has anyone here ever had a vestibulectomy?

[sweetpea2555]

Has anyone here ever had a vestibulectomy? I found a new doctor and he is a gyn/urologist. During my exam, he noticed I was having lots of pain where I had an episiotomy after childbirth. He said it never healed right and was still open and he is going to do reconstructive sugery to fix it. Anyway, I am a little nervous and wanted to know if anyone else had this problem. I hear this doctor is great and he has proved himself when it comes to treating IC. He is going to do a Laparoscopy and a Vestibulectomy the same day. I Know the Laparoscopy is a scope but never heard of a Vestibulectomy before. Is it sugery for vulvodynia? Is vulvodynia the same as an episiotomy that didn't heal right? The doc had an emergency and I didn't get to ask so I decided to post it here. My sugery is at the end of March and I don't go again until my next bladder rescue in 2 weeks and I am just a little nervous and looking for some info. Thanks for any advice or info!

[July]

Vulvodynia is not the same as an episiotomy that did not heal right. I have vulvodynia and have never been pregnant and given birth. My understanding is that a vestibulectomy is removal of the vestibule part of the vulva which often causes pain for women with vulvodynia. I believe it is a bit controversial. You will want to do more research before going through with it.

[ads]

I would get a second opinion at the very least. You might want to look into some of the research of Howard Glazer, PhD. Below is a link:

www.vulvodynia.com/fropfm.htm

[Ginny]

Definetly do your homework. There is a surgery for Vulvodynia and I do not have the name of it but was warned not to do it by my GYN.

Ginny

[ChrissyH]

As far as I know, vestibulectomy is more of a last resort treatment for vulvodynia and it is not always effective. Usually, antidepressants and/or creams are prescribed first. Have you also been diagnosed with vulvodynia, or just the episotomy? You may want to talk with your doctor to get more information about why he want's to do the vestibulectomy and if there are other options for you.

[sweetpea2555]

:hi: Thanks for the replies! &Thanks for the link!
I was diagnossed with both. When my doctor said I have vulvodynia, he gave it a long name starting wiht vulvodynia. I tried the creams several times over the past two years, and most made me worse. I just got a mild antidepressant to relax my bladder a few weeks ago. The doctor numbed my bladder and did a q-tip test and I failed. He said there was some damage to my glands after I had my episiotomy, and the episiotomy was comming undone. I never heard of anything like this before. He said the vulv. thing and IC are both causing lots of pain with sex. He also said that he didn't like having to do the vestibulectomy, but he said I need it. My symptoms are severe and I am desperate to get some releif. My doctor has a very good rep and I trust him, but I am nervous. I haven't found any good information on this, everything I read says its bad and don't get it done until all other options have been explored. Nothing has helped yet and like I said, I am desperate for relief. I tried the exercises and it hurt so they said not to do them anymore.
Anyway, after talking to them again, I do have vulvodynia and I have an episiotomy that needs fixed, I just misunderstood the first time.
Does anyone know what causes vulvodynia? Those of you who have it also, do you have lots of trouble with sex? and Has anyone here ever had a bad episiotomy? :help:
I know this is a book, just trying to understand. I have an appt. in several weeks to get a better understanding of everything.
Thanks for reading my book! :)

[Babs RN]

I had a horrible vaginal delivery where I tore all the way into my rectum. Not only had that area not even healed, I also had a rectocele, cystocele, and a fistula where the doc had left a hole between my rectum and my vagina. I had the vaginal floor reconstruction(fistula repair) and rectocele done at the same time with my only remaining fixer upper my bladder which has now headed south into my vagina to where I can actually palpate the bulge. Anyway, I have not had any problems with VV or anything and know nothing about the last ditch surgery for it but I assume it comes close to my pelvic floor repair. Not too bad of a surgery but I was not looking for the same outcome. Once you find out exactly and have done some research, let me know and see if I can relate any of those to my experience.

Hugs,
Barb :)

[July]

Sweetpea-What were the excercises you did that you said hurt?

