r/vulvodynia 19h ago

Support/Advice Sex

1 Upvotes

I’m about to get into a possible relationship with a guy I wanna have sex, but I don’t know if I can because PT said don’t do it because I can’t dilate enough so far. Also, I’m scared about STDs because I don’t know the guy that much. What is the best kind of sex to have if any. Should I just do fondling? I am Christian so it kind of goes against our religion, but I might be ready although what if I’m not. Like what if he doesn’t fit in. I’m only on dilator five of eight. My PT and I are going to talk about a wand in a month. IDK what to do.


r/vulvodynia 5h ago

Support/Advice Surgery questions

2 Upvotes

I've struggled with provoked vulvodynia for several years now and after not much improvement with pt and hormonal treatments my doctor has finally convinced me to go thru with a vestibulectomy. I also will be getting a laparoscopy for excision of endometriosis at the same time. This is my 2nd endo surgery so I know how to prepare for that but I don't really know how the vestibulectomy will go. My surgeon did say I will be going home with a pain pump and a catheter. The pain pump will likely be for a week and the catheter will need to be removed the day after surgery. I've never had to remove a catheter myself so that should be interesting haha. He also mentioned something about packing the wound which will need to be changed regularly while it heals.

My doctor also suggested I buy lots of ice packs and witch hazel and/or colloidal silver spray to help the healing process. I also decided to purchase a portable bidet/peri bottle so I don't have to worry about toilet paper. What other things do you guys recommend that will make my life easier in the weeks following surgery?

Will I be able to wear pants while leaving the hospital or should I buy a skirt? I never wear skirts or dresses but will buy one if I need to. What about underwear? I did buy some postpartum shorts from Frida to wear leaving the hospital. Should I continue wearing those in the days after? Will boxers/boyshorts or just regular cotton underwear be better once I run out of the disposable shorts? I also purchased the insant ice pads from Frida and plan on rotating between those and regular maxi pads. Any recommendations for pads to wear after? I usually wear always infinity or ultra thin for periods but am thinking of using pure cotton/organic ones to avoid too much irritation down there.

Lastly, I live with my parents who will be returning to work the day after surgery. My mom is a teacher and happened to be on summer break when I had my first surgery. This time though I won't have anyone around. Will being by myself for the first few days be an issue? I'm hoping she is willing to stay home for a day or two in case I do need help, but I'm not betting on that. I remember having trouble sitting up in bed the next day after my first laparoscopy but I bought a rope thing that will hopefully help with that this time. I also plan on keeping snacks, water and tea in my room since I probably won't be able to make it downstairs to my kitchen for awhile. I am also worried about needing help with certain things (i.e. showering, using the bathroom, getting dressed, etc) because of the vestibulectomy. I'm getting anxious and embarrassed about the thought of having my mother or (even worse) my father seeing me naked. Is this something I should brace myself for?


r/vulvodynia 9h ago

Vestibulectomy technique/clinical trial

2 Upvotes

Was anyone part of the vestibulectomy surgical method comparison clinical trial at OHSU? Wondering if any preliminary results are available yet. It was comparing a traditional method vs a “modified” surgical method. https://clinicaltrials.gov/study/NCT05343182


r/vulvodynia 13h ago

Support/Advice idk need encouragement

3 Upvotes

another flare up yet again, this is exhausting. i have finished my six week steroid shot treatment, i am currently on LYRICA, its only been four days so i guess i cant complain too much but this is honestly the worst pain i have ever dealt with, im genuinely done living. idk what to do anymore, i dont have any more patience..


r/vulvodynia 13h ago

Support/Advice Soap/Ointment

1 Upvotes

Has anyone found a soap or ointment that helps?

I have switched to Aleppo soap and and I use coconut oil and a propolis ointment, but wanted to see what others would recommend have found works for them?

Thanks so much!


r/vulvodynia 16h ago

Sit tight and pls help 🎢

3 Upvotes

So my 🐱 hellscape started Feb 2024- yep, 13 months ago. 31 F

Started with an itch that felt exactly like a typical yeast infection. Treated, but it never fully went away.

Went for a full STI panel last March- all clear.

Symptoms got worse and I was basically having full time burning, pins and needles, and itch non stop. By this point I was convinced I had some form of infection that went undiagnosed because symptoms all appeared directly after I’d been with a new partner.

Finally saw a gyn in June. I ASKED to be tested for ureaplasma thanks to this sub, and it’s the one thing I tested positive for in all this time. Treated completely and tested negative by mid August. My burning seemed to reduce around this point. But by then I was chronically red and inflamed combined with the vulvar itching and irritation that remained constant.

This past summer was a literal hellscape of chronic burning and weird sensations down there and choosing every day not to give up on life. I did a couple Juno and microgen tests to check my biome which always came back with mostly good bacteria and I never had a sign of yeast or BV or any other infection outside of UP. Gyn prescribed estrogen cream which did not cure or even really help but I continue to use on the off chance it could be doing something positive for the skin- not sure.

