Vulvodynia Support
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» Hope to all my suffering ladies
I am so confused. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I am so confused. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I am so confused. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I am so confused. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I am so confused. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I am so confused. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I am so confused. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I am so confused. 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 so confused. 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 so confused.

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I am so confused. Empty I am so confused.

Post  Leslieg Tue Oct 22, 2013 2:37 pm

I just wrote a very long entry here and somehow it did not save.  Ugh.......I will try again.  This is an abbreviated timeline.
-April 2008- gave birth via C-section following extensive back labor.
-June 2008- vulvar symptoms began. Doctor said BV.....treated with antibiotics....2 rounds and diflucan proactively.  no relief.  Doctors said hormonal irritation form breast feeding.  Continued to feel irritated and raw.
-July 2009.....went back to work and got a bowel infection (c-diff) caused by overuse of antibiotics.  Treatment for this is ironically more antibiotics.  It took 5 months to go away.  Horrible experience, but funny enough I do not remember having V symptoms during that time.  Stopped antibiotics in December 2008.
-February 2009 had sex with husband.....developed stubborn yeast infection.  OTC treatment didn't work.....given boric acid suppositories.....yeast gone.....V symptoms persisted.  
-July 2009 found vulvar specialist......biopsy done 1st visit revealing chronic inflammation.  Nurse practitioner eluded to lichen planus or lichen sclerosus.  So my desperate mind went with that.
-used prescribed cortisone ointments with little relief for a while.
                (-june 2010 baby #2 via C-section with thin thin uterus wall.)
-I was trying to cure lichen and with research spent about $1000 on homeopathy.  I did this for over a year and had a few months of glorious relief so I thought it was working.  Then they switched medicines and V symptoms of pin pricks, irritation an rawness came back. gave it about 6 more months but didn't work again.
- I started using pure aloe ( a valid treatment for lichen planus per research).  Ongoing appointments at vulvar clinic offered just changing strengths of cortisone ointments.
-Aloe started to cause weird itchy bumps after a few months........I thought this was just progressing lichen.  I went to clinic ...... this prompted referral to vulvar dermatologist within clinic.
-june 2013......Vulvar dermatologist tells me I do not have lichen.  Feel good about that but with a bit of WTF? feeling.  I am recommeded to get allergy testing.
-October 2013 allergy testing reveals significant sensitivity to cocamidopropyl betaine.  It's in my body soap and shampoo.  yeah!!!  I thought I had answer.  I got some but not complete relief from changing products.
-end of October 2013 back to vulvar dermatologist.  they see scarring from tearing from intercourse.  
-throughout 2013 I have had intermittant right side sore groin, numb feelings, kind of numb right labia and tenderness in groin area difficult to pinpoint.  This comes goes and is mostly mild.
-Doctor recommends drug doxipen (tryicyclic and PT.
-So scared to take drug. so scared.  I don't want to.
-willing to go to PT......will this hurt?

What is the relation to vulvar skin and pelvic floor????   I struggle to understand.
anyone try doxipen?  Will I gain weight..... 10mg-30 mg.

Again, my first entry had more detail and feeling.....this is much abbreviated......I guess better for you lovely ladies.  Any insight, comments or advice in relation to my story is greatly appreciated. thanks!!!
Hoping for healing for us all.
Leslie

Leslieg

Posts : 86
Join date : 2013-08-09

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Post  Sarah001 Tue Oct 22, 2013 4:38 pm

Hi Leslie, a very simplified explanation of the pelvic floor and vulvar skin connection is the tight muscles do not allow proper blood flow to the vulvar and something that caused an irritation cannot heal without correct blood flow. That's a very simplified version and if you need more detail look up Howard Glazer online and read his explanation. I'm tempted to think tight muscles and trigger points with you, the way it started screams of abdominal and likely hip flexor trigger points so I think PT is a must. Sessions may increase symptoms temporarily at the beginning but it really depends what they find. i was told I had Lichen Planus by my GP at the time and a few months later a vulvar dermatologist immediately said I didn't have it, I think doctors grasp at anything they can give treatment for and of course the pelvic floor and trigger points aren't what doctors understand so it's quite common for them to get it wrong! I can't answer the drug question I'm afraid because I haven't taken that one but I gained 28 lbs from the drugs I was prescribed however I have slowly got rid of half of those and am working on the rest so even if you gain weight you can get rid of it without stopping medication. Perhaps someone else will know more detail to give you. But definitely give PT a chance, alot of ladies on here have had good results with it. Good luck and keep us posted.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Leslieg Thu Oct 24, 2013 2:00 am

Thank you for your reply Sarah! I'm trying to stay positive! I'll keep you posted......

Leslieg

Posts : 86
Join date : 2013-08-09

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