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

Fri May 27, 2016 6:50 am by Lucci

Hello,

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

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: 1

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


My Poor mum

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My Poor mum

Post  Paula on Mon Oct 11, 2010 8:31 pm

Hi everyone,
Looking for any help and advice for my 70 year old mum, who has been diagnosed with vulvodynia 2 years ago, she has been put on huge amounts of meds and has seen a gyna, pain clinic but nothing is giving her any relief at all. The strangest thing is that this started with no warning, no uti, no thrush nothing, when i read about others and this problem, uti's and thrush are normally spoken of.

The worst problem she has is sitting down, she cant sit to eat her dinner or to watch tv or when out with friends has to keep standing up as she is so uncomfortable, she also has copd and gets very tired, so all this standing and pain is ruining her life, it is breaking my heart to see her cry and says she does not feel she can spend the rest of her life like this,i just want to find somethin that might help her, has anyone got anymore ideas, doctor is now thinking perhaps to try injection therapy in london? has anyone tried this, or tens machine or acupunture???
Forever hopeful
Paula

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Re: My Poor mum

Post  Sarah001 on Tue Oct 12, 2010 12:33 pm

Hi Paula, a couple of things spring to mind. With your Mum being post menopausal there's a chance it's hormonal. If she's not on HRT it might be an idea to try it and if she is already on it perhaps it needs changing? As she's 70 if there's anything to see on the skin it should be examined by a specialist dermatologist, lichen sclerosis is common in older women and if there's any suspicious lesions they should be biopsied to rule out cancer (not common but if there are any it should be checked in a woman your Mum's age). The last thing is as we get older our muscles get weaker so she may have some pelvic floor issues which a women's health physio will be able to test for. I hope some of that is of help and good luck.
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Re: My Poor mum

Post  tweety on Wed Oct 13, 2010 11:54 am

Hi Paula,

What kind of symptoms is she experiencing?

For short term relief have you got her sitting on a donut to help relieve stress on her body? I also agree with Sarah's suggestions too.

Let us know... we'll help figure out something...

*hugz*

Sue


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Re: My Poor mum

Post  Sebby (Admin) on Thu Oct 14, 2010 7:25 pm


Hi Paula, what meds is she on and what has she tried so far.

Also what is the injection therapy I am due for a nerve block injection soon and another lady who's husband is on here is trying botox injections.

The foam doughnut idea is a great idea..had a quick look on Amazon and this one looks good

http://www.amazon.co.uk/CUSHION-Moulded-Excellent-OPERATIVE-Relief/dp/B001RBZ54C

Sum things that I have found that have helped are:

Not sitting in a bath at all and only showering. I do not use any soaps down there at all only cool water
Wearing only white cotton knickers, no tights no man made fabrics
Wash the knickers on 90 degrees to kill bacteria and do not use any washing powder at all
wear only skirts or leggings as these are soft and do not rub vulval area
Im currently using a TSE/TENs machine..its early days yet but am finding it good...have a flare up at the moment so am seeing in the next few days if the machine will take off the flare up..this is the one im using

http://www.acticare.com/

It is more expensive than a normal tens but it is suppossed to be better..maybe try a cheaper tens for a bit to see if this kind of treatment is beneficial as Ive only just started using it

I do not wear knickers indoors only a long skirt
If pain is bad I take some co-codermol temperarily 15mg - this is cos at present I am already on meds for panic attacks and the anticonvulsants/amitriptalyne may not mix well with these. (sorry cant spell the medicine names well!)

I would also suggest a visit to a womens physical therapist

I do hope your mum can find some relief

Sebby
xx



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Re: My Poor mum

Post  Paula on Thu Oct 14, 2010 9:31 pm

Hi
Thanks for taking the time to answer, she is on gabapentin 800mg a day, amitriptyline 30mg at night co-codamol dont touch the pain tried tramadol, pregabalin no good have bought her a donought to sit on
, i think she should try acupuncture, anything would be good ?????



Paula x

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Re: My Poor mum

Post  jules on Fri Oct 15, 2010 3:18 am

Paula, i know your mom is older so, i don't know how high of a dose they will go on the gabepentin. it took me 3000 mgs for pain relief. it did help, but 900 mgs was not nearly enough for me. I am trying lyrica as well..on 300 mgs..the increase to 100 mgs's gave me relief, but not so much anymore. the donut at all times is a must. she is sitting on her pelvic muscles rather than her pelvic bones..the muscles are wrapped in nerves. besides the biopsy etc.. (i'm guessing they check on all of that if they gave her the Vulvodynia diagnosis? but, you never know). Physical therapy has been helpful for some women. i am seeing a p.t. right now who measured my pelvic floor resting rates, checked my walls etc. (btw..my walls and resting rates are very good) we are working on toning external muscles and i got a prescription for a tens unit (never tried one). so..insurance will pay for one and i will bring it home once the p.t. shows me how to use it. cold gel packs kept in the refrigerator can give instant relief for burning pain. I feel you..i would hate for my mom to feel pain like this.(yes i'm from the U.S. we don't say mum here :-) ) good luck.

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Re: My Poor mum

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