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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


My Poor mum

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My Poor mum

Post  Paula on Mon Oct 11, 2010 8:31 pm

Hi everyone,
Looking for any help and advice for my 70 year old mum, who has been diagnosed with vulvodynia 2 years ago, she has been put on huge amounts of meds and has seen a gyna, pain clinic but nothing is giving her any relief at all. The strangest thing is that this started with no warning, no uti, no thrush nothing, when i read about others and this problem, uti's and thrush are normally spoken of.

The worst problem she has is sitting down, she cant sit to eat her dinner or to watch tv or when out with friends has to keep standing up as she is so uncomfortable, she also has copd and gets very tired, so all this standing and pain is ruining her life, it is breaking my heart to see her cry and says she does not feel she can spend the rest of her life like this,i just want to find somethin that might help her, has anyone got anymore ideas, doctor is now thinking perhaps to try injection therapy in london? has anyone tried this, or tens machine or acupunture???
Forever hopeful
Paula

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Re: My Poor mum

Post  Sarah001 on Tue Oct 12, 2010 12:33 pm

Hi Paula, a couple of things spring to mind. With your Mum being post menopausal there's a chance it's hormonal. If she's not on HRT it might be an idea to try it and if she is already on it perhaps it needs changing? As she's 70 if there's anything to see on the skin it should be examined by a specialist dermatologist, lichen sclerosis is common in older women and if there's any suspicious lesions they should be biopsied to rule out cancer (not common but if there are any it should be checked in a woman your Mum's age). The last thing is as we get older our muscles get weaker so she may have some pelvic floor issues which a women's health physio will be able to test for. I hope some of that is of help and good luck.
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Re: My Poor mum

Post  tweety on Wed Oct 13, 2010 11:54 am

Hi Paula,

What kind of symptoms is she experiencing?

For short term relief have you got her sitting on a donut to help relieve stress on her body? I also agree with Sarah's suggestions too.

Let us know... we'll help figure out something...

*hugz*

Sue


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Re: My Poor mum

Post  Sebby (Admin) on Thu Oct 14, 2010 7:25 pm


Hi Paula, what meds is she on and what has she tried so far.

Also what is the injection therapy I am due for a nerve block injection soon and another lady who's husband is on here is trying botox injections.

The foam doughnut idea is a great idea..had a quick look on Amazon and this one looks good

http://www.amazon.co.uk/CUSHION-Moulded-Excellent-OPERATIVE-Relief/dp/B001RBZ54C

Sum things that I have found that have helped are:

Not sitting in a bath at all and only showering. I do not use any soaps down there at all only cool water
Wearing only white cotton knickers, no tights no man made fabrics
Wash the knickers on 90 degrees to kill bacteria and do not use any washing powder at all
wear only skirts or leggings as these are soft and do not rub vulval area
Im currently using a TSE/TENs machine..its early days yet but am finding it good...have a flare up at the moment so am seeing in the next few days if the machine will take off the flare up..this is the one im using

http://www.acticare.com/

It is more expensive than a normal tens but it is suppossed to be better..maybe try a cheaper tens for a bit to see if this kind of treatment is beneficial as Ive only just started using it

I do not wear knickers indoors only a long skirt
If pain is bad I take some co-codermol temperarily 15mg - this is cos at present I am already on meds for panic attacks and the anticonvulsants/amitriptalyne may not mix well with these. (sorry cant spell the medicine names well!)

I would also suggest a visit to a womens physical therapist

I do hope your mum can find some relief

Sebby
xx



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Re: My Poor mum

Post  Paula on Thu Oct 14, 2010 9:31 pm

Hi
Thanks for taking the time to answer, she is on gabapentin 800mg a day, amitriptyline 30mg at night co-codamol dont touch the pain tried tramadol, pregabalin no good have bought her a donought to sit on
, i think she should try acupuncture, anything would be good ?????



Paula x

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Re: My Poor mum

Post  jules on Fri Oct 15, 2010 3:18 am

Paula, i know your mom is older so, i don't know how high of a dose they will go on the gabepentin. it took me 3000 mgs for pain relief. it did help, but 900 mgs was not nearly enough for me. I am trying lyrica as well..on 300 mgs..the increase to 100 mgs's gave me relief, but not so much anymore. the donut at all times is a must. she is sitting on her pelvic muscles rather than her pelvic bones..the muscles are wrapped in nerves. besides the biopsy etc.. (i'm guessing they check on all of that if they gave her the Vulvodynia diagnosis? but, you never know). Physical therapy has been helpful for some women. i am seeing a p.t. right now who measured my pelvic floor resting rates, checked my walls etc. (btw..my walls and resting rates are very good) we are working on toning external muscles and i got a prescription for a tens unit (never tried one). so..insurance will pay for one and i will bring it home once the p.t. shows me how to use it. cold gel packs kept in the refrigerator can give instant relief for burning pain. I feel you..i would hate for my mom to feel pain like this.(yes i'm from the U.S. we don't say mum here :-) ) good luck.

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Re: My Poor mum

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