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» Hope to all my suffering ladies
My Story- my pain and my advice about possible options for pain EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
My Story- my pain and my advice about possible options for pain EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
My Story- my pain and my advice about possible options for pain EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
My Story- my pain and my advice about possible options for pain EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
My Story- my pain and my advice about possible options for pain EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My Story- my pain and my advice about possible options for pain EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My Story- my pain and my advice about possible options for pain EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My Story- my pain and my advice about possible options for pain 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!
My Story- my pain and my advice about possible options for pain EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


My Story- my pain and my advice about possible options for pain

2 posters

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My Story- my pain and my advice about possible options for pain Empty My Story- my pain and my advice about possible options for pain

Post  jules Thu Mar 25, 2010 1:12 am

hello, I am a 44 year old woman who was just diagnosed w/ generalized Vulvodynia on 12/31/09. For those who may not know...generalized Vulvodynia involves pain all over the Vulva. Like everyone else, I was treated for six months for yeast infections and bacterial infections I did not have. For me it only took 5 doctors to give me the correct diagnosis. Today I have seen a total of 8 doctors. My final diagnosis occurred in Rochester, MN at the Mayo Clinic. Lucky for me...I only live about an hour and 20 minutes from the Mayo. I have researched this disorder for months. I have been online, meeting with doctors and reading books. After, months of horrific burning pain to the point I couldn't sit, had to leave work early and used cold gel packs up to six times each day, I have some relief. The only medication I have been put on for this disorder is Neurontin (nerve blocker). My docs started me out at 600 mgs....I am now taking 3000 mgs. Like everyone else, I have tried every cream and ointment under the sun. ALL completely irritate my skin. I even tried natural oils etc.

I have decided I will not give up until I find more relief. I went to a holistic doctor not covered by insurance. He ran a battery of tests on me and found me to be deficient in some vitamins...and to have a low thyroid. I am giving myself vitamin B12 shots every three days, taking a number of vitamins and hoping. This doctor referred me to a allergist in LaCrosse, Wisc. The allergist is known all over. His focus is allergies and women's issues. I have read at least one research study that suggested there could be a connection between Vulvodynia and allergies. They just don't know. That appt. is in May. Both my holistic doctor and my Gyn recommend that I cut out alcohol, sugar and caffeine. My holistic doc doesn't want me to have sweetener either. At this point, i have not cut out these foods/drinks....I gotta have some fun.

In the meantime, I am trying conventional methods. I have two foam donuts I sit on. One is at work and one is at home. I ordered them online at a medical supplies store. I recommend them. They help avoid direct pressure on the Vulva that we normally get when we sit. Also, I asked my GYN for a referral to a pain clinic. I HIGHLY RECOMMEND YOU ALL GO TO A PAIN CLINIC TO MANAGE YOUR PAIN. This is a recommendation the vice president of the National Vulvodynia Association gives. That is the first place one should go. I went there to have a nerve block. Now, nerve blocks are iffy as to whether they can help take the pain away or not. My GYN told me it has helped some of her patients. The doctor I met w/ told me he has seen many women w/ Vulvodynia and that blocks can help. He also told me this is a very difficult disorder to treat. I had the first block one week ago today. I don't think I have noticed a difference. I have another block scheduled in one week for a nerve a little higher in the spine than the last. There is pain involved w/ the blocks..but, if it works it is worth it. I was told I will then likely have one in 3 months, six months and one year and maybe done. I also will be referred for physical therapy and my guess is part of that will be biofeedback which some of you may have read about in the book 'THE SURVIVAL GUIDE FOR VULVODYNIA" Oh, for those of you who have the Vestibules Vulvodynia alone...I would look into surgery. I am told there is a 93% success rate in relation to pain. I am not able to have the surgery as my pain is all over.

I will keep you updated on how the next block goes. Thanks for reading.... you are not alone and we can make it through this.

jules

Posts : 225
Join date : 2010-03-17

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My Story- my pain and my advice about possible options for pain Empty Re: My Story- my pain and my advice about possible options for pain

Post  Sebby (Admin) Thu Mar 25, 2010 9:27 pm

Hi and thanks for sharing your story.

I have a soft cushion that I use at work but I have thought about using a doughnut especially at home when im on the computer. I will get on Amazon and order one! When Im sitting on the sofa I tend to sit sideways so Im not putting pressure on my Vulva. Its amazing how many different ways you find to sit and then end up with a dead leg and achy back!
I was wondering about allergies and Vulvodynia as I have very senstive skin anyway. I can only use certain products on my skin and can only use non-bio washing powders. I also have to wear cotton only white knickers. I am prone to rashes and skin probelms anyway. I also suffer terribly with hayfever so am very prone to allergies.
I had not really thought much about food and drink but I have begun to try to cut down on caffine. I have had a stomach acid problem for a few months now so have to be careful what I eat anyway.
I think the pain clinic advice is very good advice, I will speak to my Gynea about that so let me know how the nerve blocker works for you.
Thank you so much for your advice it all helps and I wish you all the best in your recovery.

Sebby
xxxx
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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