Vestibulectomy help!

Today I went to see a new consultant for the first time in probably two years and I could not be happier!

Not only was he welcoming, friendly and funny, but he also had huge amounts of time for me. He seemed to understand exactly what was going on within minutes of me sitting down despite never having met me before or read my notes before that morning.

We discussed what I'd been through over the last six years and he asked if I'd been given all the 'it's in your head', 'here's some steroids', 'your muscles are too tight' rubbish that everyone else passes you off with which made me feel a thousand times better immediately. It's been so frustrating to see so many other doctors and consultants over the years and not only have to explain what the condition even is to them but also defend myself when I'm told it's something else.

He had a quick look and did the Q-Tip test, which made me jump off the bed it was so painful, and he pretty much had his diagnosis right there and then. So, I've been sent away with some lidocaine to try for eight weeks. If the pain stops when I use it then he considers that good confirmation of his diagnosis and will then suggest I have a vestibulectomy.

This scares me more than anything in the world. I've heard so many mixed stories about it and most doctors I've mentioned it to have told me to avoid it as the success rate isn't amazing. However, he sent me away with some leaflets and I'm feeling a little more relaxed about it. Apparently there's improvement in 80% of patients, 10% have some noticeable difference and 10% none at all, but none that found it worse which was my greatest fear.

So, has anyone had this done and if so how did you find it? It still scares me so much. The whole thing is pretty terrifying and sounds so painful, but, in a massively shallow way, the thing bothering me the most is how it will change post-surgery. Not to sound like an idiot but it does look pretty good down there as it is, and being only 24 I still consider it quite new & 'tidy' too, so the idea that it will look any different is pretty worrying. But also... Surely this changes the shape and size considerably?! I know it won't be a huge difference, but when you've had it one way for a quarter of a century it's a pretty strange idea that it could be any different.

If anyone has had this done, or if anyone else knows more about it or have avoided it at all, please feel free to jump in and contribute. All thoughts welcome!!

P.S. I have just begun to see somebody new and he has no idea about my condition at all. How soon is too soon to discuss it and how the bloody hell do you begin?!

P.P.S. The consultant I saw today was actually a Professor. Does anyone know what this entails really? I've only ever seen standard consultant/surgeons, and as this was at a specialist vulva clinic I'm guessing it means he's pretty much the bees knees?!

Hi JemimaSurrender,

I had a vestibulectomy 2 years ago, at the age of 19. I totally understand your concern about surgery. When I was looking into it, there wasn't really much information out there. This isn't a common thing for a woman to have done. If you'd like to hear my whole story you can type my user name in the search or look up my older posts. Just so you know, the surgery is not as scary as you think it is. Try not to drive yourself crazy thinking about it if you go through and schedule the surgery. Surgeries are always scary, but this one isn't so bad. The worst part of it is the recovery. I was on bed rest for 2 months. After about two weeks my doctor allowed me to walk around as long as I kept my thighs together, reason being if you walk normally 1. it's painful and 2. it can cause the stitches to pull. The pain is minimal and you bleed for a week. I'd say the first 2 days are the most painful, after that it was pretty smooth sailing. Also, I used a lot of ice! Keeping it cold makes it numb plus keeps swelling down. After the two months I went back in for a check up and I was shocked to find that the Q tip test didn't make me squirm. My doctor was able to insert the smallest dilator in my dilator set. I'd say i'm 95% cured. If I don't dilate regularly I get a little bit of pain, but if I do dilate regularly I almost feel 100%!

In regards to the look of "it", I'd have to say it looks totally normal "down there." I mean I never really looked at it before surgery, but after healing and looking at it, it doesn't look weird or strange like I got something done. No one would ever know, unless they went searching for the scars, which are minimal and are not visible. The scaring is from the cuts they make.

If you have any other specific questions let me know!

Agreed do it best thing I ever did!

Hi guys,

I just wondered if either of you were still around and could update us on your surgery?

My Pain has recently returned, albeit nowhere near the extent that it once was at, and surgery may be something I will consider again in the future if I have no success with other treatments. So I just wanted to know, are you still cured?!

Hi, I seen your post. I had the surgery in January of this year. So far it has been a complete success message me privately if you have any questions. X