Log in

I forgot my password

Latest topics
» 7 months since the diagnosis
Looking for a friend..... and new problems  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Looking for a friend..... and new problems  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Looking for a friend..... and new problems  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Looking for a friend..... and new problems  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Looking for a friend..... and new problems  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Looking for a friend..... and new problems  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Looking for a friend..... and new problems  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Looking for a friend..... and new problems  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Looking for a friend..... and new problems  EmptyMon Apr 08, 2019 7:54 am by Jo44

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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

Go down

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

infinitelywondering

Posts : 34
Join date : 2016-12-04

View user profile

Back to top Go down

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

VVSSufferer

Posts : 6
Join date : 2017-10-10

View user profile

Back to top Go down

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

infinitelywondering

Posts : 34
Join date : 2016-12-04

View user profile

Back to top Go down

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

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

Have you had pelvic floor physiotherapy?

Katiej

Posts : 19
Join date : 2017-11-14

View user profile

Back to top Go down

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

infinitelywondering

Posts : 34
Join date : 2016-12-04

View user profile

Back to top Go down

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

VVSSufferer

Posts : 6
Join date : 2017-10-10

View user profile

Back to top Go down

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

PainBlogger

Posts : 219
Join date : 2015-07-27

View user profile

Back to top Go down

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


Jan1959

Posts : 3
Join date : 2018-01-29

View user profile

Back to top Go down

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

sarisbaris

Posts : 69
Join date : 2014-02-17

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum