Vulvodenia surgery

[1curly1]

Has anyone had surgery for Vulvodenia?? I wasn't sure where to post this. I would like to know if this has been sucessful.

[Shelleynz]

Hi curly

I have Vulvodynia too and have been advised by doctors not to have surgery for it.

Neuropathic Pain Medications have helped in the past but are not so effective anymore.

They would be worth a try for you though.

I've had this 16 years and am an especially bad case.

Regards
Shelley

[1curly1]

I am taking Lyrica for the V. It does help some. I have been trying to research this online. I guess every case is different but, it seems some have been helped by removing Bartholin's glands and /or Skene's glands. Have you taken antibiotics for this conditions?? My started last June--after having several bladder infections. I have tested positive for infection numerous times. However, the antibiotics don't seem to help much and then I get yeast infections.

Has anything help you????

[leelee88]

I have had Vulvodynia for going on 7 years.. I have had 2 GYNS treat me with this condition.. Both agree using medications like Neurontin or Lyrica, Elavil and diet is the best line of treatment..I have not heard of a sugery for Vulvodynia. Now I have heard of a surgery for Vulvar Vestibulitis. But I do not know if that surgery helps or not. I have not researched it..Maybe someone esle will chime in.

[Briza]

Like leelee said, there is a surgery for vulvar vestiubulitis, but not generalized vulvodynia. At this time I think the only person currently posting on this board who may have had the surgery for vulvar vestibulitis is one of our support volunteers, Kara29. She might see your post and respond. If you were to send her a pm might be the best way to contact her about this particular surgery, which I believe is called a vestibulectomy (sp??), and again it is for VV, not generalized vulvodynia. However, a patient can have both conditions...I do. Hope this helps!

But please keep in mind this surgery seems to be done only after ALL other possible treatments and self help and diet have been given a good try.

My VV was sooooo bad the first two years, believe me I would have jumped at the chance, sign me right up had I known about this surgery THEN. But I am very grateful now that I did not know about this surgery because with the right meds and other treatments and self help stuff, the right drs, some lifestyle and diet changes, and just with time itself, both my VV and Generalized V, are very much under control now and have been for some time. So I am glad I continued and DID NOT STOP til I found appropriate treatment, good doctors, etc. Otherwise, had I had the surgery when I was at my worst, I now know that (for ME) it would have been an unnecessary surgery, and I DON'T LIKE PAIN AND I DON'T LIKE SURGERY OR THE PAIN IT CAN CAUSE!!! I have a VERY low tolerance and a VERY long memory when it comes to pain, particularly painful surgeries!

Take care...please read thru the posts in the Vulvodynia forum, both old and new, and you will find much info there regarding the many things that help with VV and Generalized Vulvodynia symptoms and please try your best to try them all before turning to surgery, no matter how many drs you have to see to get the treatment plan that works for you.:flower:

[1curly1]

Thank you for responding. It seems the three of us visit here, often. Maybe someone will see this and enlighten us. I am sorry that both of you have had to put up with this.........it is awful.

[Briza]

To find some enlightenment :) without having to wait for someone to see this thread, you could do an advanced search and type Vestibulectomy in Key words, choose search thread titles only, and highlight to search in the Vulvodynia forum, and then at the bottom of that page click begin search, or go, or submit...can't remember what it says exactly....you will very likely find some threads right now that were posted in the past about this procedure.

Doing the same thing mentioned above, you can also when you type in the Key Word, choose the option of search entire posts. That will bring up any threads that contain posts regarding vestibulectomy.

Choosing thread titles will be more specific
Choosing entire posts will bring up stuff that may or may not be specific to vestibulectomy...either way, make sure to spell the key words accurately, otherwise you might not find anything regarding vestibulectomy, which I do believe is the correct way to spell it.

You can begin an advanced search by looking up above on this page in the blue riibbon where it says search and has a little arrow pointing down and then choosing advanced search and then doing the rest as I posted.

Hope this helps you find some info sooner (like right now) rather than later. Good luck!

[Mary Ann Maurer]

I had a vestibulectomy done in september of 2007 due to my vestibulitis which was localized around my vagina that helped me greatly my recovery was a bit tough I'd say 1month to get somewhat comfortable and a total of 3 mos for me is what it took, I have vulovdyina however that is part of my IC , if you have generalized vulvodyina the surgery may not help.


take care.

[1curly1]

Thank you for posting. Yes, I don't know if surgery would help or not. However, I feel I need to look into all options. Could you possible tell me where you went for the surgery and who did it? I would greatly appreciate the info. If you feel you need to--send a private email.
Thanks,
Betty

[Mary Ann Maurer]

I live in a suburb of chicago,Il I went to see the very well known Ronald Meltzer for this condition he does so many of these he is top surgeon for this procedure he works out of 2 offices one dowtown chicago,il and also northbrook ,il if you need his phone numbers let him know and you can also mention me also.

[1curly1]

Thank you so much for the information. I am going to try to find someone closer to me, if possible. That would be quite a trip from South Texas.

[Angeles]

There are different types of v v surgeries, one is the vetibulectomy (removes more like the whole horse shoe portion of it), perineoplasty, and C -plasty. It all depends on the reason why you are having it.
Since surgeries are irreversible, it shoudl be left as the last resource. Once you have tried all you could, medications and PT. If nothing works, then itis an option, better than being without an option, right?

I've heard great results from it, so if you will have it, after trying the less invasive approaches, don't be afraid to try something that may help your quality of life!

But please be patient and try other things first. If you are in square one after 2 years, I'd give surgery a shot. :)