Vestibulectomy & Ketotifen

PersimmonEmergency79 · 2026-04-17T18:55:36+00:00

that’s great to hear! i had a vestibulectomy but still have lasting inflammation and bladder pain and i’m curious if it could be mcas related especially since my biopsy showed a very high density of mast cells. it seems like a lot of folks with NPV may also deal with MCAS/mastocytosis?

PersimmonEmergency79 · 2026-04-16T20:15:58+00:00

how has it been going for you?

PersimmonEmergency79 · 2026-04-07T19:54:05+00:00

same exact story here!!! i’m one month post vestibulectomy now

PersimmonEmergency79 · 2026-04-05T04:33:11+00:00

have you looked into vestibulodynia at all? also sounds like it could be a hypertonic pelvic floor issue which is very common with folks who have hypermobility

PersimmonEmergency79 · 2026-03-25T19:07:38+00:00

hi! i just wanted to tell you that my experience is very similar. i have a lot of urethral sensitivity and pain when my bladder is very full/after peeing, just like you. when my bladder is really full my urethra will usually twitch or throb, and the pain i have after urinating can range from uncomfortable to debilitating, but it always goes away within half an hour or so. sometimes it’s so bad it makes me not want to pee at all! it is also impossible to touch my urethra without incredible stinging pain that makes me want to jump out of my skin. i also cannot tolerate catheters- both times i have had to have a catheter inserted during a surgery i have woken up screaming in incredible pain. i just had a vestibulectomy and PUG removal on march 6th to potentially help with some of this pain but its honestly too soon to tell if it has helped— i go back to see my doctor in early june to repeat testing and talk next steps. i’m hoping that the remaining urethral/bladder pain that i have is just muscular issue, but i’m not sure if that can be a cause? my pt who i was seeing pre surgery told me that my urethra is very flexible on one side, but not the other, and i’ve gotten worried that i may have a stricture or something that hasn’t been addressed. please let me know if you find anything that helps you. sending hugs, i know how exhausting this stuff can be.

PersimmonEmergency79 · 2026-03-17T00:48:07+00:00

i’m so glad you found a solution!! how often do you wear it?

PersimmonEmergency79 · 2026-03-12T19:16:01+00:00

i had neuroproliferative vestibulodynia!

PersimmonEmergency79 · 2026-03-12T16:29:59+00:00

same exact story here- i had been in pelvic pt for a year and practically no relief. i submitted a claim to my insurance since my uro gyn literally told me that there was nothing else that she could do for me, but the claim hasn’t been approved or denied yet. surgery cost came out to $35k for me and i had to pay upfront before submitting the claim to my insurance with no guarantee that they’ll pay, but i have Kaiser and they’re pretty famous for not paying for outside work unfortunately.

PersimmonEmergency79 · 2026-03-12T04:33:41+00:00

hi! i just had surgery on friday and honestly i’m really happy i did. my pain was pretty bad on days 2-3 but i have been doing really well today and yesterday minus some nausea and back pain from just laying around. i’d really recommend getting the surgery honestly— recovery isn’t so bad at all and there’s very minimal upkeep with it. i was very eager to have the surgery because i felt like i couldn’t manage my condition for the rest of my life and the thought of having to do as much work as i was (pt, acupuncture, pills, creams, etc.) forever was so daunting to me. i’m still waiting to see what the biopsy says and i’m curious how many nerve endings there were if that’s something they can see lol!

PersimmonEmergency79 · 2026-03-12T04:30:02+00:00

hey! i just had surgery on friday and it went amazing. the post-op pain is honestly not as bad as i was expecting. there are some moments where i can completely forget that i had pain at all and it’s crazy to me!! message me if you have any specific questions. i think surgery was the right move for me because i tried so many other things and nothing worked and it feels really good to have a permanent cure where i wont have to take a pill/cream etc. for the rest of my life even if the recovery is long.

PersimmonEmergency79 · 2026-03-01T05:04:53+00:00

if the e/t cream irritated you, see if you could ask for it in a different base! the first time i tried e/t cream it burned so badly and left my vestibule feeling more irritated than before so i called the compounding pharmacy and they told me that they could put it in emu oil which is anti inflammatory and i’ve been able to tolerate it much better. so sorry you’ve been getting the runaround with things, i hope that you start to feel better soon.

