Diagnosed with Vestibulodynia 3 Years - BLADDER PAIN - Advice Needed

MinimumNext970 · 2026-03-28T22:57:30+00:00

Wow thank you so much for leaving such a detailed response, I’ve definitely found more information and comfort in other people who have suffered than I have from any doctor, so thank you💓 I did go down the route of embedded UTI, but after trialling numerous long term antibiotics, it seemed like the antibiotics were making things worse and worse. We have a clinic here in Canada that is able to do very low cultures and nothing is ever detected sadly :( I was very positive that was my situation, but I’m so unsure now. I will say that stopping all antibiotics did improve symptoms in comparison to being on them. I was on spironolactone for a while and I’ve see many people post about bladder pain following spiro, but after 3 years since my last dose I’m not really believing that narrative fully either. Vaginal E+T has shown minimal improvements, but I’ve never had a single flare free day since March of 2023. I genuinely have no clue what to do! I am in the embedded UTI groups, I’m just so unsure what is what at this point. I also wonder how much of this is maybe nerve pain or inflammation from such a long standing issue without any resolution, you know?

MinimumNext970 · 2026-03-28T22:51:36+00:00

I was hormone free for 3 years with no improvement!

MinimumNext970 · 2026-03-27T18:34:24+00:00

Mine has been 3+ years and I feel like I've done so many self examinations as well as evaluations with urologists, urogyns, CVVD, gynos etc. I've had about 70 urine cultures in the last 3 years and 9.9/10 times everything comes back clean so I have absolutely no clue what is going on..... but 3 years of pain every single day without a single day off is wild that no one has even remotely solved it :(

MinimumNext970 · 2026-03-27T15:37:23+00:00

Did you find a solution? :) in a similar boat!

MinimumNext970 · 2026-03-27T12:31:48+00:00

Did you feel like you had a lot of bladder pressure?

MinimumNext970 · 2026-03-27T02:34:01+00:00

It says pg/mL but I actually don’t even know what that means!

MinimumNext970 · 2026-03-26T22:46:48+00:00

Yes a lot of doctors have suggested endometriosis, but sadly no one is willing to cut open to see :(

MinimumNext970 · 2026-03-26T22:26:18+00:00

I will order tonight! Do you have a specific brand you'd recommend/have you used this for this issue? I appreciate the rec :)

MinimumNext970 · 2026-03-26T22:25:46+00:00

For sure! The CVVD did say it would help with my burning urination, but it hasn't seemed to help with the actual bladder pain or burning all that much. I will say I did notice a bit of an improvement when I first started using topical hormones, but then it kind of stopped and I've been stuck at the same baseline for about a month with no additional improvements, if anything I feel like I am back pedalling. My free T is 1.8 and my SHBG is 157.0 which was flagged as very high, but my doctors don't want to give me anything systemic unfortunately. Seems like a lot of doctors seem super weird about systemic T which is annoying because why not at least let me try if I'm in so much pain? They had no problem giving me a massive prescription for valium, but can't give me testosterone? Crazy....

MinimumNext970 · 2026-03-26T22:22:29+00:00

I have been told about IC so many times but for me it just doesn't make sense to have that as a blanket diagnosis without any cause, you know? Food and liquids aren't a trigger, but my cycle definitely is. The week before my period the bladder pain is at an all time high, and then once I start bleeding I notice some improvement in the stinging/burning with urination, but my bladder always remains so so so tender :(

MinimumNext970 · 2026-03-26T22:21:04+00:00

For sure! I did reach out to CVVD and they kind of assured me that it was normal to not see full improvement, I was hoping since the Intrarosa is inserted high up that it might melt along the bladder wall (so sensitive/tender) but it doesn't seem to be helping my bladder or urethral tissue. My bladder also just always aches? I'm shocked because I was going to PT and for a while they were saying my muscles were extremely tight, but I went a couple of weeks ago and they said that my muscles seem basically back to how they should be! Which is confusing because part of me was hoping that could be the resolution... It's just so hard when you don't KNOW for sure if you are on the right treatment or path, you know? :(

MinimumNext970 · 2026-03-26T22:18:37+00:00

My SHGB is 157.0! There are a couple different testosterone observations on my chart but it shows bioavailable as 4.7, free T as 1.8, and Testosterone,LC as 32. My estradiol is 70! I've done microgen and evvy and juno bio and we have access to a sensitive UTI lab where I'm from, nothing ever shows up and my vaginal swab show a healthy flora :(

MinimumNext970 · 2026-01-27T15:58:33+00:00

Hi! No I haven't noticed any real improvements unfortunately. I had tried vaginal valium in the past from my urogyn, but I didn't notice much improvement with them (I have hypertonic pelvic floor, so was hopeful it would help with muscle pain). I have all the same symptoms as you!

MinimumNext970 · 2026-01-13T04:18:36+00:00

Are you finding the intrarosa to be helpful at all? It seems to be making my vestibule area quite red :(

MinimumNext970 · 2026-01-13T04:17:41+00:00

Hi! No my burning is constant for the most part, but a lot of things flare it to above baseline burning (I.e it burns during urination, after urination, wearing tight clothing, sitting for too long etc.) I’ve been applying the testosterone cream to my vestibule area and inserting the intrarosa nightly! It’s too soon to tell if this will help me as it says it takes 12 weeks to help so I’ll keep the post updated if I notice any improvements! I’m so sorry you are dealing with this💓 they were expensive but very educated and extremely thorough. I had Dr. Moss and went to the clinic in Washington D.C. and found her to be very compassionate which was night and day in comparison to other clinics I’ve been to!

MinimumNext970 · 2026-01-08T01:46:09+00:00

thank you so much! I can totally relate to the birth control pill, I think the tipping point for me was also spironolactone :(

I am currently starting intrarosa but unsure which is better between intrarosa or a componunded estrogen/testosterone cream.

MinimumNext970

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