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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: 1

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: 8

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

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


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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