[sweetpea2555]

July, after I had my son, I triek doing Kegels, ab strengthening exercises and yoga-a special segment to strengthen the lower body. I have tried these several different times over the past two and a half years. Anytime I bend or squat, I have terrible pain. When I do the Kegels, I feel like someone is just pulling tearing and cutting me in my vag. area. I also get a pain starting above my hairline going up my side and in my back and it feels like little knives cutting me inside. The doctor said alot of it is bladder pain, some pain from my uterus, and the rest in the vag.area where I am going to get sug. He said removing the glands will help the vag. pain. I have some damage to my body and I think that is why I was told not to do the things that hurt. If I find some exercises that will help and not hurt more than exercise should, I am willing to try. I am getting fat not exercising!
Babs, are you feeling better now? That sounds like you had a rough time! Is that what they call a sagging bladder?
I am nervous about the sug. I know he is going to do some reconstruction when he removes glands but it is minor. My doctor says he has had alot of good outcomes with his sugerys and has helped lots of ladies get their sex lives back, so I am hoping for the best! I get nervous anytime they put me under. I tried looking the sug. up online and all I found so far is brief descriptions of it and horror stories and everyone saying don't get this done. There are success stories also, they are few. Most of it is people getting it done that don't need it. However, the people that did need it, it helped a great deal so I am hoping for the best! I am going to keep looking to see if I can find more info about it.

[Dianne]

Most people would consider that an outdated treatment and while some got initial relief, within a year it was all back and the procedure itself is horrendously painful. I haven't known anyone so far that didn't regret it. Check with the Vulvar Pain Foundation first. I had very bad VV but have been in remission for many years now. Just the IC I can't fix yet.

[July]

Dianne, How did you "fix" the VV?

[ihurttoo]

I know that this is an old thread, but I just now saw it, and wanted to respond. I have had a vulvar vestibulectomy 3 years ago. It was an out patient sugery. Recovery was a cinch, and I would do it again in a heartbeat. It was the easiest surgery I have ever had, and it fixed about 85% of my vulvar pain. Sex used to be impossible because of this and the IC. Now I do not have the VV pain at all except if my IC is flaring. But on a day to day basis, I no longer have VV pain. If anyone has any questions I will be glad to answer them either here, thru pms, or on the phone. I would hate for anyone to be afraid to do this. It was life-altering for me. I think everyone deserves to have the same relief that I got. Hugs to all, Amy

[olgaf]

Dear Member,

I read you responce on your surgery expereince . I am considering the surgery too after multiple treatments. You mentioned that someone could call you or email you.
Would you mind if I personally email you with queation about a surgery?

my email is olgaf81@aol.com, please, email me to let me know
I`d be happy to hear from you
thanks

[natalie2006]

Hello I can't find a doctor that well do the Vulvar Vestbulectomy. I burn, itch, get white discharge and rawness sometimes. I keep thinking it a yeast infection. What do I do.

[Briza]

Natalie
I struggled with chronic bad yeast infections throughout my 20's. At around 30, they thankfully subsided to mild yeast week before my period. I used to treat it every month with clotrimazole (gynelotrimon). It worked for me well, but a a couple years ago I decided to not treat it anymore, just let it run its course, and I have been doing much better since then. I still get a little itchy before my period, but it takes care of itself by the time my period is underway.
I have had vulvodynia since 2003, same time the IC started, and the symptoms of vulv. can mimic a yeast infection, apparently even more so if you are dealing with pelvic floor dysfunction. I told my gyn recently that my vaginal muscles were constantly clenching (spasming) involuntarily and he explained that this over-working of those muscles can irritate the tender vaginal walls and cause them to be raw and irritated, like a yeast infection. He prescribed 2 mg valium twice a day. I took it as directed for 2 weeks, now only as needed when I feel my bladder or vulvodynia symptoms starting to act up. It has been a godsend. My IC and vulvodynia symptoms are very much related. Bladder pain starts then vulvodynia symptoms set in, then the spasms start. Not fun. But with the meds I am on now, and after talking to my gyn about how to manage my conditions, I am doing MUCH better.
I would suggest that you make certain that it is yeast you are actually dealing with and talk to your doctor about other methods of treating you. I would do this before considering surgery. I must tell you it took a long time for all this to get sorted out, but I really feel we have fine-tuned my meds, and after a lot of trial and error, I have many many more good days than bad.
Best wishes...I hope you find some relief soon.:flower:
PS My discharge changes throughout the month. Sometimes it is white and flaky, but it's not yeast.

[Briza]

Hi Amy
Is this surgery for vulvar vestibulitis, rather than the more general symptoms of vulvodynia (what I have)? From what I understand VV pain is more specific to certain areas of the vulva and vaginal entrance, where vulvodynia can cause sensitivity and irritation covering a much larger area externally, in addition to vulvar and vaginal irritation.
Thanks :)

[natalie2006]

briza I got a question I have itching, burning, white stiff, and rawness down there. You said that VV can miic a yeast ifection? Should I go and get tested to see if I have a yeast infection or what should I do?

