Vulvodynia Support
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» Hope to all my suffering ladies
Confused and Looking for Answers!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Confused and Looking for Answers!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Confused and Looking for Answers!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Confused and Looking for Answers!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Confused and Looking for Answers!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Confused and Looking for Answers!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Confused and Looking for Answers!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Confused and Looking for Answers!! 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!
Confused and Looking for Answers!! 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


Confused and Looking for Answers!!

2 posters

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Confused and Looking for Answers!! Empty Confused and Looking for Answers!!

Post  Kate1981 Tue Sep 11, 2012 4:34 pm

Hi everyone

I was diagnosed with vulvadynia (vestibulodynia) 6 weeks ago and im finding it all very difficult to deal with and understand. When I first had sex I was very tight and it hurt which I imagine it does for everyone. As time went on I had normal painfree sex with the same partner for the next 5 years. During my second relationship of 10 years I noticed I got occasional burning during sex and an uncomfortable feeling for the rest of the day but by the next day I was fine. Sometimes it hurt upon initial penetration but then I was ok. Ive never been able to use tampons so I assumed I was just small.

I started seeing a new partner a year ago and this is when the intense pain and burning started. The first time we had sex after 3 days i had an intense burning sensation to the right hand side of my vulva and into my vagina. Initially I thought STD and went to the sexual health clinic all tests came back clear said it was a uti and gave me antibiotics and within 9 days the burning disappeared. For the next 6 months I was fine had amazing pain free sex. I then had a routine smear test which caused pain in my urethea causing another uti so was back on antibiotics. This cleared and I was fine once again. 1 month later we were away on holiday and had lots of sex. The last day of the holiday the burning started once again and it was also hurting to urinate so thought it was another uti infection and was given another lot of antibiotics.

I was then fine again up until 6 weeks ago when the burning started again and this time it hasnt stopped. It has been so intense and I also have a stabbing type pain up into my vagina with a kind of throbbing sensation. I havnt been able to work or leave the house. I went back to the sexual health clinic and was tested once more this time they tested for herpes as well through blood all tests came back clear. I have no marks or anything to see just maybe a slight redness just inside. The doctor at the sexual health clinic said straight away it was vestibulodynia. He performed the qtip test and I jumped every time he touched the area just inside the vagina.

I have read and read about this condition and I am totally devastated at the thought I may have this forever. I have been put on amitripline initially on 10mg but now taking 30mg a day. The pain has massively improved however the burning still remains but not so intense. I am so confused do symtoms come and go? Was the slight burning and uncomfortable feeling I sometimes had with sex be a sign that ive always had it? Im so confused!!!! Sex doesnt usually cause me a lot of pain or discomfort its just these 3 occasions its caused this intense burning and pain a few days later. Is this usual for v? The doctor who diagnosed me also said my vagina was very small so could this be the reason for the burning? At the moment sex isnt even a possibility but I am scared that I will never be able to do it again because of what it may cause afterwards.

I have ordered some dilators to see if that helps. Ive also been referred to a vulval specialist clinic where hopefully they may give me some physio. I also suffer with IBS mainly constipation and im wonderring if this is related. I also have a lower back pain and restless legs but only in my right side the same as my vulval pain.

Any help or advice would be massively appreciated as im going out of my mind.

Wishing all of you suffers some painfree days and positive treatments

Kate1981

Posts : 88
Join date : 2012-08-17
Location : Manchester, UK

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Confused and Looking for Answers!! Empty Re: Confused and Looking for Answers!!

Post  scrumptuous Wed Sep 12, 2012 7:27 pm

Dear Kate,

I have only just joined the vulvodynia support group, this evening, after coming across the site. I am 55 years young and have lived with vulvodynia for 21 years. Can I immediately reassure you, that yes you will be able to accept living with this condition and manage to continue with your life. Following a gynae operation 21 years ago, I developed severe pain and burning. As mentioned by previous members, I was constantly told there was nothing wrong, but I knew that there was. I like you attended the GUM clinic (I have been with my husband since I was 15) thinking it may be herpes, as you try to search for any answer. All my swabs and tests always came back negative. Years ago, very little was mentioned about this condition and I spent the next ten years having injections into the area (anti-inflammatory, which were very painful) and many operations removing skin from the vulval area. I actually had a right sided vulval skin graft at St. Mary's Manchester, because this was the only treatment offered to me. It was'nt until many years later, that a Consultant at Hope hospital actually told me that cutting away the area only temporarily relieves the condition (after weeks of recovery from the surgery), as the nerve endings re-grow and so the condition returns. It would appear to target certain types of women. I was also diagnosed with fibromyalgia, IBS, litchen planus, thyroid antiboidies and am definately a person that worries. When my stress levels rise, I definately suffer most. This aside, I have been married for 36 years to a very understanding husband. As like many of the other women have mentioned, it can have a massive impact on your status, as a woman and your sex life, but if you cannot cope with full intercourse, then there are many other ways to be intimate and still feel close and loving. I myself still needed to fully make love and would consentrate on the nice feelings at the time. Yes, I knew that the following days, I would be extremely uncommfortable, but I also knew that this would then return to a level, which was acceptable and that is how I coped. You will find your own coping strategies. May I say that over the years, I definately have more better days and manage to live an active 'normal' life. I would advise you to only shower and not bath, as I never use soap, talc or anything else in the area. I also stopped using tampons and even found that certain tiolet papers were better than others (I'm not sure if there are bleaching agents in some of them). I gave over using any sort of creams, as I have found that my own body eventually returns to a copable level. With any diagnosis, there is always anxiety and fear of loss of control and in the early years, I did question why me?, but now I am aware that I am not the only one, there are many other women like us. Never feel that you are on your own and believe that the situation will greatly improve, it just takes a little time.

Helen

scrumptuous

Posts : 5
Join date : 2012-09-12

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