Vulvodynia Support

Hi. After ten years of misdiagnosis, I've definitely been diagnosed with vulvodynia. My pain is right at the vestibule and only occurs anymore with intercourse and tampon insertion. My doctor recommends that I have surgery to remove the damaged skin around the vestibule. I am extremely nervous about this but would be thrilled if it actually worked.

Has anyone had this surgery? Advice? I'm mostly terrified that I'll go through it and it won't have worked.

We've had a few members here who have had the surgery, I hope they're still floating around somewhere! In the meantime, I think the most important thing with this surgery is to make sure your physician is experienced at doing it.  It's not something you want to go through twice.  It might be hard to do, but you may want to try for a second opinion and maybe a third, just to make sure you're a good candidate.

I'll keep checking back, hopefully someone who has had surgery will post to you! Good luck...

Judie

Co-cl for Birth Control 
Cl for Vulvodynia Support
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(Since Jill has her favorite shoes....)

Thanks. I appreciate your input. The surgeon is definitely experienced, but it will be hard to find a second opinion since she is the only person I've found in the area who even recognizes this condtion.

I've elected to undergo intensive treatments with my acupuncturist in the six weeks before the surgery. If I see a noticeable difference in my pain level, then I'm going to postpone the surgery.

Thanks again.

Hi trwexler,

I had surgery in 2000 for the same condition in Phoenix. The surgery was completely successful, although I have had pain again recently (but I think this is because I had a separate surgery to have a cyst removed and it reintroduced some pain--more on that later). BUT, about the vestibulectomy...

The whole surgery was pretty intense. I'm not going to sugar coat it, there was quite a bit of pain in the recovery. I was home from work for 3 weeks and even when I went back I had to sit on a pillow (boppies, the ones for babies are the BEST for this!!). But even though it was painful, it was VERY worth it to get rid of the pain. About 6 weeks after the surgery they had me start having intercourse again to ensure that scar tissue didn't form and that was tough, too (I don't have kids, but I imagine that this is what it's like after having a baby and you're not sure you ever want someone to touch you again).

A few tips if you do the surgery:
1. Frozen peas--buy several bags in advance and use these as your ice packs--the peas settle in to the right places

2. The boppy--I mentioned this above, but it's the best thing to sit on as you recover

3. Betadine spritzer--you can't wipe after you go to the bathroom for a while, so a squirt bottle with a betadine/water mix can be used to spray on after you go (to prevent infection)

4. Aveno baths--I did 2 baths a day using Aveno oatmeal packets. Apparently the aveno is great for healing the area.

5. Help--you're going to need help with all the basics for a while. I had my mom with me for a week and my MIL for the second week. I couldn't have survived without them.

6. Kolace (sp?)--the first bm after the surgery (and for the first week) is pretty difficult. Take a stool softener before hand and save yourself some extra pain.

7. OK--this is kind of weird--but they suggested that I "work my way up" to the first time we had intercourse after surgery. It's not like sex toys are made to be small, so I was able to get something from the doctor to use. Whatever you find, I suggest that you build up to make it a little easier.

OK--I think that's all I can remember. Surgery isn't something to be taken lightly and I encourage you to be sure you've exhausted any other options that might work. But if you do decide to do the surgery, it's not the end of the world. It hurts, but a lot of pain for a few weeks is better than constant pain for the rest of your life!!

OH--two other things to consider. I've been advised that when I have kids I shouldn't try to have them vaginally. So c-sections are something to consider--after all that work to fix things, there's no point in risking messing it up. Along the same lines, if you have ANY other vaginal surgery in the future, you should consult the doc that's doing this surgery. A vestibulectomy will increase your risk of developing a Bartholin's duct cyst at some point. This is what I had and I let a general gynecologist do the surgery to remove it and I think he messed up the results that my specialist achieved in the vestibulectomy. Just something to be careful with--trust your specialist!!

If you have any questions, you can email me melbeline@yahoo.com.

Good luck!!