Vulvodynia Support
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» Hope to all my suffering ladies
DUAL DIAGNOSIS? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
DUAL DIAGNOSIS? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
DUAL DIAGNOSIS? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
DUAL DIAGNOSIS? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
DUAL DIAGNOSIS? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
DUAL DIAGNOSIS? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
DUAL DIAGNOSIS? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
DUAL DIAGNOSIS? 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!
DUAL DIAGNOSIS? 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


DUAL DIAGNOSIS?

3 posters

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DUAL DIAGNOSIS? Empty DUAL DIAGNOSIS?

Post  Sore Sat Jul 07, 2012 11:34 am

Hi guys

I've read quite a few posts on this forum to try and get an understanding of other peoples' experiences and to see if they relate to my own. I feel comforted to know I am not alone. However it is clear to me now that our experiences are all so different. My vulva pain began in March 2011 (although I do remember experiencing occassions of pain as an adolescent). I initially ignored the pain for several months, expecting the problem to 'just disapear'. However, it just got worse. I eventually went to the GP thinking they'd know what the problem was and have a straightforward cure. Boy was I wrong! So there began my path to Nowhereville. After seeing various doctors and specialists, I am still suffering from vulva pain most days of the week. I saw a Melbourne gyno at St Vincents who said I had Contact Irritant Dermatitis. When I mentioned Vulvodynia (as I'd done some research before the apt.) he said he didn't believe in that diagnosis and reccommended all the ususal advice off the net, such as white cotton dax, hypoallergic toilet paper, no soap, no hot baths, etc, which I have pretty much followed to the letter for several months to no avail. I also got reffered to the Royal Womens for a second opinion and the Dermo-Gyno said there nothing visably wrong with my vulva and diagnosed Vulvodynia. Although when I saw the specialist physio there she said I did have redness down there. So I just feel confused. I have tried various remedies, including creams, vitamins, cleaning regimes, Endep, ice packs, Ural, etc. but nothing has gotten rid of the pain for good. Sometimes something I try will help with relief, but not always. So basically my burning, stinging pain comes and goes. Somedays it won't be there, but mostly it is to some degree. It could come in the morning, day or night. The biggest trigger is after urinating. But there isn't anything on the net about pain after urinating, only during. Also heat is a problem. I tend to overheat very easily, most because I'm obese and don't exercise (I suffer from depression which is currently under control). I love to be healthy again, so I knew whether my obesity was contributing to my problems. I read somewhere that being of a healthy weight was the single best thing you can do for vulva pain. Housework or electric blanket use also doesn't help with the overheating. Can anyone else relate to my experiences? I'd be greatful to know I'm not alone.

Nicole
Sore
Sore

Posts : 3
Join date : 2012-07-07
Location : Melbourne, Australia

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Post  Sebby (Admin) Sat Jul 07, 2012 11:05 pm


Welcome to the forum

I hope you find our community supportive and helpful.

Are you on or have you tried any medication such as anticonvulsants/antidepressants specifically for the pain?

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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Post  Sore Sun Jul 08, 2012 7:09 am

Hi and thanks for the reply Sebby. Yes I'm currently on 70mg Enep (Amitriptyline), which I was told was the max dose. However, it has done nothing for me so am thinking of stopping, but will be discussing with GP this week hopefully. I've been on this medication for over 3 months and figure it would have done its job by now.

Nicole
Sore
Sore

Posts : 3
Join date : 2012-07-07
Location : Melbourne, Australia

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Post  amtali Mon Jul 09, 2012 1:13 am

70 mg may be the max dose for depression, but my doctor said the max dose is 150. That's what I went up to. I noticed a slight difference with unprovoked pain, but my provoked pain during intercourse stayed. It's definitely worth looking into though. Everyone is different.

Let me just say, I am so glad that you went and got a 2nd opinion after that ass of a doctor. Doesn't believe? What does he know?

Good Luck!

amtali

Posts : 19
Join date : 2012-05-29

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Post  Sore Mon Jul 09, 2012 6:03 am

Thanks for taking the time to reply Amtali.

The prescribing specalist did say 70mg for vulva pain was the max for this medication, although I know as you have mentioned that some doctors prescribe higher doses of medications depending on the needs of the individual they are treating. I believe she also mentioned there were other medications I could try if Endep didn't work, but my next apt. is months away due to the clinic being so busy. So I guess I'll just wait until then, as I just don't feel this is the drug for me, but I'll discuss it with her when I see her. I've made a GP apt. in the mean time about what to do in the mean time.

By the way, the gyno I mentioned in my first post was a lovely man but I just think he was 'old school', as in he was from an older generation and not into newer diagnosis such as Vulvodynia.

Take care

Sore
Sore

Posts : 3
Join date : 2012-07-07
Location : Melbourne, Australia

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Post  Sebby (Admin) Mon Jul 09, 2012 7:46 am


I am already on Sertraline for depression and anxiety so cannot go on ami. I am on Lyrica (anticonvulsant) 400mg.

I have also found relief with the unprovoked but yes provoked pain is still there...think it always will be but I manage it as I have always had to do.

Deff discuss pain killing options with your doctor...

Good luck and don't give up

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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