Log in

I forgot my password

Latest topics
» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


Success Story - Recovery via Vestibulectomy

View previous topic View next topic Go down

Success Story - Recovery via Vestibulectomy

Post  vulvarpainsurvivor on Mon May 07, 2012 11:19 pm

Hello everyone,

I have a long story but I'll try to boil it down to the essentials. Before I launch in, I want to say this up front: don't give up. Keep trying until you find the doctor(s), other specialists, and treatment(s) that work for you. Because of the rule on this site that says that new members are not allowed to post external links or emails for 7 days, I have had to leave out web addresses below. If you want to find the sites, just Google them.

-I used to have primary provoked vestibulodynia; I suffered from it from the beginning of my sexual life (age 15) to a few months ago (age 34). This resulted in severe dyspareunia--sex so painful that I was unable to have intercourse.

-I suffered in relationships, particularly the beginning of relationships, where I struggled with the emotional issue of how to reveal that I would be unable to have intercourse

-I went from doctor to doctor and to other kinds of specialists before I found my path to healing; lots of doctors had no idea what they were doing and sent me on unproductive and time-wasting treatment plans. Others more or less held my hand and told me I just had to "keep trying" to have sex.

-I spent years trying a variety of neurological drugs, psychotherapy, pelvic floor physical therapy, biofeedback, using various creams, and dilators. None of these solved the problem, but they did help me narrow it down.

I finally visited the Center for Vulvovaginal Disorders in Washington, DC in March 2011. They are also located in New York City and Anapolis, MD. I had to travel halfway across the U.S. to do this, but it was worth it.

After ruling out skin disease, infection, and muscular dysfunction with a variety of tests, the doctor diagnosed me with primary neuroproliferative provoked vestibulodynia, which manifested itself as severe dyspareunia. (I would say the name of the doctor, but I'm not sure I'm allowed to on here.) I'll explain these terms below.

Primary = always had it
Neuroproliferative = excessive growth of nerve endings (in my vestibule)
Provoked = only a problem when being touched--pelvic exams and attempts at intercourse were horribly painful (10/10) but otherwise I did not suffer from pain
Vestibulodynia = pain in the vestibule, which is the area of skin immediately around the opening of the vagina
Dyspareunia = pain with intercourse

The cause is uncertain. Either a birth defect or long-term use of the birth control pill caused it. Either way the treatments proposed were the same. They were:

1) Systemic: using a neurological drug to calm down the nerves. I had already tried this treatment and it failed.

2) Topical: using an ointment or cream of some kind to either anesthetize the nerves or trick them into emitting more (or was it less?) Substance P. To anesthetize, you could use Lidocaine--meaning your partner would have to wear a condom, and you would likely be sore after the effect wears off. To trick them into emitting more (less?) Substance P, you can apply capsaicin nightly. This is apparently the chemical found in chili peppers. It gradually wears down your nerves, basically, and they get less sensitive. The downside here is that it's extremely painful to use at first and only gets a little bit better each subsequent time you use it. Also, according to the doctor, after using it consistently for weeks and then having sex, women report only a 70% reduction in pain with sex.

Because my husband and I wanted to have children, the Lidocaine method was not an option. The capsaicin sounded dreadful, and I didn't want to try it.

3) Surgical: vestibulectomy with vaginal advancement. This would remove the problematic tissue and after a long recovery, most women with my condition report a dramatic decrease in pain and an increase in their ability to have enjoyable intercourse.

I opted for the surgery, and it was scheduled for July 2011 at George Washington University Hospital in DC. After six weeks of recovery immediately following the surgery and three months of using dilators to gradually stretch out the new tissue at the opening of the vagina, my husband and I were able to have enjoyable intercourse. It is not pain free, but the pain is now more like a 1 out of 10 instead of a 10 out of 10. Instead of searing, burning, cutting pain, it feels like pressure, and I enjoy myself. I am able to have orgasms with intercourse.

My husband has been wonderful throughout the process, but this new intimacy in our relationship has awakened joy I didn't even know was possible.

This book was crucial to getting me to fully understand my problem and how to seek help: When Sex Hurts, by Goldstein, Goldstein, and Pukall. You can find it easily on Amazon. It discusses the various causes of dyspareunia in language comprehensible to a layperson. There is a very helpful flowchart in the book that can help you narrow down your problem.

The CVVD website was also very helpful. It has a vulvar pain questionnaire, a few peer-reviewed research studies, and comprehensive documents about the vestibulectomy with vaginal advancement surgery.

I recently found the website for the National Vulvodynia Association. They have a great tutorial for women suffering from vulvar pain. The anatomical diagrams and explanations are fantastic. I cannot emphasize enough the need for women with vulvar pain to understand their anatomy.

