. I would try the ic diet for a few months and see if that helps.

Urologist about 15 years ago put me on a low dose of Nitrofurantoin mcr 50mg. Take it right before I go to bed every night and I have done it with great success.

I was told that it basically stays in the bladder.  I don't know if alot of urologist use this but it has been a gamechanger for me. I am now using another dr since the first retired and he is fine with me continuing it.

I have also been told the 'the ring' helps some women with this issue as they get older. it is a low dose hormone.

Wishing you success because it really interfers with your life when you have them!

I did try the IC friendly diet as well as took aloe vera and marshmallow root supplements and Prelief to reduce acid. None of that stuff helped.

I tried that drug for several months without success, but thanks for the suggestion! I'm hoping the surgery I'm having will help, but I'm pretty bummed about how long the recovery is. My doc's best guess is anywhere from 6-12 months outta the saddle :(

I also have hormonal issues from being on the pill for so long, so I had to switch to Mirena. I don't have periods anymore, so I'm sticking with it!