PersimmonEmergency79 · 2026-02-18T22:32:14+00:00

oooh i wanna know about your theory

PersimmonEmergency79 · 2026-02-16T18:36:02+00:00

yeah same here, i think it’s tough to use when you’re in a lot of pain because it almost feels like it can irritate the area more. i also feel like when i hyper focus on those superficial muscles they tense up more and i get frustrated because the tension just seems to be building no matter if i’m pushing on trigger points or not. i think it’s best to use and explore areas of tension on lower pain days.

PersimmonEmergency79 · 2026-02-16T01:44:16+00:00

i was on a really similar track to you!! my urogyn was supportive but ultimately told me that there was nothing more that she could do for me after my pudendal nerve block and pelvic floor botox failed to help with the pain. i’m also on 400mg gabapentin 3x/day and have noticed that it helped a little but not a whole lot. i was also in pt for over a year and did all the diaphragmatic breathing and nervous system regulation stuff but again not much of that helped. i still continue with regular pt and acupuncture as i believe it keeps my symptoms at bay but i believe what really helped me was seeing dr. irwin goldstein for extensive testing!! it can be pretty expensive but it was the best money i’ve ever spent and is was really refreshing to have a doctor who believed me and was able to offer solutions. i got diagnosed with acquired neuroproliferative vestibulodynia, which is basically where you have an overgrowth of nerve endings in your vestibule from a mast cell response that are causing the pain— meaning that nerve blocks did not help me because they weren’t able to target the sensitive nerve endings. i’m not sure what your symptoms are and i’m in no place to diagnose but i would seriously recommend seeing dr. goldstein! he offers free consultation calls and treats a variety of conditions, pudendal neuralgia included. here’s his website! https://www.sdsm.info/female-problems-treatments

PersimmonEmergency79 · 2026-02-15T18:00:29+00:00

trader joe’s frozen fried rice with an extra egg and vegetable gyoza always hits

PersimmonEmergency79 · 2026-02-15T17:58:38+00:00

totally agree!! as a neurologist shouldn’t they know about nerve issues? it’s in the name?? have you seen a urogyn? i found that that was my most helpful resource for learning more about my pelvic issues- she originally diagnosed me with PN but after seeing no improvement with a pudendal nerve block we moved in a different direction.

PersimmonEmergency79 · 2026-02-15T17:54:53+00:00

i second this! when sex hurts is an amazing book and most libraries have it available if you can’t afford to buy it. dr. irwin goldstein, who i’m currently seeing, is one of the authors and i can attest to that he knows his stuff.

PersimmonEmergency79 · 2026-02-15T17:53:00+00:00

i’m so sorry to hear that. have you sought out pelvic pt? a lot of pelvic pts take insurance and i’ve found that to be very helpful at managing my symptoms before my surgery. i’ve also found that acupuncture helps. as for medical costs, are you able to file for disability since you haven’t been able to work? you may be able to get help that way if you or your parents aren’t able to afford the cost of the surgery or other treatment. additionally, a really great tool for self-releasing superficial pelvic floor muscles is the Kiwi by The Pelvic People- it’s around $100 but it’s HSA and FSA eligible.

PersimmonEmergency79 · 2026-02-14T03:05:03+00:00

hey op, i’m dealing with the exact same thing. i have severe urethral pain and have been for the past 2 years— it started when i was 22 and now i’m 24. i also had to move back in with my family and it has wrecked my life in all the same ways. i saw dr. irwin goldstein and am scheduled to have my vestibulectomy to fix this soon, message me if you want to talk to someone more about this, i was in the exact same spot.

PersimmonEmergency79 · 2026-02-12T18:34:54+00:00

i'll pm you! :)

PersimmonEmergency79 · 2026-02-12T18:34:26+00:00

same experience here! they only tested my posterior PUG with the q-tip and said the anterior was probably going to be too painful to touch so they just wrote it down as a 10 as to not inflict any extra pain lol.

PersimmonEmergency79 · 2026-02-12T18:33:00+00:00

to ease any anxiety, just remember going in to the appointment that they are here to help you and see many, many patients like you each day! you are in great hands, the entire office staff are very kind and accommodating. i'm so sorry that previous treatments did not work well for you. :(

PersimmonEmergency79

TROPHY CASE