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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» 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

» 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


My Story- my pain and my advice about possible options for pain

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My Story- my pain and my advice about possible options for pain

Post  jules on Thu Mar 25, 2010 1:12 am

hello, I am a 44 year old woman who was just diagnosed w/ generalized Vulvodynia on 12/31/09. For those who may not know...generalized Vulvodynia involves pain all over the Vulva. Like everyone else, I was treated for six months for yeast infections and bacterial infections I did not have. For me it only took 5 doctors to give me the correct diagnosis. Today I have seen a total of 8 doctors. My final diagnosis occurred in Rochester, MN at the Mayo Clinic. Lucky for me...I only live about an hour and 20 minutes from the Mayo. I have researched this disorder for months. I have been online, meeting with doctors and reading books. After, months of horrific burning pain to the point I couldn't sit, had to leave work early and used cold gel packs up to six times each day, I have some relief. The only medication I have been put on for this disorder is Neurontin (nerve blocker). My docs started me out at 600 mgs....I am now taking 3000 mgs. Like everyone else, I have tried every cream and ointment under the sun. ALL completely irritate my skin. I even tried natural oils etc.

I have decided I will not give up until I find more relief. I went to a holistic doctor not covered by insurance. He ran a battery of tests on me and found me to be deficient in some vitamins...and to have a low thyroid. I am giving myself vitamin B12 shots every three days, taking a number of vitamins and hoping. This doctor referred me to a allergist in LaCrosse, Wisc. The allergist is known all over. His focus is allergies and women's issues. I have read at least one research study that suggested there could be a connection between Vulvodynia and allergies. They just don't know. That appt. is in May. Both my holistic doctor and my Gyn recommend that I cut out alcohol, sugar and caffeine. My holistic doc doesn't want me to have sweetener either. At this point, i have not cut out these foods/drinks....I gotta have some fun.

In the meantime, I am trying conventional methods. I have two foam donuts I sit on. One is at work and one is at home. I ordered them online at a medical supplies store. I recommend them. They help avoid direct pressure on the Vulva that we normally get when we sit. Also, I asked my GYN for a referral to a pain clinic. I HIGHLY RECOMMEND YOU ALL GO TO A PAIN CLINIC TO MANAGE YOUR PAIN. This is a recommendation the vice president of the National Vulvodynia Association gives. That is the first place one should go. I went there to have a nerve block. Now, nerve blocks are iffy as to whether they can help take the pain away or not. My GYN told me it has helped some of her patients. The doctor I met w/ told me he has seen many women w/ Vulvodynia and that blocks can help. He also told me this is a very difficult disorder to treat. I had the first block one week ago today. I don't think I have noticed a difference. I have another block scheduled in one week for a nerve a little higher in the spine than the last. There is pain involved w/ the blocks..but, if it works it is worth it. I was told I will then likely have one in 3 months, six months and one year and maybe done. I also will be referred for physical therapy and my guess is part of that will be biofeedback which some of you may have read about in the book 'THE SURVIVAL GUIDE FOR VULVODYNIA" Oh, for those of you who have the Vestibules Vulvodynia alone...I would look into surgery. I am told there is a 93% success rate in relation to pain. I am not able to have the surgery as my pain is all over.

I will keep you updated on how the next block goes. Thanks for reading.... you are not alone and we can make it through this.

jules

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Re: My Story- my pain and my advice about possible options for pain

Post  Sebby (Admin) on Thu Mar 25, 2010 9:27 pm

Hi and thanks for sharing your story.

I have a soft cushion that I use at work but I have thought about using a doughnut especially at home when im on the computer. I will get on Amazon and order one! When Im sitting on the sofa I tend to sit sideways so Im not putting pressure on my Vulva. Its amazing how many different ways you find to sit and then end up with a dead leg and achy back!
I was wondering about allergies and Vulvodynia as I have very senstive skin anyway. I can only use certain products on my skin and can only use non-bio washing powders. I also have to wear cotton only white knickers. I am prone to rashes and skin probelms anyway. I also suffer terribly with hayfever so am very prone to allergies.
I had not really thought much about food and drink but I have begun to try to cut down on caffine. I have had a stomach acid problem for a few months now so have to be careful what I eat anyway.
I think the pain clinic advice is very good advice, I will speak to my Gynea about that so let me know how the nerve blocker works for you.
Thank you so much for your advice it all helps and I wish you all the best in your recovery.

Sebby
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