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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 6

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 1

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: 6

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.


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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 (Admin)

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