u/PersimmonEmergency79

hi! i’m a bit of a weird case and want to see if anybody has had a similar experience or has any advice. i’m really at the end of my rope here and very desperate for any sort of guidance or answers so i would really appreciate it if somebody would have any sort of input. :(

i was originally diagnosed with IC in december of 2024. since then i have had nonstop bladder pain, particularly after urinating. it kind of comes and goes in intensity but it’s always there. i particularly had severe urethral pains that nothing was able to touch. my bladder feels super sensitive and painful when pressed on. i don’t have a ton of urgency but i urinate more often than others and always have a sort of awareness of my bladder- it feels like it’s being squeezed or like it’s burning all the time. as for treatment- i tried pelvic pt 2x/week for a year and a half, acupuncture, psychotherapy, chronic pelvic pain specialized group therapy, had pelvic ultrasounds and MRIs of my pelvis, stomach, and spine, all of which showed nothing notable. i also had a cystoscopy (with hydrodistention) which showed minor inflammation and increased vascularity, but my urogyn said that it all looked normal and there were no lesions or any bleeding. she did note however though that i had a hypertrophied obterator internus and just general hypertonic pelvic floor muscles at the time. i remember waking up from this procedure SCREAMING because the catheter was so painful and they had to knock me back out. i also tried instillations but could not tolerate anybody even touching my urethra so i couldn’t get that done.

i have also tried a handful of other treatments and medications including:

- mirabegron

- gabapentin 400mg 3x/day

- urelle/pyridium

- baclofen suppositories

- vaginal estrogen/testosterone cream, DHEA suppositories, and supplemental testosterone gel

- prelief

- aloe vera capsules

- marshmallow root

- baking soda in water

- ashwaganda and l-theanine

- vitamin D

- pelvic floor muscle botox (2x)

- pudendal nerve block (2x)

- spinal trigger point injections and epidural

so when none of that seemed to work i saw Dr. Irwin Goldstein at San Diego Sexual Medicine. he diagnosed me with vestibulodynia and after working with him for several months we decided to go with a full vestibulectomy with buccal mucosa graft and periurethral glans removal. i had this procedure on March 4th, and just went to see him yesterday to follow up. i’m healing very well and have ZERO PAIN when my urethra is touched during the q tip test, which is huge, but my bladder pain is persistent. i’m curious if it’s a mast cell issue, since i have other mast cell disorders (chronic sinusitis, rosacea, low blood pressure, IBS, fainting, anxiety, chronic fatigue) and the periurethral glans and 11-1 o’clock area of the vestibule showed an extremely high density of mast cells (i have attached the photos, the red spots are mast cells!), but i don’t know much about this and Dr. Goldstein says that he just wants me to continue with PT for now and see if that helps, but i am so tired of suffering and want to feel like i’m actually moving the needle in some way. does anybody have thoughts on this or similar experience? are there treatment modalities for mast cell related bladder pain? what should i ask my doctor about/for if MCAS could be a factor in my persistent bladder pain? thank you so much in advance.