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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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