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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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