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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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


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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