Dr suggests surgery

[anniepie1976]

I am so scared! I have pretty much been told there is nothing else that can be done for me except some sort of surgery that removes "damaged skin and some labia". It sounds aweful! As if it doesn't burn enough down there! I have the type of vulvodynia that is extreme instense itching all dowm there all the way to the rectum. How would he know what's damaged to be removed! There is no physical evidence that shows it although it feels like there should be! Does anybody know anything about this surgery? I feel like I'm going crazy! All I can do is cry thinking I am going to feel like this the rest of my life! ~Ann

[ihurttoo]

Oh, Annie!! No tears are necessary for this one, except tears of joy! I had it done 4 years ago, and it was the best thing I EVER did, healthwise! Seriously! The surgery is called a vulvar vestibulectomy. They do what is called "the Qtip test" where they touch different areas down there. For me, some spots I couldnt tell when he touched, but others, I would come off the table in pain. Those are the damaged areas, although they look EXACTLY the same as the others. None of the damage was visible.

On the day of the surgery, he did the test again, and marked the areas that were hyper sensitive. (presumably caused by some sort of nerve damage). Then, they took me to surgery and removed them under general anesthesia. The whole thing took about 45 min and then about 1 hour in recovery and then I went home.

After surgery, they gave me strong pain meds, but ice packs and Lidocaine helped the most. (Lidocaine normally doesnt help very much, but when the skin is broken, it totally numbs it....kind of like at the dentist.) He used stitches that disolve on their own (It took about 3 weeks.) Also, I didnt wear pants for a couple of weeks.

Recovery was honestly not bad at all! I am serious! I agree it sounds excruciating, but it was honestly not bad at all! I had it done on a Thursday, and could have gone back to work Mon, if I were still working then. But, he said most people are off about 6 weeks.

Prior to this surgery, sex was impossible b/c of the pain. I also could not wear pants or tampons. It hurt just be examined by a Dr. or being touched by my husband. It was bad. After this, all those things are now possible! It was a miraculous surgery for me, and much easier than I ever thought it would be. (Although, we are all different and everyone recovers differently from things! However, I am a big baby, and it was a breeze for me!) I hope you have the same experiance.

The only thing is things look a little bit different down there now where the skin from one side was grafted to cover the area of another because a larger area on that side had to be removed. But, it just looks a little different b/c of the graft and the scars. But, everything now works right, and I am now longer in pain down there all the time, or from things that dont cause normal people pain.

Well, that is about all I can think of. But, if you have any questions, feel free to ask. There is nothing too personal too ask me. If you want to talk on the phone, just pm me and I will give you my number. I will be glad to answer anything you want to know. I really DO think you are going to be so glad you had this done and look back and think "why didnt I do this sooner?!!!" I sure hope so! I hope this helps, if you need more info, let me know! HUgs, Amy

[ads]

Ann,

I have no idea how many docs you have seen, but from your post you are obviously not comfortable with the amound of information your doctor is giving to you. There are a lot of questions that need to be answered before you can do your risk versus benefit list for proceeding with the surgery. Once, the surgery is done you can't reverse it so waiting and getting a second and even third opinion may open new directions for you or bring you to a new confidence about moving forward with surgery.

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I am so scared! I have pretty much been told there is nothing else that can be done for me except some sort of surgery that removes "damaged skin and some labia". It sounds aweful! As if it doesn't burn enough down there! I have the type of vulvodynia that is extreme instense itching all dowm there all the way to the rectum. How would he know what's damaged to be removed! There is no physical evidence that shows it although it feels like there should be! Does anybody know anything about this surgery? I feel like I'm going crazy! All I can do is cry thinking I am going to feel like this the rest of my life! ~Ann

[ihurttoo]

Dear Ann,

I do agree with Ads that a second opinion never hurts. But, I also don't want you to fear this surgery, because out of all the surgeries I have had, this was honestly, the least painful for me. (So far I have had the cysto-hyrdo, bladder biopsies, breast biopsies, 2 laproscopric surgeries, a total hysterectomy, a C-sect, tonsillectomy and adnoidectomy, an appendectomy, and a laprotomy (exploratory surgery), in additon to the vulvar vestibulectomy. Out of all those surgeries, this was the least painful. Seriously!

I realize that it sounds like it would be the most painful, especially considering how those parts hurt now, and what they are going to do, but it honestly wasnt! I think this is because they remove the tissues (and the nerves) that are causing the pain. There are only a few "trouble-making" nerve bundles down there, out of thousands! So, you will still have feeling there, and be able to be aroused. It just wont hurt anymore to be touched.

Also, you will still be able to have an orgasm, (if you could before.) You will still be able to have vaginal as well as clitoral orgasms, (again, if you could before). It doesn't change any of that. Scar tissue is very minimal because the inscions are so tiny. I had six that were about the size of one of those plastic heads that sits on top of straight pins. (Of course, this will vary on the number and size of your locations, and the skill of your surgeon.)

The only real risks he told me about, were that even with those nerves out, the pain could remain, (a.k.a. Phantom pain). Or, that the surgery could work, but the nerves sometimes grow back in a few months or years. But, for some, they never grow back. Mine was done in Sept of 2002, and have not grown back, but I have no guarentee that they still wont. If they do, he said we would just go back in and do it again.

My surgery was done by my Gyn. Is that who recommended yours and would be doing yours?

I dont want to leave the impression that I am minimizing this surgery, but I certainly dont want to maximize it either. For me, the surgery was a miracle, because everything was so painful before. I wrote my vestibulitis journey for Massagedoula several months ago. She needed the story for a class she was taking. I hope you will read it. I think it will give you a better understanding of why I felt it was such an important surgery for me. I think mine is about the 4th post on the thread: http://www.ic-network.com/forum/showthread.php?t=24537 My apologies in advance that it is so long, but I felt the detail was necessary to fully understand how badly I suffered before the surgery and the lengths I was willing to go to, just to have sex on my honeymoon.

I still agree that no one should have any surgery if it can be avoided, or if there is any thing else that they can do or try that could work. But, sometimes, there are no other options, or things are so extreme, that there really are no other choices. I dont know if your situation is there or not. Only you and your Drs know that, but mine definately was, as you will see after reading my story.

So, please read it, and also, please get a 2nd opinion, and if you still dont feel comfortable or informed enough, by all means, get a third. It cant hurt, and can only help to have more information. But, if you do decide to do it, please dont fear it. I can promise you that the fear of this one was much worse than the actual surgery or recovery, and hopefully if you end up having it done, you will have the same experiance!

Since I wrote that article, several people have contacted me after doing a search on that surgery to see if anyone else had it done. Because I was either the only one on the ICN who had the surgery, or the only one who wrote about it, (or the only story they found), they contacted me for information after their doctors recommended it.

They were all terrified, just as you are, and just as I was. But, every, single one of them that had it, and wrote me back after their surgeries, all said the same thing, that it was much easier than they thought...both the surgery itself and particularly the recovery. They all said they thought it would be more painful than it was.

I dont know if it worked for them and they were able to be painfree with sex afterwards or not, because they all quit coming on here after that, so I never heard back from them, but I take that as a good sign, (although we dont know for sure!)

Also, I gave you my number, so please call if you have any questions.

I hope that you make the descion that is right for you personally, and that whatever you do, you get relief from it. Hope this helps!

HUgs,
Amy

[ICNDonna]

If you're not feeling confident about the surgery being recommended, it's always okay to see a different doctor for a second opinion. That absolutely does not mean you must change doctors --- you can go back to your current doctor for the surgery if that's your decision.

Warm hugs,
Donna