Vulvodynia Support
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» Hope to all my suffering ladies
Help me please! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Help me please! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Help me please! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Help me please! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Help me please! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Help me please! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Help me please! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Help me please! 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!
Help me please! 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


Help me please!

3 posters

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Post  fleener Fri Sep 20, 2013 8:06 pm

Hello:
After I found out I had an estrogen/progesterone fed Breast Cancer tumor last october - I was taken off my hormones. I was put on hormones to help this condition about 15 years ago when I had the same problem. Any way after being taken off H ...about a month later I started to get a pain along my left vaginal wall starting from the opening and going up 2 inches on that wall. I was in so much pain after sex I ended up as an emergency case at my GYN's. He put me on a regimen of estrace cream and gabopentin ointment - anti- anxiety meds and Oxycodeine. This regimen only helped a little bit. I also had some burning after urination. Is this kind of pain really considered Vulvadynia? I find it painful to sit and won't go near having sex.

Then I decided to go see a Female Doctor Dr. Zolnoun at UNC vulver/vaginal pain clinic in NC. She changed up my medication to an anti - seizure medication and muscle relaxers. When I went to see her I was sitting on ice... 2 - months later I flew back home to Alaska not having to sit on ice. (I have a sister there in NC I could stay with to keep costs down). The Doctor also gave me a pessary to insert vaginally each evening - she thought I had a muscular problem pinching on a nerve - (while at my sister's I used it and never bled from it, but when I got back to Alaska after using the pessary I would find blood in my panties. So I stopped using it. I also am having a total relapse of the pain, sometimes burning after urination. (i have tried not eating high oxalate or acidic foods). Two nerve blocks here from a pain doctor has not helped.  My Physical Therapist has told me she doesn't know what else to do with me.  I try massage and acupuncture and they only seem to help for one day. I am starting to feel I'm at the end of my rope. I'm trying to follow up with the Doc in NC - but I'm not sure what else she can or can't do for me. Help please...
Eli

fleener

Posts : 4
Join date : 2013-09-13

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Post  meelie Sat Sep 21, 2013 7:56 pm

He hon, you should join the Vulvodynia Society and find a PT that specializes in vulvodynia. Just any PT is not trained in what to do or what it really is. I have found one here in Ga and praise God I think she helping me. I have been to 4 apts and she did internal "massage" last week and it actually eased the burning for a few days. I have great hope at the moment. I finally figured out that it must be due to a pelvic fracture that I experienced on 4/30/2011 and I have been sitting on my right 'cheek' since then to avoid pain and it tightened and knotted up my pelvic floor muscles something awful. I pray you and all the others will find someone to help you and that my PT will be able to get my pelvic floor back to normal soon and that it stays that way. God bless.Smile 

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  fleener Sat Sep 21, 2013 9:54 pm

Thank you Meelie for your reply. I will see if there are any Vulvadynia PT's n Alaska...which I doubt. OR I may look for one where my sister lives (in Concord, NC).

fleener

Posts : 4
Join date : 2013-09-13

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Post  zarli Mon Sep 23, 2013 11:07 am

keep trying everything you can, you will find something that helps you. Please know you are not alone and when you are feeling bad think of all of us here on this forum, that's what I do. Every one is different and it can take time to find the thing that will help you, keep positive nothing stays the same.

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  fleener Mon Sep 23, 2013 6:49 pm

I am trying to do everything.... -a GYN I went to in North Carolina suggested Gabopenton. Taking it by mouth - so we'll see. The bummer is - I see my friends and sisters are working at great jobs and it is snowing in Alaska - so I am very depressed about my situation. I was a TV Producer - but because of my health - not sure I'm capable of doing that career anymore....just feeling very bummed out. Guess I need to find something that will make me happy.

Thank you for your response!

fleener

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Post  meelie Tue Sep 24, 2013 12:43 am

I was taking Neurontin like your gyn gave you but because mine is due to pelvic floor dysfunction the burning usually went away at night when I was sleeping, laying down without any pressure on my pelvic floor. I finally realized that even with the medicine nothing really changed because even with the Neurontin the burning would start again after being up for a little while the next morning.
I only took it at night and then when I started taking it morning and night it started messing with my brain and making me feel weird like spacey or something. So I quit taking it and nothing changed. Burning went away at night and returned the next morning.
So I guess I was taking it for nothing. But, I do hope it helps you. And don't give up. My PT says she had someone come from way over from the coast of Ga that was taking it and it helped her until she had a flare up and that sent her to Laurie.
I surely pray that you can find a PT to help you. Did you join the Vulvodynia Society? I haven't renewed my membership since I have found hope but if I can get on the site I will see if there are an PTs in Alaska.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  meelie Tue Sep 24, 2013 12:55 am

Oh crap, I just logged on and it says it will send on request medical professionals for your area. I have already got my list for the Georgia area so it looks like you will have to join unless there is someone else on the post that might be from Alaska. When you join you have to tell them where you live. Anybody out there that might be from Alaska or know someone who is a member that lives there?

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  fleener Tue Sep 24, 2013 3:26 am

I haven't started the Neurontin yet...so we will see. I do have a PT here. She comes highly rated by a friend who use to have Lavater Syndrome. PT use to actually go inside my V and press on the muscle she thought was spasming out. The first time she did that I felt relieved of pain the next morning. But the next two times it felt more like she was aggravating the problem. So we just do trigger point therapy and gentler exercises at home - she is also looking at getting me a biofeedback machine to use at home. Thank you so much for all of the input!

fleener

Posts : 4
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