Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
I am new, want to share my story, it may help some of you EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I am new, want to share my story, it may help some of you EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I am new, want to share my story, it may help some of you EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I am new, want to share my story, it may help some of you EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I am new, want to share my story, it may help some of you EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I am new, want to share my story, it may help some of you EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I am new, want to share my story, it may help some of you EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I am new, want to share my story, it may help some of you 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!
I am new, want to share my story, it may help some of you 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


I am new, want to share my story, it may help some of you

3 posters

Go down

I am new, want to share my story, it may help some of you Empty I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 Mon Oct 26, 2015 4:27 am

Hi, my name is Michelle and I'm 43. My vulvar pain began nearly 2 years ago: cutting, searing, stabbing pains, unable to sit longer than 10 minutes without a donut cushion, mild pain after sex.

I went to an OB/GYN, checked for a UTI (negative), was told I had a mild prolapsed bladder, and a yeast infection. I treated myself for the yeast, but continued to have pain. I went back and asked for a complete Pap smear, and labs to check for all STD's (negative and Pap was fine). I had also had the Mirena for 4 years and requested it be removed in case that had something to do with it. The doc removed it, and after 2 of the worst periods ever, I had a new one put back in. It made no difference in the pain. That particular OB doc said he could do nothing more for me.

I scoured the Internet for practitioners who specialized in vulvodynia and chose a women's' health clinic that treated a variety of disorders. The doctor I established with there suggested pudendal neuralgia. Thus began a series of MRI's and consultations with an orthopedic specialist and a neurologist. I had some mild degeneration in my lumbar spine, all the others were normal. My blood was tested for many neurological conditions and a hormone panel was done as well. I was not in menopause and other than my pain, was fit as a fiddle. I was also tested for interstitial cystitis (neg) and a transvaginal ultrasound was normal.

My vulvodynia specialist had performed several Q tip tests and suspected possible vesibulitis along with vulvar pain and referred pain in my back. His suggested treatment was injections in my vulva to reduce pain.

The day I was to start injections, however, my husband accompanied me and asked my doctor if my constant arousal was due to this. I hadn't told the doctor about that, it was embarrassing. Then he said my problems were beyond his expertise as he determined I had persistent genital arousal disorder (PGAD) as well. He told me about Dr. Irwin Goldstein in San Diego, that he was a top expert in America and wanted me to be evaluated by him.

We live in Missouri, but with my parents' financial assistance, my husband and I flew there last week for a consultation. We met with a sex therapist first, then a pelvic floor therapist, then Dr. Goldstein, who co-authored the book 'When Sex Hurts'. After a very painful exam and vulvoscopy, I am now diagnosed with 'congenital neuroproliferative vestibulodynia'.

I am preparing to embark on hormonal treatment and correction and, after 6 months if I have little relief, I will have surgery to remove my vestibule. I have decided I can live with the PGAD, as I have since the age of 5.

My preference is surgery, but Dr. Goldstein begins the more conservative approach instead. At times, before being diagnosed, I suffered bouts of depression and even suicidal ideation. Dr. Goldstein is very skilled and compassionate, with a long list of credentials.

I have agreed to speak at a conference in the spring made up of medical professionals, to share my condition(s) to educate. It helps that I'm an RN myself. I left no stone uncovered. My advice is to seek out specialists, if your finances allow it. And to never give up.

I'm glad I found this forum and I'm sure I will have many questions as I start my treatments.

God bless!

HARDROCKMOM72

Posts : 4
Join date : 2015-10-26

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  PainBlogger Mon Oct 26, 2015 5:18 pm

Good luck to you and thanks for sharing your story. I agree with your advice to seek out specialists whenever finances allow for it and to never give up. I'm sure that there are effective treatments out there for many sufferers, but finding the right treatment can be a real marathon.

PainBlogger

Posts : 219
Join date : 2015-07-27

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK Tue Oct 27, 2015 7:33 pm

It is so good to hear a positive story. Thank you for taking the time to write it here. May I ask what hormonal treatment you are having? I have suspected pudendal nerve issues but I also can't help feeling there is a hormone issue too.... My GP has only done a blood test to check my oestrogen which was apparently fine. Anyway best of luck with your recovery! x

WaahwaahUK

Posts : 117
Join date : 2015-07-31

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 Tue Oct 27, 2015 9:54 pm

Weekly testosterone injections, a compounded estrogen/testosterone cream directly to my vagina, potentially both oral estrogen/progesterone combination in a low dose so as not to increase risk of cancer.

But for now, testosterone injections and hormone levels every 10 days for a month, to determine whether or not I need the other oral hormones. But the injections and cream always.

HARDROCKMOM72

Posts : 4
Join date : 2015-10-26

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK Wed Oct 28, 2015 9:07 am

Have they determined you have a hormone imbalance then? If so, how was it diagnosed? Excuse my ignorance, I'm often walking in the dark with this condition! Wishing you lots of luck moving forward with your treatment.

WaahwaahUK

Posts : 117
Join date : 2015-07-31

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 Thu Oct 29, 2015 8:28 pm

A random hormone panel showed everything in normal range. Except virtually zero testosterone. So I start testosterone injections today, then he's drawing panels on me every 10 days for a month to see where I am in my cycle. I typically don't have periods because I have the Mirena, and I'm not menopausal. After reviewing my labs, he will determine the dosage of hormones I need.

HARDROCKMOM72

Posts : 4
Join date : 2015-10-26

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  HARDROCKMOM72 Thu Oct 29, 2015 8:30 pm

And, ask any questions. If I can help even one gal to not have to suffer more than a year to the extent that I have, then it's a good feeling, a purpose.

HARDROCKMOM72

Posts : 4
Join date : 2015-10-26

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK Thu Oct 29, 2015 10:08 pm

Thank you. My GP only checked my oestrogen I think. He said I'm too young (I'm mid thirties) to have a hormone problem which I sort of felt fobbed off by. My gut feeling is there's more than one factor to my pain, but it does flare at certain points in my cycle. So I feel there may be a hormone issue as well as nerve issues (which I'm seeing an osteopath for). When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

WaahwaahUK

Posts : 117
Join date : 2015-07-31

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  PainBlogger Fri Oct 30, 2015 11:56 am

WaahwaahUK wrote:When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

On the subjected of perplexed GPs: my consultant told me that about 8% of women have vulvodynia. Now, I'm not sure if he meant at some point in their lifetime or that at any one time, 8% of the female population is experiencing vulval pain. Either way, that's a lot of women. GPs really shouldn't be so unknowledgeable about the condition, should they? I'm not blaming them - I know they have to know a fair bit about thousands of conditions so can't be experts in everything (that's what consultants are for) - but one would think they should encounter women with vulvodynia fairly often, and, if so, should know more than what the average GP seems to!

PainBlogger

Posts : 219
Join date : 2015-07-27

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  WaahwaahUK Fri Oct 30, 2015 7:06 pm

Yep I agree PainBlogger! Two gynaecologists so far didn't seem to have a clue either which is so disheartening. I don't understand this all too common attitude of - well you don't fit the box, I don't know what to do with you, you're not dying as far as I can tell, so off you go!! Meanwhile many of us are left in pain and researching our own way around it!

WaahwaahUK

Posts : 117
Join date : 2015-07-31

Back to top Go down

I am new, want to share my story, it may help some of you Empty Re: I am new, want to share my story, it may help some of you

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum