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» 7 months since the diagnosis
Long Time No Talk... What's been going on with my V pain the past few years... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Long Time No Talk... What's been going on with my V pain the past few years... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Long Time No Talk... What's been going on with my V pain the past few years... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Long Time No Talk... What's been going on with my V pain the past few years... 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!
Long Time No Talk... What's been going on with my V pain the past few years... EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Long Time No Talk... What's been going on with my V pain the past few years... EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Long Time No Talk... What's been going on with my V pain the past few years... EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Long Time No Talk... What's been going on with my V pain the past few years... EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Long Time No Talk... What's been going on with my V pain the past few years... 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


Long Time No Talk... What's been going on with my V pain the past few years...

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Post  jen007 on Fri Feb 22, 2019 3:34 am

Hi All,

It's been quite a long time since I've posted on here. Not sure if any of my old online friends are still here. I figured I'd come back since this was the best support group I was ever able to find on V. To summarize my V journey, I had been suffering with Vulvodynia since I was 14 years old. After seeing many doctors & taking many prescriptions I was finally formally diagnosed with PVD - Provoked Vestibulodynia. In 2012 I had a full vestibulectomy which completely changed my life. After about 6-8 months of healing I was finally able to live a pain free life. I was able to lose my virginity & have sex as much as I wanted... But... there is always a BUT... After 4 years of a V free life I discovered a new pain down there. It was so strange. I went to bed feeling "normal" and the next day I had this awful sharp, burning pain. It was non stop... provoked & unprovoked pain out of nowhere. I thought I must have been having an allergic reaction to something or maybe I had some sort of infection. I only wish that one of those were true. I went back to the same doctors who helped diagnose me, properly. All were stumped. No one could figure out what was wrong. I tried all of the same medications all over again. Nothing worked. Now, 3 years later, I'm still feeling pain. Over the years it has lessened in frequency, but it's still there. I feel it pretty much every day. It's also changed a bit as well. To give you a run down of my symptom journey:

*First year - Started off sharp, burning and sometimes itching pain - all centered around my urethra
*Second year - Pain is still sharp, but slightly dulled. Comes and goes in cycles. Still centered around my urethra
*Third & current year - Pain is much duller & comes/ goes. Always feel something, but it's not always painful... just an awareness that something isn't quite right. Pain comes in cycles. Pain is still mostly centered around my urethra, but has slowly moved to my clitoris this past year. My clit doesn't hurt, but it almost always feels itchy... but not infection itchy. It's hard to explain, but it's almost always irritated.

BTW I usually always feel pain with sex, but sex isn't impossible. I'm still able to have sex, but it's usually always painful, especially after. I'm lucky to have a loving and caring partner who tries to understand what I'm going thru. Lately, I've just tried to forget about it. I reached out to the Mayo Clinic a few months back, but they denied me as a patient since I've done pretty much everything they would have tried. At this point I'm about ready to give up, but I really wanted to share my story with you all in hopes someone else has gone thru something similar who was able to find relief. I used to be so happy that this chapter had been closed in my life after my successful Vestibulectomy, but now I feel somewhat hopeless.

Sending love & healing energy to my strong ladies out there <3

jen007

Posts : 152
Join date : 2012-11-05
Age : 27
Location : U.S.A

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Post  fairlight10 on Fri Feb 22, 2019 7:20 pm

Have you tried a low oxalate diet? Vulvodynia affects the urethera. Google low oxalate foods and see if it helps.l remember eating too much pineapple and felt very uncomfortable some hours later.

fairlight10

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Post  mary jane on Mon Mar 11, 2019 9:15 pm

jen007 wrote:Hi All,

It's been quite a long time since I've posted on here. Not sure if any of my old online friends are still here. I figured I'd come back since this was the best support group I was ever able to find on V. To summarize my V journey, I had been suffering with Vulvodynia since I was 14 years old. After seeing many doctors & taking many prescriptions I was finally formally diagnosed with PVD - Provoked Vestibulodynia. In 2012 I had a full vestibulectomy which completely changed my life. After about 6-8 months of healing I was finally able to live a pain free life. I was able to lose my virginity & have sex as much as I wanted... But... there is always a BUT... After 4 years of a V free life I discovered a new pain down there. It was so strange. I went to bed feeling "normal" and the next day I had this awful sharp, burning pain. It was non stop... provoked & unprovoked pain out of nowhere. I thought I must have been having an allergic reaction to something or maybe I had some sort of infection. I only wish that one of those were true. I went back to the same doctors who helped diagnose me, properly. All were stumped. No one could figure out what was wrong. I tried all of the same medications all over again. Nothing worked. Now, 3 years later, I'm still feeling pain. Over the years it has lessened in frequency, but it's still there. I feel it pretty much every day. It's also changed a bit as well. To give you a run down of my symptom journey:

*First year - Started off sharp, burning and sometimes itching pain - all centered around my urethra
*Second year - Pain is still sharp, but slightly dulled. Comes and goes in cycles. Still centered around my urethra
*Third & current year - Pain is much duller & comes/ goes. Always feel something, but it's not always painful... just an awareness that something isn't quite right. Pain comes in cycles. Pain is still mostly centered around my urethra, but has slowly moved to my clitoris this past year. My clit doesn't hurt, but it almost always feels itchy... but not infection itchy. It's hard to explain, but it's almost always irritated.

BTW I usually always feel pain with sex, but sex isn't impossible. I'm still able to have sex, but it's usually always painful, especially after.  I'm lucky to have a loving and caring partner who tries to understand what I'm going thru. Lately, I've just tried to forget about it. I reached out to the Mayo Clinic a few months back, but they denied me as a patient since I've done pretty much everything they would have tried. At this point I'm about ready to give up, but I really wanted to share my story with you all in hopes someone else has gone thru something similar who was able to find relief. I used to be so happy that this chapter had been closed in my life after my successful Vestibulectomy, but now I feel somewhat hopeless.

Sending love & healing energy to my strong ladies out there <3

I am so sorry to hear your pain has returned. I have also had remission and relapse, several times.

Are you sure 100% you have tried everything for your neuropathy though ?

1. Pelvic physiotherapy and manual desensitization
2. Nerve blocks (of the genitofemoral nerve for example, I don't recommend pudendal nerve blocks however)
2. Acupuncture
3. Different medication for nerve pain, for example two anti-epilepsy meds taken together, clonidine (it is also used for nerve pain), topical lidocaine 5% or gabapentin cream if you live in US
4. Ketamine infusions (they may not want to treat you as you don't have CRPS but they can work)
5. TMS therapy (basically in case it is psychosomatic). some people on TMS wiki have had V too
6. Mindfulness (I now use Binaural beats - they sort of work)
7. Nerve pain supplements like Alpha Lipoic acid and B12 (those with diabetic neuropathy take them) ?


Please don't give up, also have you tried LYRICA ? It has helped those with interstitial cystitis and vulvodynia
mary jane
mary jane

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