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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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 …

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

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: 5

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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

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

Post  infinitelywondering on Sat Jan 06, 2018 11:38 pm

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

I've also been having some trouble with my perineum( bit between vagina and bum) it feels very swollen and sore and there's a lot of pressure. It almost feels like I've prolapsed or something. I don't know.


I'm going to see my doctor next week but whenever I go, she says- you've got a yeast infection! And gives me antibiotics that probably end up giving me a yeast infection anyway. I feel absolutely awful and frankly, don't want to be here anymore. What do I do??



Please help,

Thank you

infinitelywondering
X

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

Post  VVSSufferer on Sun Jan 07, 2018 3:23 am

Hey girl!
First of all, I'm so sorry that this is happening to you.
I think by your posts we have the same condition? (primary provoked vestibulodynia)
Is the pain you're experiencing now the same as the 'burning' on insertion? Or is it more like stretching?
I know some women have to use dilators extensively to stretch out the scar tissue and also vaginismus may be there from the trauma of surgery (Apparently the muscle spasm can produce a similar burning feeling that PVD does)
There are quite a lot of treatments I've read about that might aid your recovery
- Botox and PT: The botox stops the spasms and the PT stretches the skin and scar tissue (also gets you used to the feeling of something being 'inside'
- Nerve blocks: These are injected into the nerve causing your pain and may help, especially if your pain is neuropathic, a clinic called 'The London Pain clinic' does them in the UK.
- Instillagel: Numbing cream, can aid the PT and make the stretching easier
- CBT: Depression is the horrible baggage that seems to tag along with this condition unfortunately, I've heard it can really help people with their day to day outlook on life.
Anyway, please don't give up now, the human body is mysterious and it may take some time to figure this thing out but, almost every woman experiences some degree of relief from treatment (Trust me, I've been sending messages to women all over the internet for at least a year now haha)
Don't take shit from doctors either, if your doctor is giving you trouble, switch doctors. I'm not sure whereabouts you are but it sounds like you're in England like me? I'd suggest Wendy Reid, David Luesley, or Deborah Boyle. Those are the best Gynos in the UK from what I've heard.
You can search on the NHS website to find GPS that have high ratings in your area.
As for the swelling on your perineum, I would try and see a doctor as soon as possible, in the meantime, I'd stick to skirts and no underwear to let it breathe and hopefully calm the swelling down.

Feel free to message me privately x
And HANG in there, you are stronger than you think Smile

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

Post  infinitelywondering on Sun Jan 07, 2018 9:24 am

Thank you so much for your kind words. It honestly means a lot to me.
Funnily enough, I'm seeing David luesleys wife Gabrielle, but she's retiring soon.

I am very worried about this perineum problem because who knows what it could be.

Thank you for your advice, it's so kind and I really appreciate it

Thank you so much,

infinitelywondering xxx

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

Post  Katiej on Tue Jan 09, 2018 4:18 pm

Have you had pelvic floor physiotherapy?

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

Post  infinitelywondering on Mon Jan 15, 2018 7:18 pm

I haven't, is it worth a try? X

I don't know any good places in the UK!

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

Post  VVSSufferer on Mon Jan 15, 2018 10:00 pm

If the pain you feel is a tight aching or sore kind of pain, it's probably vaginismus which is common after surgery. Does it feel different to the vulvodynia kind of pain?
Ask your doctor to refer you to pelvic floor physiotherapy or ask your gyno.
Another option is with a clinic in the USA (Private cost, unfortunately)
They administer botox and dilate you under anaesthetic (you wake up with the largest dilator inside you) Then you go home and insert them yourself (the botox will stop your muscles from spasming). Here's the site: https://www.mazewomenshealth.com/painful-sex-vaginal-pain/vaginismus/

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

Post  PainBlogger on Thu Jan 18, 2018 5:08 pm

infinitelywondering wrote:I haven't, is it worth a try? X

I don't know any good places in the UK!

If you try a search on "women's health physiotherapy" and your town/city/county/nearby county, hopefully you'll get a few possibilities come up for physios that treat pelvic pain. Physio really helped me. Good luck and I hope you get some relief soon.

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

Post  Jan1959 on Wed Jan 31, 2018 11:49 am

Hi I’m new to this Forum.

I live in the UK and you should be able to get Physiotherapy on the NHS as there are now trained Physiotherapist in the Vulval area, working for the NHS.

I have tried it but it did not Help me, but it might Help you.

So speak to your GP and tell them you want to see a Physiotherapist. If they do not Help you see another GP. Most surgeries have more than 1 Dr and you are entitled to see any Dr at the Practice you are Regustered at as long as your Willing to go when there is a Free Appointment.

It hard to be Positive when you have Vulvadynia but Chin Up Honey, concentrate on trying to get the Pain under control, I know it’s hard but the more Stressed and upset you are the worse it will be.

Big Hug Honey


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

Post  sarisbaris on Tue Feb 13, 2018 6:17 am

I'm so so sorry! I've been there. I battled V for 15 years. I've been with one partner, my husband the whole time... so I completely know how you feel. I am cured now and it wasn't by accident. I can have crazy sex and I'm totally fine.

I followed the protocol by Anthony William. According to him vaginal burning can be caused by an unknown/currently undetectable strain of shingles or strep. I had both. I found your description interesting because he describes it in his first book titled Medical Medium in the shingles chapter.
https://www.amazon.com/Medical-Medium-Secrets-Chronic-Mystery/dp/1401948294/ref=sr_1_1?ie=UTF8&qid=1518502441&sr=8-1&keywords=medical+medium+by+anthony+william

Here's my blog with a bunch of links. I would follow the shingles protocol.
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

You are not alone. There is hope. After 15 years of burning, I am fine now. I even had a baby vaginally. Don't lose hope.

If you need a road map... please reach out.
sarisbaris40@gmail.com

Sarah

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

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