There is more to my story, including how I came to the decision to have the surgery, what the recovery was like, what techniques I tried in physical therapy (which while they did not cure me were still helpful), the cost of the surgery and dealing with insurance, how to talk discreetly to friends, family members, and coworkers about the surgery, the benefits of sex therapy with your partner, etc. If you'd like to know more, feel free to message me privately.

Good luck!


avatar
vulvarpainsurvivor

Posts : 6
Join date : 2012-05-07
Location : U.S.

View user profile

Back to top Go down

Re: Success Story - Recovery via Vestibulectomy

Post  smile22 on Tue May 08, 2012 9:08 pm

Hi I don't have exactly the same problem as you, my pain is 24/7 unprovoked and a constant burning, am stuck in everyday and my life feels like its over at 19 having suffered from this since I was 15.. and tried everything but surgery (apparently its not very successful with the type of vulvodynia I suffer with)..... but I just wanted to say thank you for taking the time to write your success story, as when other women like me feel like all hope is lost, things like this help me to feel a little more optimistic for the future. So thank you its not often I see success stories and it has made me feel a little more hopeful that things might improve for me too one day and its great to hear that the problem has decreased so much for you Smile.

smile22

Posts : 51
Join date : 2012-02-07
Location : England

View user profile

Back to top Go down

Re: Success Story - Recovery via Vestibulectomy

Post  vulvarpainsurvivor on Wed May 09, 2012 5:30 pm

Smile22,

You're welcome.

I am sorry for the pain you're in. That's terrible! I urge you to check out the book I mention: When Sex Hurts. Despite the title, it does cover all kinds of vulvar pain, not just the provoked kind.

Have you tried antidepressants? I actually had an unrelated chronic pain problem on the upper right side of my body that was more like what you describe below: pretty much constant and unprovoked. It wasn't terribly severe, but it did cause me to have to stop playing piano and violin and to stop conducting. (I'm a professional musician.) I also spent years working on that problem with different doctors and physical therapists and finally found a neurologist who correctly diagnosed me and put me on antidepressants. They worked beautifully for that pain. I became essentially pain free on my upper right side, and I took up conducting and piano again. The downside was that it took a year of trying different types of antidepressants to find one that both worked and didn't cause terrible side effects. I'm really glad I stuck with it, though. For some reason the antidepressants didn't help with my vestibulodynia, but I've read that for many women they do work for that.

I'm sad to hear you say your life feels like it's over. I know it's hard to maintain a positive perspective in the face of this disease, but perhaps it would help to think of it this way: you're still a young adult with years ahead of you to enjoy wonderful sex, fertility, and health once you do find your solution--even if it takes another 4, 5, or 10 years, that will still be true!

Unlike you, at age 19 I was very much in the "stick my head in the sand" category. I would always mention the problem to doctors, but since they didn't take it very seriously, neither did I until I was in my early thirties. In retrospect, I can't believe I waited so long to start doing research and trying serious treatments. Even then, I had to go through many wrong treatments in order to find the right one. Luckily I was buoyed up by my experience with the other chronic pain, and realized that I was going to have to have a lot of tenacity and patience to deal with the problem.

Have you gone to a clinic specializing in vulvodynia? A lot of normal, well-meaning doctors are not up on the latest research. And a different perspective might be worthwhile.

Good luck!

Vulvarpainsurvivor

smile22 wrote:Hi I don't have exactly the same problem as you, my pain is 24/7 unprovoked and a constant burning, am stuck in everyday and my life feels like its over at 19 having suffered from this since I was 15.. and tried everything but surgery (apparently its not very successful with the type of vulvodynia I suffer with)..... but I just wanted to say thank you for taking the time to write your success story, as when other women like me feel like all hope is lost, things like this help me to feel a little more optimistic for the future. So thank you its not often I see success stories and it has made me feel a little more hopeful that things might improve for me too one day and its great to hear that the problem has decreased so much for you Smile.
avatar
vulvarpainsurvivor

Posts : 6
Join date : 2012-05-07
Location : U.S.

View user profile

Back to top Go down

Re: Success Story - Recovery via Vestibulectomy

Post  smile22 on Wed May 09, 2012 9:11 pm

I will definitely have a look for it on amazon or something, I haven't read it yet as the title made me think it was just about sex so thanks for letting me know it isn't.

yes I have been on a lot of different meds over the years, tricyclic antidepressants, lyrica, gabapentin, normal antidepressant, and many others. I am on antidepressants for depression now too, they don't make any difference to my pain unfortunately. I'm pretty much at the end of the road with medications, have tried tons of different creams, numbing medications, had steroid & local aneasthetic injections down there, all sorts! its a nightmare! i'm quite convinced that the many medications have done more damage than good to be honest.

