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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 …

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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 …

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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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