Vestibulectomy

[Maribeth-rn]

Hi guys. It's been a while since I've been on here. I have chronic IC and have had my Medtronics Interstim implant since 3/05. I also have vulvadynia or vulvar vestibulitis. I am considering having a vestibulectomy. I have it scheduled for May 11th and am a little nervous. As a nurse, of course I have researched the "medical" information, but I feel it is so important to hear from other patients. Has anyone had this procedure? Thanks so much.

Beth

[tigger_gal]

Beth...
I have no nothing to offer inrguards to your surgery, but I did do a google search for you and found this message board. http://www.hisandherhealth.com/cgi-b...2;t=000276;p=0
good luck

[ihurttoo]

I had a vulvar vestibulectomy a few years ago. For me, it was the best thing I ever did. My VV was very severe, (couldnt have sex, couldnt sit, couldnt wear tampons or pants, couldnt have vaginal exams etc.) Now none of those things are a problem. Since you are an nurse and have read up on it already, you probobly already know that it doesnt work for everyone, and that even if it works, there is no guarentee that the tissue that is removed wont grow back. For some, it happens within a few months, others within a few years, and for some, it never grows back. If it grows back within a few months, then they wont do the surgery again, b/c it will just happen again. But, if it takes years, they usually will. So far, mine hasnt grown back.

The surgery itself was a breeze for me. It was done at the same day surgery area, and I went home afterwards. It took about 45 min to do. The pain afterwards wasnt that bad at all. They gave me pain meds, but ice packs helped more than anything afterwards.

If you have any questions, feel free to pm me. Feel free to ask me anything. There is nothing "too embarrassing" to ask me.

Hope this helps,
Amy

[KokoBean]

Hi Beth

I, too, had a vulvar vestibulectomy done last November. I had a difficult time having sex, wearing tampons, and with vaginal exams prior to the surgery. I had a laparoscopy done on the same day. The lap. was much more difficult to recover from. The vulvar vestibulectomy was a breeze. I was given a sitz bath to use which helped a lot. The surgery seems to have helped me a great deal. I am still nervous about having sex but my dr. says that's to be expected after have VV for so long. But, definitely the surgery went well and I had no complications or complaints about it. I also healed quickly afterwards.
Good luck to you and also feel free to ask me any questions anytime.

[Maribeth-rn]

Thank you

Thank you guys so much for all the great information. I'm really struggle to decide what is the best option for me. I think it is definitely worth a try but there is of course always apprehension with surgery. For me working as a nurse is good and bad at the same time. I work on a surgical floor that deals primarily with gastroenterology and urology so I see many patients with a lot of the same issues that a lot of us have including IC. I see the best and the worst so it can make it hard for me. I appreciate your support. I just had to go part time at work today so that I can recover from the pelvic floor and abdominal wall disorders that I have and be able to have my surgery. I'm very sad about that, but I know it is in my best interest. I love my job and I hate not physically being able to do the things I feel I should be able to. Please keep me updated. Thank you again!

Beth:

[catlover2]

I have spent numerous hours searching for a doc who actually knows about and treats VV patients. Would you mind sending me a pm with your doc's name? I am thinking about having the surgery done but I have to find a doc first.

[Kara29]

Beth (You are not alone)

I am going to a have a Vestibulectomy at some point. I see my pelvic pain specialist tomorrow to ask when he will consider doing it, if at all.... I am also going to have Pudendal Nerve Decompression surgery. My Doctors want to do both of them at once but I am wondering if the Vestibulectomy first may be the better way to go.

Amy how long did it take to recover?

On very bad days, I wish I had done it years ago.

Kara

[ihurttoo]

It was honestly the easiest surgery I have ever had! (And I have had alot!) I had it done on a Thursday, and seriously could have gone back to work on Monday (if I was working then and had to.) However, like most surgeries, they usually take you off for 6-8 weeks.

Of course if was about 2 months before I could have sex, but the first time afterwards was miraculous for me! It was the first time I EVER had sex that wasnt excruciatingly painful! It still hurt a little for the first few times after that, but not like PAIN, it was more like a little sore. But, definately nothing like before! And, by about the 3rd or 4th time, it didnt hurt at all! And it still doesnt!

It took about 5 weeks before I could wear pants comfortably. I cant describe the joy of going out and buying pants for the first time since I was a kid! That was an AWESOME feeling! Not to mention being able to have sex without it hurting! But, it is the little things that normal people take for granted that I was amazed I could finally do, like just wearing a tampon! (Who'd have thought you'd ever read a post about how happy someone was to wear a tampon! )

But, if any of you have any questions, I will be here for you every step of the way. I cant wait to read your first posts after you have recovered and get to do your first things too!

Hugs to all,
Amy

[icbop]

questions

I have IC and now VV, but they do not feel like differnt things to me. It;s just that the urethral pain (my only IC symptom) is now all over the vulva. I had a cytso/hydo and v- biopsy a few weeks ago. All it showed was inflammation. I have tried elavail, no good, elmiron, helped and then stopped, and atarax (could not deal with Side-effects). I'd do surgery in a heartbeat if I thought it would help.