[Briza]

Natalie
I would insist your dr check you for both yeast and bacterial vaginosis. Not just a visual inspection, but take a sample and look at it under microscope or whatever procedure they do to make sure you have this or not.
I knew I had vulvodynia for 2 years til May when my gyn finally officially acknowledged it. I went in thinking I had yeast or BV, tests came up negative, we discussed the vaginal spasms and that's when he prescribed valium. It has helped me a lot, but there are other muscles relaxants that can work the same way.
So, yes, I would get to the dr and see if you're dealing with yeast or bacterial vaginosis, and see how things go from there. If you come up negative on the tests, describe in great detail your vaginal symptoms. It took me a long time to put 2 & 2 together and how to describe my symptoms as they related to my IC and vulvodynia.
Hope this helps. :)

[ihurttoo]

Hello I can't find a doctor that well do the Vulvar Vestbulectomy. I burn, itch, get white discharge and rawness sometimes. I keep thinking it a yeast infection. What do I do.
Natalie, the symptoms you described are symptoms of vulvadynia, which is differant from vulvar vestibulitis. A vulvar vestibulectomy while not cure vulvadynia. It is ONLY for vulvar vestibulitis.

I have both conditons. The vulvar vestibulits causes pain at the entrance of the vagina. There are small tender points in the entrance of the vagina (At the vulva), that cause refered pain to the whole vulva, and entry way to the vagina, making insertion of tampons next to impossible and sex extremely painful, particularly upon entry. It also sometimes causes pain to wear blue jeans, or certain underwear or other pants. So, it is bascially about the pain all caused by these tender points.

The way that they d/x this is by taking a Q-tip and touching clockwise around the vulva. At certain parts, you may not feel it at all, but in certain spots they touch, you almost come off the table b/c of the pain, just from being touched by a Q-tip! That is how they how you know if you have vestibulitis, and also, if a vulvar vestibulectomy would help you.

The surgery is done at same day surgery, under general anesthesia. The whole thing takes less than an hour. (About 45 min.) Before they put you to sleep, they do the Q-tip test again, and mark the tender spots for surgery. Then, after you are asleeep, they surgerically remove those tender spots, and kind of move the tissue of the vagina over to cover it and stitch you up. (I had internal, disolvable stitches.) I had this done on a Friday, and really could have gone back to work Mon or Tues if I had to, but they will keep you off for a couple of weeks, if you want them to do so. Ice packs were my best friend for a few days. They also gave me pain meds, and anti-imflammatory, antibiotics (for prophalactic use), and topical Marcaine to numb it.

The surgery was really a breeze for me, (and I am a big wuss who is not very tolerant of pain!!!) It dramatically improved my pain. I would say it took it about 85% away. It also, (in an indirect sort of way), helped my vulvadynia, since the pain of the VV, wasnt setting off the vulvadynia anymore. However, it is not meant for nor will it help vulvdynia if you dont have vulvar vestibulitis too. The best way I can explain it is it is kind of like a hysterectomy is not meant to help IC pain, but it sometimes does, just as a bonus, since the utereus is right on the bladder....it is the same thing with vulvar vestibulitis and vulvadynia. They are both differant conditons in the same body area, so when you fix one, it helps the other. Does that make any sense?

After this surgery, I was able to wear pants again, (even jeans), wear tampons without pain, have sex without entry pain, etc. Also, before I would hurt from sitting in certain postions, or just from sitting at all for too long. That is no longer a problem now either. So, if anyone has Vulvar vestibulitis, I definately recommend this surgery!!

The only thing that you should know is that the tissue they remove, can grow back on some women. Sometimes it doesnt. (I had my surgery 4 and !/2 years ago, and mine hasnt) But, in some women, it can grow back in 6 months, or 3 years. Sometimes it is 10 years later, and sometimes it never does. (It is sort of like endometriosis in that way.) So, for that part, it is a gamble that no one can guarentee. But for me, I was so miserable, I was willing to try anything, and thank God I did!!

My Gyn did the surgery. He had never done one on anyone before me. I had seen him many times. (He was also my OB while I was pregnant.) My VV was so bad, that I would scream (LITERALLY) during pelvic exams. (It was so bad, that his office would schedule me when no other patients were in the waiting room or office, b/c they didnt want to scare others!) When I was pregnant, they couldnt even examine me to see if I was effaced, dropped down, dialated, or ANYTHING!! (My VV was MUCH worse when I was pregnant)

Anyway, 7 or 8 mo, after I had my son, my dr went to a seminar in FL for a weekend and learned about this surgery and how to do it. He came back and called me and told me about it. Obviously, he had never done one, and told me so, but he said it was a very simple procedure, that there was no way he could mess up surgically. So, I said, "Let's go for it!" So we did it the next week! I have no regrets.

