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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


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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