Thank you, I have some moments when I can think like that then others when it just seems it's never going to go, its very up and down emotionally with pain problems isn't it, especially when its in a place that we dont exactly discuss with everyone we meet! Ah yes I have seen several different gynaecologists over the years and for the last year and a half or so have been to a 'professor'/top consultant in gynaecology and vulval pain, but the problem has just worsened. They don't know what to do with me anymore so they are referring me to a pain clinic, but other than the meds ive already tried I have no idea what they can possibly do any different.

It's a shame your pain wasn't sorted sooner but its great that you seem to have a really positive attitude and that you're still on here to help others. Also glad to hear that your other pain problem didn't stop you from being a musician in the long run. Thanks for your reply and advice Smile.

smile22

Posts : 51
Join date : 2012-02-07
Location : England

View user profile

Back to top Go down

Another book

Post  vulvarpainsurvivor on Fri May 11, 2012 6:20 am

Smile22,

I think you are very brave to keep trying different solutions. I know about the ups and downs of pain treatment. One thing that helped me when I was going through the other chronic pain problem was to take periodic breaks from attempted treatments. Sometimes it was actually just easier to live with the pain for awhile and take time to regather the mental energy to deal with it. I did, at one point, despair, and come to the "conclusion" that I would always be in pain. I was trying to reconcile myself to this when I finally saw that neurologist who successfully treated me. I only ended up going to him because I had another doctor who insisted. The neurologist, bless his heart, had to basically tell me to shut up and listen, because I was so convinced nothing would work, since nothing had yet. (I suffered from that pain for 7 years before finding the treatment that worked.)

Another book that you might appreciate, by the way, is:
Female Sexual Pain Disorders (available on Amazon)

It's by the same authors as 'When Sex Hurts' (Goldstein, Goldstein, and Pukall), but is more expensive and is a clinical book for practitioners. If you can afford it, it might be worth buying to bring to your pain clinic. Or maybe they would be interested in buying it. I didn't buy it but did see a copy at CVVD. I didn't need it at that point, but I think if I had to continue on in my journey, I would have bought it. Yes, it's got a lot of technical language, but after years of treatments, you probably know a lot of the terminology.

The Amazon description is:
"Female Sexual Pain Disorders is a remarkable fusion of clinical and scientific knowledge that will empower women’s healthcare professionals to help their patients in overcoming this common debilitating disorder.

Based on the highest level research, it provides state-of-the-art practical guidance that will help you to:

Evaluate and distinguish the causes of sexual pain in women
Differentiate the many forms of sexual pain
Implement multidisciplinary treatments

Distilling the experience of world leaders across many clinical, therapeutic and scientific disciplines, with an array of algorithms and diagnostic tools, Female Sexual Pain Disorders is your ideal companion for treating the many millions of women who suffer from this disorder worldwide.

All proceeds from this book are being donated to the International Society for the Study of Women’s Sexual Health (ISSWSH)."

You mentioned the awkwardness of discussing the pain with other people. This is a serious issue and very isolating. I hope you have someone you can talk to who is a good listener and trustworthy. My best friend was indispensable to me during my years of treatment. My husband and I also found an awesome sex therapist, and she was very helpful, too.

Good luck! I'm keeping a good thought for you.


avatar
vulvarpainsurvivor

Posts : 6
Join date : 2012-05-07
Location : U.S.

View user profile

Back to top Go down

Re: Success Story - Recovery via Vestibulectomy

Post  smile22 on Fri May 11, 2012 1:40 pm

Thanks so much, I will definitely have a look at the books, haven't got much money right now due to not working because of the pain but hopefully I'll find a discount one or something Smile.

Yes I can talk to my mom about it she has always taken me to appointments and everything too, and i did see a CBT therapist once but as she knew nothing about the problem it didn't really help even though she was very kind. I would consider seeing a sex therapist if my condition improved but right now i don't even want to think about sex because it is so painful even just sitting doing nothing, but will consider it in the future as this problem has definitely shattered my confidence! I know what you mean about being convinced nothing will work, I am in that state of mind now, but hopefully something will come along and make everything less of a problem one day. Thanks again for all your advice I really do appreciate you taking the time to reply, fingers crossed something good will happen Smile!

