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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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


ALMOST CURED....

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ALMOST CURED....

Post  mac2011 on Fri May 20, 2016 2:22 pm

Hi,

I've just joined today. I was finally diagnosed with Vulvodynia a few months back, after I'd had it for over a year. A year and a half later I feel I am 99% cured. I just want to say that it can get better because for long time I didn't believe that.

I sympathise with anyone going through this because it's hard to discuss with anyone as it's such a sensitive topic. These forums were the only thing that helped me; doctors, gynaecologists, dermatologists seemed uneducated about this condition admitting 'knowledge of this condition is still in its infancy' and could not empathise with the pain. Luckily my partner was a great support.

For the first few months I tried aloe vera creams, apple cider vinegar, ice packs, cold showers, baking soda baths, canestan cream, each providing only a small bit of relief. As it got worse and I could barely walk anywhere I was put on dermovate, a steroid cream, that didn't have any effect. I put on a stone because it was painful to walk or move which also made it difficult to work : how to sit in a chair for hours, what to wear that was both professional and loose, and having to try to walk 'normally' around people even though it hurt.

I felt very fed up as the pain seemed endless, and it affected my sleep, distraction is always good- if you can be distracted by a book or a film ... I ended up changing my diet, not drastically, but I cut out as many processed foods as I could e.g frozen pizzas, noodles, potato chips, takeaways, alcohol and coffee and started eating more fresh fruits, vegetables, fish, water. I also forced myself to go on a walk every day, even just for 10 minutes, when it was painful and embarrassing because I was walking like I had a limp. Often I'd wait til it was dark outside to go walking to avoid embarrassment. After a couple of months little walks became longer walks, I was eating healthier and I was using silcocks base daily, washing my underwear in baking soda, and had started on licodaine. The combination seemed to work and now the pain is gone. I feel no pain and I am out running three times a week now, which I never did before. Sometimes running felt easier than walking, if that makes sense, because you can do it slowly, only moving your knees and get a bounce going, whereas walking involves the vulva more.. in my case anyway. My advice is keep a positive mental attitude (even though it is impossible sometimes) and try different things to see whichever one takes, or works for you.

So basically what worked for me, and what I am still doing (mostly) is:

1) washing my underwear (cotton of course) in baking soda to avoid any allergens from detergents.
2) I use silcocks base (no prescription needed) as a soap substitute daily.
3) I also use diprobase cream (no prescription needed) if needed.
4) I wear lose clothing and comfortable footwear. Avoid Converse shoes.
5) started eating healthier/going on walks
6) try to distract your mind with something for even an hour's relief e.g a book, a game, positive mental attitude
7) I used licodaine for a while but have since stopped because I no longer feel the pain.

mac2011

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Join date : 2016-05-20

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Re: ALMOST CURED....

Post  emalita on Fri May 20, 2016 4:06 pm

Thank you for sharing this! It is very much needed to hear that women do recover.

I wish I could use ointments to protect my skin, but unfortunately my skin does not handle their lack of breathability  Sad

I wish you the best of luck getting beyond that last 1% of pain sunny

emalita

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Location : USA

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Re: ALMOST CURED....

Post  kell on Tue May 24, 2016 2:16 am

I agree! It's encouraging to hear that someone is getting better - I can't wait to get through this board more (going on vacay, so won't be able to for a while)  and just hear more ideas - I've already taken some of you guy's suggestions and am trying my new "therapies" -  I am hopeful.

kell

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Re: ALMOST CURED....

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