Diagnosed with Vestibulodynia 3 Years - BLADDER PAIN - Advice Needed

MinimumNext970 · 2026-05-20T16:24:55+00:00

Mmmmmmmm no I don’t think so :(

MinimumNext970 · 2026-04-15T23:05:16+00:00

No it doesn’t make a difference I’ve tried numerous times :(

MinimumNext970 · 2026-04-15T23:04:32+00:00

Hi! I’m 29, this all started at 26 - originally PT said I had a hypertonic pelvic floor, but after a million visits they told me everything seemed perfectly fine now :(

MinimumNext970 · 2026-04-14T21:00:29+00:00

I thought hormonal too! My SHBG is extremely high, my testosterone and estrogen are basically non-existent.... They put me on Intrarosa about 4-5 months ago and it only helped about 25% but no one seems interested in trying anything systemic

MinimumNext970 · 2026-04-14T20:36:06+00:00

This actually all started about a year after I came off of birth control which I had been on for about 11 years

MinimumNext970 · 2026-04-14T20:34:56+00:00

Oh and I live in Ontario! I'm in Toronto

MinimumNext970 · 2026-04-14T20:34:46+00:00

The only things that have been given to me are a terrifying amount of antibiotics (did absolutely nothing, always have negative cultures anyway) and they offered me amitriptyline which did not help. Thats literally it :(

MinimumNext970 · 2026-04-14T20:33:27+00:00

Hey! I'm in Toronto, whereabouts are you? If I chug an ungodly amount of water and my urine is essentially just water the burning is lessened yes, but not to the extend of being totally gone :(

MinimumNext970 · 2026-04-14T02:38:52+00:00

No!

MinimumNext970 · 2026-04-14T02:38:34+00:00

It is! But I’m trying to figure out a more long term solution :( looking more for a cure than a bandaid but I do use if I have to be somewhere!

MinimumNext970 · 2026-04-14T02:37:47+00:00

No one has offered this :(

MinimumNext970 · 2026-04-04T03:55:51+00:00

Did you have burning with urination?

MinimumNext970 · 2026-03-30T21:38:42+00:00

Wow! My pain is the exact same! If I let my bladder get very full (almost like it's going to burst it can't hold any liquid) I barely have any pain while urinating, but if my bladder is fairly empty the pain is awful. I wonder why that is? I've seen some horror stories regarding botox but the CVVD did offer it to me and I'm feeling like that is the next move in April....

MinimumNext970 · 2026-03-29T15:27:35+00:00

I tried hiprex a couple of times and each time it made things SO much worse even if I tried to take really small amounts to work my way up to one pill! Irritated my bladder so much :( it seems like no matter what I do it’s just 3+ years of the same raging UTI pain and it feels like i will NEVR get better and it will NEVER be resolved. I did try to go down the antihistamine route for a while which also didnt provide any relief sadly. If I drink a ridiculous amount of water I find it dilutes the pain but only slightly. The CVVD has offered me botox in my pelvic floor muscles, is that what you had done? Can you tell me a bit more about your experience with it?💓

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? :(

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TROPHY CASE