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» 7 months since the diagnosis
Confused and wondering how I got here. Can you offer some perspective? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Confused and wondering how I got here. Can you offer some perspective? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Confused and wondering how I got here. Can you offer some perspective? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Confused and wondering how I got here. Can you offer some perspective? 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!
Confused and wondering how I got here. Can you offer some perspective? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Confused and wondering how I got here. Can you offer some perspective? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Confused and wondering how I got here. Can you offer some perspective? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Confused and wondering how I got here. Can you offer some perspective? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Confused and wondering how I got here. Can you offer some perspective? 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


Confused and wondering how I got here. Can you offer some perspective?

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Confused and wondering how I got here. Can you offer some perspective? Empty Confused and wondering how I got here. Can you offer some perspective?

Post  overwhelmed on Fri Oct 13, 2017 2:01 am

Hello - I am a 22 y/o female who is newly diagnosed. A quick background on my story to give some context - my life changed as it knew it 7 months ago. I started having an itch, so I went to planned parenthood and was told it was a yeast infection. The regular yeast infection pill cleared it up and I was symptom free for one month. Then the itching returned, and was accompanied by burning. Nothing looked wrong on the outside except some redness. I went to the gynecologist and was tested for every STD, all negative. She sent out a culture and it was also negative for yeast & BV - but doctors had been prescribing me yeast cream because they still thought it was yeast. Got a biopsy - nothing came back but some slight inflammation. This whole time I'm still getting wet preps done, then I get a diagnosis of DIV. Use the cream ad it doesn't work. Now I develop shooting pain that comes in random attacks. Get all new blood tests again six months after this started, still negative for STDs. Finally my doctor suggests it's neurological and puts me on amitriptyline - my symptoms have dramatically improved.

I finally get into the Dartmouth Hitchcock Vulvar clinic - have any of you had positive experiences with treatment there? - and the doctor officially diagnoses me with vulvodynia. I will increase to 50 mg of amitriptyline and begin physical therapy in December.

So, I have a few questions about all of this new information.

  • Does anyone else experience itching as a primary symptom? I guess it's more of a burst of some type of feeling, like pinching, not always itching, and has all but gone away since I've been on amitriptyline for almost two months.


  • How did I get this? Was it brought on by the yeast infection? I had never had a yeast infection before in my life. My mom and aunt both went through similar episodes in their life, but was told by their doctors that it was yeast. However, their problems persisted just like mine, and I was told mine was yeast for months too.


  • The doctor at DH said this could have been brought on by all of the incorrect medicines I was given. Has this happened to anyone else?


  • For the first year of my life that I had sex, it was extremely painful. Then, things seemed to be okay for a year or two. Since my troubles started, I have an aching type of feeling after sex sometimes, like a bad menstrual cramp.


  • I have always had horribly difficult periods my entire life. Heavy bleeding for up to ten days, extremely painful cramps. Now that my troubles have started, I get random cramp like pains when I'm not on or even supposed to be getting my period soon. Some of the shooting pain feels like it's around my ovaries, but I got an ultrasound at DH and there is no sign of ovarian cysts or endometriosis. Does anyone experience period pain like this? Can it be related to vulvodynia?


  • Lastly, I struggle with body image issues. So relieved that the amitriptyline has improved things, but I have gained ten pounds in two months - I go to the gym and run daily. Is there a substitute for amitriptyline that can counteract weight gain? Or anything I can do while on elavil to STOP wait gain? Not about to stop amitriptyline because of weight gain, but I just don't want to gain anymore than this.


I guess I have a lot of questions but not a lot of people to go to. Hoping to identify with someone here, and do more reading on other people's stories. It's been an extremely long road to get here. Looking for any feedback or guidance you would be kind enough to offer.


overwhelmed

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Post  fairlight10 on Fri Oct 13, 2017 9:07 pm

Glad amitriptyline is working for you.I am on a similar drug. The shooting pains you are experiencing are nerves firing . I don't have these.now or burning sensation. I can have still have low level tingling or stinging. I believe this can be caused by my urine being acidic. Too much coffee can cause this. I was also told it was just yeast. Kept being prescribed creams and pessary. They just made it burn even more. Antibiotics for uti. I thought I was going mad. Visited gynaecologist who diagnosed vulvar vestibulitis. He put me on Nortriptyline 20 mgs. Had acupuncture which was helpful. That was over 5 years ago. Have tried to reduce dose to 10 mgs but start to feel uncomfortable. So, keep taking the tablets in low doses. I have read they only work at a low dose. I have not experienced any itching but at the beginning the pain felt like it was up and inside me.

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Post  Angelmegs on Sat Oct 14, 2017 5:29 pm

I have a similar story. Terrible period my whole life but I’m still waiting to see if I have endometriosis. I was overprescribed yeast infection meds and the problem escalated. Have you been on birth control? I think that my problems got much worse once coming off of it after being on it for 5 years. Btw I’m 20 years old. And my pain used to be mostly itching but not it’s like a throbbing hot feeling with an itch

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