Did you have the inflammatory kind (vestibulitis?) or the nerve-pain kind (essnetial?) of VV?

Thanks!

[ihurttoo]

The only tissue that was removed from me was at the opening (entry) of the vagina. It was several small areas (each were about the size of a pimple.) Mine was nerve pain that didnt respond to any meds, (including the neuropathic meds). He didnt go anywhere near my urethra or clitoris. I know my Dr. doesnt do those kinds of surgeries...he only does goes around the entry of the vagina. I dont know if other Drs do or not, or if it is called something else....I am just not sure. But, he and I have discussed this before (regarding someone else, not me), and he said he doesnt do the surgery for anything but the entry to the vagina.

One other thing, alot of people have pmed me that were confused thinking this was a surgery to cure vulvadynia. It isnt. If you have vulvadynia before surgery, you will still have it after surgery. Vulvadynia is more general vaginal pain, itching, soreness, redness, etc. Vulvar Vestibulitis is very focused pain, and settles into small areas mostly at the opening of the vagina. The areas are sometimes as small as the head of a pin, or typically are about the size of a small pimple or blackhead. They are exquisitly painful, but cant be seen by looking. The areas where they are look no different from the rest of the vagina. Vulvar vestibulitis is usually d/xed by The Q-tip Test. They touch you very lightly (no pressure is used) all around the opening, if you have VV, when they touch those spots, you almost come up off the table, it hurts so bad!

From what I have read here, there is a subset of people who have Clitordynia. It is like Vulvar vestibulitis, but it is on the clitoris. I am not familiar with any surgery for this. (I am not saying that there isnt one, just that I dont know about this one.) Hopefully, if someone has had this, they can elaborate more on it and what can be done for it.

Anyway, I hope that helps clarify it a bit more.

Hugs,
Amy

[icbop]

OK, Now I am confused. I am still learning about this. I have general inflammation in the vulva (biopsy results), but the q-tip test drove my through the roof.

I thought that VV was inflammation in the vestibule, and vulvodynia was when there was nerve pain in the area you could not point to ans say 'it hurts right there'. I ahve the "right there" type. Though "right there" has grown from the 'oclock position to the entire ring.

Any info would be helpful. I'm sure the treatments are slightly different, which is why I am curious.

Thanks in advance!

[Kara29]

I will be having a little more than the opening of the vagainal entry removed as I have a left over Skene's Gland that is causing so much pain. I guess every doc does thing differently. I also have what they call Clitodynia. I don't have flares of this often but when I do I want to go through the roof. It feels like paper cuts on that part.....

Thank You for Sharing your experiences on such an embarrasing thing to talk about.

Kara

[ihurttoo]

Since you have the "right there" pain, vulvar vestibulectomy could help that. Beyond that, I honestly dont know what to tell you, since I can only tell you about my own experiances. Maybe someone else can explain this better than I can. What did the Dr. who did the Q-tip test tell you?

I do remember from my post-op report that there were mast cells in my biopsies of both my bladder (during my cysto/hydro) and of my vulva, (during my vestibulectomy). But, I dont know if that is inflammation. I just know it is something that "normal" people dont have.

Wish I could help more, but I am not able to think really clearly right now, since I am flaring and have already thrown all my meds at it, and they have already gotten me "fuzzy".

Hopefully, someone else can explain this. Leelee! Where are you? (She is great at explaining this!)

[Maribeth-rn]

My doctor's name is Dr. Butler. His phone number is 859-381-1066. I first heard about the procedure while I was at Mayo Clinic in Rochester, MN. The gyn doctor there's name is Dr. Amols. The Mayo number is 507-284-2111. I am sure either of those would be happy to talk to you. There is also a VV specialist in Cincinnati Ohio. I don't know the number, but his name is Dr. Baggish. Those would be good places to start. They might be ablt to recommend someone. Good luck with your search. If I can be of any help, feel free to send me a message. Take care.

[Batty]

Hope nobody minds that I'm bringing an old thread back up to the top.

I was diagnosed with IC 2 years ago. I was only recently diagnosed with vestibulitis, but doctors seem to think I've had it as long as I had IC. My symptoms aren't as bad as some of you. I just have pain during the "swab" test. I have a lot of redness and occasional burning. I don't have problem with clothing or sitting, etc. I have not had sex anytime recently, so I don't know if it causes any problems.

The gynecologist I've been seeing tried a combo cream of boric acid/antifungal cream for 4 weeks that didn't help. Today she recommended I have vestibulectomy. To me, it seems a bit extreme considering the other treatments have not been exhausted and since I do not have the constant pain that others have. Should I even consider this? I'm thinking of trying to find another doctor, but it is nearly impossible to find doctors who specialize in this disease.