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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
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» 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


What worked for me - slow and gradual

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What worked for me - slow and gradual

Post  JulesB on Wed Jan 14, 2015 9:36 pm

julie.barrett1 said 5 days ago
I was diagnosed with vulvodynia in June 2013. Being a researcher, I did much research, tried various self-help measures saw a gynochology consultant who put me on traditional medicine, i.e. 20mg Amytriptyline and topical steroid cream, daktacort - this helped for a while and I went from severe pain to mild discomfort over a few months, then I had a Pap smear (that I had already put off for 6 months) and Pow! I was back to excruciating pain and it was stubborn. Any creams suggested by the gyno just stung like hell - only coconut oil soothed. Then I saw a dermatology consultant who specialised in vulva health and she suggested things that she had found worked for her patients: western acupuncture, McTimony chiropractic, pelvic floor exercises, manual desensitisation and, more traditional, upping the amitriptyline to at least 50mg (I could only do this very gradually by 5mg a week). My GP also suggested a topical Gel especially developed for vulvodynia in Italy called Saginil - not available in the uk, but you can buy it online from the manufacturer, Epitech, paying by PayPal, which I have done so several times and it comes very quickly - very expensive but worth it - the first night I tried it I woke up feeling an appreciable difference in pain level. The gel worked, but it was gradual, so I started my own pelvic floor exercises, manual desensitisation and tried the acupuncture - what a difference having a few needles with an electric pulse passed through them made to my life. I believe the manual desensitisation helped a lot too - I had to rub the painful area every day (with coconut oil or a very plain ointment such as Diprobase), starting very gently and only a couple of strokes, slowly building up the duration and pressure day by day, to get the nerves used to accepting touch as touch and not pain. From then on it was a steady progress to being pain free within a few months. I was determined and I took everything gradually, building things up slowly, for example exercise aggravated the condition, so I started by just walking a very short distance and gradually increasing the distance a little bit at a time - as with the desensitisation - slow and gradual. Sitting aggravated it too (I work on a computer most of the time), so I knelt on my chair then got a post birth cushion (a cushion in a ring shape with a hole in the middle) to sit on. It requires a lot of patience and self restraint (I had to give up my beloved belly dancing), it takes a long time - you will not just wake up one day completely pain free; the pain will very gradually subside and there will be blips which can get you down. My consultant dermatologist told me she was very impressed by my restraint - many of her patients will just suddenly go for a 10 mile walk or have intercourse which can send them right back to where they started with the pain. I am happy to report that I can finally enjoy penetrative intercourse with my husband again!

One thing I have learnt from my research is that every woman, every case of vulvodynia is different - the causes differ and can be due to multiple factors and what works for one person will not work for another. One thing my dermatologist said was it is worth going all out and trying all to can to find what works for you. Some things will make it worce - I tried many topical creams until the saginil (lignocaine, hyalofemme, steroids) and they just stung like crazy. I was very very reticent about trying the saginil and it sat in my drawer for weeks until I dared try a tiny bit on a very small area. However I was more than happy to try everything that could not do any harm even if it didn't work - low oxalate diet, various vitamins and other supplements, acupuncture, pelvic floor exercise, manual desensitisation. To sum up - try saginil gel if you can afford it (my GP has found it cures some women within a few weeks), try acupuncture (many people doubt this form of medicine, but it has been shown to work well for neuropathic pain, which is what vulvodynia is). The McTimony chiropractic method works well if the vulvodynia is due to a trapped pelvic nerve, but this was not the case with me(neuropathic pain caused by hyper reactive nerves triggered by recurrent and persistent thrush infections, stress, and chemical trauma from the thrush treatment). The pelvic floor exercises together with relaxation, manual desensitisation and vaginal dilators (those hard plastic things just scared me so I used one finger, then the two smaller singers, two larger fingers, tip of hubby's penis then penis gradually further and further in and LOTS of lube - "Yes" oil based or water based, with all natural ingredients and no nasties being the only lubes my sensitive skin could tolerate) - all these things get the nerves used to touch again and the vagina used to penetration again. The acupuncture and amitriptyline work together to dampen down those over active nerves.

Sorry this has been so long, but I wanted to share what I have learnt over these past one and a half years.

JulesB

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Join date : 2015-01-14

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