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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 …

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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 …

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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.

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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 …

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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 …

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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


London doctors

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London doctors

Post  mary jane on Mon Nov 18, 2013 7:34 pm

I am very pissed with doctors in London. I must of had at least 10 different people stare up my private parts. All I got is a lot of lousy medication when in fact I have clear NERVE PAIN. MY privates feel like an electric fence and I am so scared it's PUDENDAL NEURALGIA. I'd rather have vulvodynia and vestibulitis combined, not PN!
I spent a small fortune to see some gyn via BMI healthcare, but he does not deal with vulvodynia, just vulval cancers. UGH!
MY only relief is 30 mg of Amitriptyline, but I still have pain with touch, I swear it's my previously operated bartholin gland that gives me this pain and just radiates it across the other side.
I have vibrations all over my vulva after touch occurs, I can barely wash the area, I also have stabbing and pins and needles, it is clearly NOT a skin problem, doctors can't see this, I need botox and trigger point injections, not biopsies!
I have vibrations in my right buttock and random knee and lower back pain.

I walk down the street and envy EVERYONE, I bet their privates don't hurt!!!

In other order of things, I have just ordered some enzyme which claims to help inflammation, nerve pain and autoimmune illnesses, it;'s called SERRAPEPTASE. I will report if it actually does something or not.
I am still taking the optibac for my yeast infection, because it is not helping my nerve pain.
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Re: London doctors

Post  Kathy100 on Tue Nov 19, 2013 10:44 am

Mary Jane, I know what you mean - I got to the point early this year where I was sick & tired of being prodded about by various drs & them saying inane things like "oh you're rather sore down there". er yes that's why I'm here. I've spent a small fortune on private health care too. But they have to run all the other tests to rule out certain things.
Have you seen a physio who is a pelvic floor specialist yet? Reason I'm asking is that you said your pain is radiating out into your buttock & lower back. I had this too & physio is helping me a lot. Sometimes the nerve pain can be caused because your pelvic floor muscles get really tight & spasm & this then spreads out into the other muscles such as you back. The pain specialist I saw said I could have PN but if I responded well to physio then it was more likely to be muscular & to try physio first before going down the nerve block route etc.

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Re: London doctors

Post  mary jane on Tue Nov 19, 2013 11:08 am

@ Kathy you're right about the tight muscles, funny thing is I already had pretty severe vaginismus before this started, so now it's probably even worse!
I'd love to go to a physio, but my GP seems reluctant to do anything until a gyn gives some "orders".
I'm also really pissed they don't want to prescribe an extra drug like Lyrica for my pain
I am hoping to get an MRI soon though, that would be the first test I need Sad
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Re: London doctors

Post  Alana3 on Tue Nov 19, 2013 12:28 pm

To make you feel better even in thr states some doctors dont know about this and have had a million docs look until finally I found someone. I have no idea the health.care over there but I say still be your own advocate until you find the right doctor. Sad sorry this is happening.to you tho

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Re: London doctors

Post  mary jane on Tue Nov 19, 2013 12:35 pm

@ alana I've been reading a blog called http://madpeach.blogspot.co.uk/ and it sums up pretty well what docs in the Us know about this condition Sad but then again, I bet most countries have issues with specialists for this Sad
sigh

maybe in the near future they will be opneing more vulval disease clinics, there are a lot of things that can go wrong down there !!
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Re: London doctors

Post  Kathy100 on Tue Nov 19, 2013 12:44 pm

My GP was the same - once she put on ami & it was helping - she thought job done. When the pain spread she just said to double my meds (which didn't help at all). So I went to physio privately - the first one although I was told she was a pelvic pain specialist didn't help much. The one I'm seeing now though is really good. It's a long haul & you have to go through several drs, specialists etc before you find the right one.

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Re: London doctors

Post  Alana3 on Tue Nov 19, 2013 12:47 pm

Oh yeah we do have specialists I go to one but not knowing what I was dealing with at first I thought any doctor would know how to cure me. Not true. So when I finally had a doctor tell me you have vulvodynia I googled a search for doctors who specialize but it took 7 years because I had docs say I can cure.you and.of course never did... its sad Sad but I did manage to find a good doc just took a ton of time but.hopefully it won't be that long for you. Just saying it happens here too I know its annoying Sad

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Re: London doctors

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