I trusted him completely b/c he is also my IC dr. I have been seeing him 2-3 times a week for almost 6 years! (He does rescue instills for me in his office 2-3 times a week. Then, when I was pregnant, I was high risk and had Lupus and toxemia, so he made me come in then twice a week. So, I totally trusted him, and new that he wouldnt do it on me, if he wasnt 100% sure he knew how to do it, and that it would help me. And he and I were right! He still hasnt done a whole lot of them. (Maybe 30 or so) Most women are just terrified of doing it. But, I promise you, it was really not bad at all!!

Well, I didnt mean to write a novel here! LOL! But I hope this infor helps you guys! As for you, Natalie, I think they wont do it on you because your symptoms sound more like vulvadynia that vestibulitis. (Just a thought!)

Hope everyone gets the help they need! Hugs, Amy
I hope this answers your questions. If not please feel free to pm me, or post, or if anyone has personal questions that they dont feel comfotable asking me here, I will be glad to give you my number and we can talk about it on the phone.

[ihurttoo]

Briza,

You are absolutely right about the yeast ans bacterial vaginosis mimicing vulvadynia!! So many people think there vulvadynia flares are yeast and vice-versa! It is so important to get it checked under a microscope EVERY time you are in a flare, to be sure. (It is kind of like when you are having an IC flare, you still need to be checked for a UTI, just to be safe, since it is so difficult to tell the differance!!!!)

I hope that my above post expained the differance between vulvadynia and vulvar vestibilitis. I know that Natalie may have been a bit confused, and I am sure others were too. I sure dont want to leave anyone with the impression that a vulvar vestibulectomy would cure vulvadynia. It is only for vulvar vestibulitis. Thanks Briza, for making sure I clarified!

Natalie,

I hope this post and our previous posts helps to clear things up! If you still have any questions, please let us know.


Hugs to all,
Amy

[redfearn]

Hello :help:

I have a question...to make a long story short (sort-of)..when I first became pregnant with my 2nd child, the OB Dr. put in a cerclage when I was 7 weeks pregnant..I had a cerclage with my first child also at 20 weeks b/c my cervix was too small due to previous pre-cancer surgery...anyway, I had c-sections w/ both of my children...the 1st pregnancy, the Dr's removed the cerclage at 36 weeks hoping for a regular birth, but I ended up having a c-section..with my 2nd, the Dr.'s decided to wait until my C-section to remove the cerclage...well, the Dr. partially removed the cerclage, and I had to go back into the Dr's office days after my C-section b/c part of the cerclage was piercing my vagina and was hurting..it took 3 doctors to try and remove it b/c my skin had overgrown where they had 1st put the cerclage in..By the way, they did not numb me or anything..they kept pulling my skin off. I kept getting infections down there, so I was put on multiple antibiotics for almost 6 months--I ended up getting pseudo colitis and spent 9 weeks in the hospital...after that I had to get my appendix out b/c the colitis spread there. Also, my periods became so bad that I would pass out and have seizures, the Dr's then decided to do an ablation, but to no success...plus my IC was flared up so bad. My urologist called my OB and said I needed a hysterectomy b/c while in his office I again passed out and bleed everywhere. During my hysterectomy (left my ovaries in), the Dr. found a lot more suctures from the cerclage. (Which had been left in there for 1 and 1/2 years).
The Dr.'s failed to mention this and they whited out this info. in my medical records..I proved it through a pathologist report and I got a lawyer. Unfortunately, I just got news from my lawyer that the type of sucture that was placed in me, could not have caused my present illnesses. I could sue for negligence, but by the time we go to jury, with the money I would win, it would all go back for paying everyone off. Anyway, 2 weeks ago, I saw 2 large suctures in the toilet while urinating..I know this is gross, but I picked them up and put them in a ziploc bag. I showed these to my Urologist who said the suctures were rotted and that I needed to find another OB to see if I had more. I went yesterday to a new OB and he could not find anymore, but he said they would have eventually fell out on their own..I'm thinking 3 years later? Well, during the exam, he put the protractor in and swabbed around my vagina area, and said that I was so swollen and everywhere he touched I screamed. I told him I bleed every time I have sex (which is maybe 2-3 times a year)..he said that I had vulvodynia. But he left the room and I checked out. So what is this and is it correlated with IC? I would love any advice as to making the swelling go down. Sorry so long!!!