smile22

Posts : 51
Join date : 2012-02-07
Location : England

View user profile

Back to top Go down

Hello Smile22

Post  lraejenkins23 on Sat May 12, 2012 4:27 am

Hello Smile22. Your story has compelled me to log in for the first time in 10 years. I have been suffering from vestibulitis for 10 years, searching the internet for answers and reading the blogs hoping to figure something out. I have never posted anything before now. You remind me so much of myself 10 years ago. I didn't know what was wrong with me, all I knew was I was in severe pain 24/7. I tried numerous treatments along the years, including just giving up and accepting that I will live in pain the rest of my life. I want you to know that although it is good to give yourself a break from trying to find a treatment, please do not give up. Like I said, I was in pain 24/7 for about 5 years, however, eventually the daily pain stopped but was still there when provoked. I am not sure what treatment I was on when I had this break through (maybe Elavil?)- you see all of this is just a horrible blur to me. Anyway, for the last 5 years I have been pain free on a daily basis, only pain during sex. I had a vestibulectomy about 2 1/2 weeks ago and hoping this is my cure.
Even though I have been through the ringer myself, it kills me to read about so many other women in pain. It is not fair, but we have to keep fighting. If your doctors are fed up with you, go to a new one. If they can't help, go to another one. I know this is hard, and one thing I have learned is that you have to find a Dr. that 1. Cares, 2. won't stop until you are better, 3. is up on the latest technology. I just want you to know you are such a strong young woman- because I know what it takes to deal with this. I am glad you have your mother for support, I couldn't have gone through this without my mother. Please keep us posted on your progress and I will keep you posted on mine. Stay strong:)

lraejenkins23

Posts : 1
Join date : 2012-05-12

View user profile

Back to top Go down

In reply to lraejenkins23

Post  smile22 on Sat May 12, 2012 12:52 pm

Hello lraejenkins23, I am so glad this forum exists as before I found it there's nothing other than the obvious facts about vulvodynia on the internet is there? I'm so sorry to hear you have been suffering for so long but it is quite reassuring (in a strange way) to know that someone was also in pain 24/7 for a long time because lots of women seem to be provoked pain only, and although this is really awful too and I understand how horrible it is, it doesn't have quite as big of an impact on everyday life as thr constant pain. I hope my pain reduces to just being provoked like yours, as it is easier to cope with as I would be able to work and wear most clothes again. I really hope the op has worked and completely cures you, I have been advised against it because it's more likely to help those with provoked V, and also I am very young and as the surgery can go wrong they are reluctant to try it on me, which I agree with because I wouldn't be able to cope mentally if I got even worse. Do you feel the surgery went well? I am really glad you have logged in after such a long time as it really does help others to hear stories like yours and its great to hear stories about improvement Smile.

Yes I have seen what feels like a million doctors, specialists, consultants etc, the last I saw was up to date and quite understanding (although I absolutely hate having to see male doctors, they seem to be more knowledgeable and understanding than any women doctors I have seen!!). To be honest I think the main problem is that there is not enough research on this horrible condition, and therefore there comes a point where if surgery isn't the right thing, treatment can come to a bit of a standstill, which is very frustrating and seems to be where I'm at. Thank you for your lovely comment and advice, really appreciate it, and same here, I've told a couple of friends that I have pain but they don't understand the half of it, so the fact that I can tell my mum all about it really helps. I will keep you posted on any progress, feel free to private message me on here if you ever want to, and you stay strong too, the best of luck with your recovery Smile!

smile22

Posts : 51
Join date : 2012-02-07
Location : England

View user profile

Back to top Go down

I feel your pain (literally!)

Post  Young aussie girl on Mon Jul 23, 2012 1:11 pm

Hi,

I think I may have what you have been diagnosed with though the doctors have simply diagnosed it as vulvodinya. I have had pain from the very first time I had sex, it originates from the opening of the vagina and the physio says that is is the nerve endings specifically that are the cause of my extreme pain. And the pain is mostly caused by touching (though sometimes it happens randomly normally when I have exercised or am particularly tense and stressed).

I have tried the creams and dilators which have improved the inner muscles affected by my pain during intercourse but have ultimately failed to help the nerves. I have just started on the drugs. I think my doctor said if this fails we will try a surgery - which she described as something similar to what you described.

It is heartening to hear the surgery has worked for you though disheartening that the meds did not (I am desperately hoping that it will work for me!)

Also very upsetting that it took you SO long to find relief. I am 21 and was diagnosed last year though pain began at 17. It breaks my heart to think I may live with this for so much longer.... I really wish doctors were better educated and we as sufferers had greater access to aid. I am currently seeing a psychologist who told me she has a lot of other patients who describe a similar pain during sex and wonders if they should see a gyno.. i told her she should absolutely recommend this as you never know.. and doctors often don't!!

Please tell me did it take you awhile to de-condition yourself to associate pain with sex? As I have a lot of trouble with the idea of sex atm because it has always been a 10/10 pain experience for me.

Young aussie girl

Posts : 7
Join date : 2012-02-02

View user profile

Back to top Go down

Re: Success Story - Recovery via Vestibulectomy

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum