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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: 4

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

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: 3

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

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.


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