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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

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

Sat Jan 06, 2018 11:38 pm by infinitelywondering

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



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


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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