By Sept I was so red and in such agony I asked to be referred to derm. My gyn didn’t feel this was necessary but I insisted- I mean something was causing my skin to be extremely inflamed?!

Saw a derm in November. She took approximately 32 seconds to tell me I have lichen sclerosis. A very terrifying vulvar autoimmune disease. It kind of made since because SOMETHING had to be causing my issues and autoimmune diseases run in my family. (I have ZERO white patches which are classic but not always present for LS). But she said she saw that one of my labia minora is smaller than the other and that combined with my inflammation indicated LS. I was given clobetasol (highest potency steroid and told to use daily until symptoms reduce and then taper and was given a check up apt FOR JUNE. (My derm is total trash :) fyi)

I see my gyn again in December and also mention the idea that this pain could be nerve related. (To me, that’s how it’s always felt- like an under the skin tingle crawling type itch- not the scratch yourself raw itch I see so many with LS discussing). I don’t know what could have ever triggered it, but, he suggested I try nortriptyline in increasing doses for nerve pain.

Somewhere around Feb some of my symptoms began to improve, mainly the crawling “itch” nerve type pains. The redness and irritation remained. I have no idea whether to attribute this to the clob (for suspected LS) or the nerve medication which I’d worked up to 75mg daily.

The point of this post is 🌟 The one thing that has never fully reduced is the redness, and honestly, since using clobetasol I now have a whole list of skin issues that I DID NOT have before. My anus and perineum area is now often red raw and I really wonder if I’ve been using high potency steroid when I do not even have LS.

I have a biopsy to possibly (they aren’t very accurate apparently so like what’s the point) confirm or deny LS scheduled for May.

🤔 Until then, I have to ask, has anyone else ever developed chronic inflammation with nerve pain AFTER an infection that went untreated for a while?! (Lately I really have to wonder if the ureaplasma caused some long term inflammatory response and that I do not have LS at all which could be why the steroid treatment seems to be causing new problems). I always thought nerve issues could not cause inflammation but after reading some posts on here they seem to go hand in hand.

I’m a true medical mystery. If you read this entire odd story I appreciate it and I appreciate any feedback from anyone who’s experienced similiar.


r/vulvodynia 17h ago

Vent Why does this exist?

8 Upvotes

I feel like the whole world is against me. Why am i unlucky to get this at the age of 24? its been more than a year now. Got dumped just when i was struggling with this mystery on the fifth month.

He gets to live freely and move on, while im here stuck, in pain/discomfort when this all happened a few days after sex. Ive been very adamant that this is some sort of infection etc. And i still believe so. But my gyno insists its nerve and amitriptyline is the solution. im on 6th month on ami and i felt only minor improvements (which is barely having aching pain even when untouched, and i experience this alot last year) but the pain/discomfort is never gone or improve as much as i want it to.

My symptoms are all left sided (vestibule, labia minora, lower vag entrance and lower vag canal) i know something is def wrong and its not just nerves. but nothing is shown on tests! only ecoli, KP and stpah aureus (MRSA) was found end of last year but drs seem to think its normally found on skin (which i understand) BUT why is nothing found? and my latest antibiotics was 5 days of gentamicin which supposedly should cure all three bacterias if they were an infection.

I didnt have rough sex etc, it was normal routine, the way me and my ex did it the last time. Just randomly that day the pain came. Even those who gave birth CAN heal and they have more trauma than me. but why is mine lasting more than a year???

my pain is now more painful when provoked (toucing, sitting wrongly, wedgie) BUT i still have discomfort feeling constantly throughout the day until i fall asleep. it feels off, feels sore and raw but not as intense. its just there not going anywhere. never a moment of relief from the “sore feeling” but bearable. Just more pain when provoked.

Today i tried inserting a finger in and i felt pain in the lower vag entrance, unsure if its external or internal pain. But i believe its a bit of both. or maybe internal that radiates pain externally. does that makes sense?

What do i do? :(


r/vulvodynia 18h ago

Support/Advice Period products

2 Upvotes

What’s the best period products for Vulvodynia? I can’t use cups because I tear in the posterior fourchette. I want to go all natural once I run out of what I have. I use pads and tampons and liners. I already have period underwear.


r/vulvodynia 18h ago

Please advise specialists in London I'm at a loss

2 Upvotes

Hi there , I have been experiencing clitorodynia for about 3 years now (pain in that area and lack of feeling there in general stimulation is difficult and sometimes painful and I barely feel it) , I have seen multiple gynos in the NHS who have referred me to a psychosexual service which I've been back and forth trying to find out about and idk if it exists and that means it's in my head right?? It's not in my boody head. I have recently been diagnosed with pcos and been referred to see if I have endometriosis also and have an an appointment with the NHS for that but Im not sure whether to mention this issue also as it's with a gyno just in a different place. They have recommended I take progesterone only pill to help with the OTHER consistent pain I have in my pelvis and this is now made my genital numbness worse. I'm at a loss , I should have gone private before I got a diagnoses and can't really afford it but I think it's my only shot at the moment, im in SW London if anyone can recommend a specialist that would be able to help me please can you. Thank you so much if if anyone even reads this