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» 7 months since the diagnosis
New and desperate for advice EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New and desperate for advice EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New and desperate for advice EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New and desperate for advice 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!
New and desperate for advice EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New and desperate for advice EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New and desperate for advice EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New and desperate for advice EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
New and desperate for advice 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


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Post  srbry on Sat Mar 03, 2018 2:37 pm

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I was embarrassed and figured it would just take a wee bit of time to have pain free sex, i figured it would take my body a bit of time to get used to it. After that I had a boyfriend at university and was with him for 2.5 years. Sex still hurt but it wasn't every single time at the same time. Sometimes it would be sore from a finger, and he couldn't even penetrate me, sometimes part way through penetration it would begin to really hurt, sometimes (very very very rarely) it would be ok but the pain would come on after. The pain is at the entrance to my vagina and it burns. It's near the bottom (just above the perineum) and the pain feels like I'm being burned or sliced with razor blades.

When I was at uni I went to the dr about 12 different occasions, had loads of tests done for STIs, yeast infections etc and they always came back negative. I was essentially shooed out of the door and told it was all in my head. My boyfriend was understanding and lovely but he was the only person who knew about this and it sometimes took a strain on our relationship. After me and him broke up I confided in my mum and told her the problem. She told to me to demand a referral to a gyno which i did and i'm currently being bounced around the NHS. I see a different dr each time and therefore have to have a new examination each time. Several drs have made me cry from being so insensitive (always female drs which shocked me) and last time I was at hospital in January a dr literally shrugged at me. I'm being referred to a neuro gyno and have an upcoming appt in April. I've had so many scans and nothing can be found for cysts / endometriosis etc. I've spent months with a psychosexual counsellor, I've had a few sessions with an acupuncturist and now I'm seeing a hypnotherapist (I've only had one session so I'll have to wait and see how that goes).

Emotionally I'm broken down. I worry about getting involved with any man because of this huge issue and my self confidence is very low. Yes I know that if a man doesn't accept it and deal with it properly he's not worth it - but that doesn't really help me. I ended up asking my best friend for a favour almost 2 years ago - I needed to have sex and he was single so could he help me. There was no way for me to track any progress unless I was sexually active so he's been a great help to me and is incredibly supportive. He recently sent me an article on vestibulodynia and said it sounds very similar to what I have. I've printed loads of info about it and will take it to my next appt with the dr as I think it's sometimes more beneficial to take your own ideas with you - from past experience. The pain isn't all around the "clock face" it's just at 5, 6, 7. Where it really just feels like I'm too tight. I've tried dilators in the past but found the whole process incredibly painful and anxiety provoking.

Does anyone have any idea if this could be vestibulodynia? Even though the pain is only nearer the perineum and it doesn't hurt to the same degree each time?? And does anyone have any hints and tips for how to make the process of using a dilator less traumatic and more useful? I find that drs haven't been giving me much guidance on this kind of thing. I just read a post below and have bought the Amy Stein book "Heal pelvic pain" as it was recommended, and will look in to doing more yoga, but if anyone has any more advice please please please please please help. I'm going a bit crazy. 8 years is a long time and is really effecting my mental health. Another issue with my life is I don't always stay in the same place. Last year I lived in Africa (with no access to a gyno) so my hunt for a cure was put on hold for a year. In june I'm moving to Vancouver (definitely more medical help available in Canada but also pretty expensive for a Brit on a budget). I know this is a long shot but if any Canadians happen to read this and could give me any advice on help to get while I'm out there that would be amazing.

I've read a lot of the stories below and I feel for everyone. I know exactly what it's like and just want it to be over. Thanks for taking the time to read this xxxx

srbry

Posts : 14
Join date : 2018-03-03

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Post  fairlight10 on Sun Mar 04, 2018 8:55 am

Hi srby It sounds as if you have vulvar vestibulitis. This can be primary meaning you can be pre disposed from birth. Did you have problems using tampons when you first used them? I have secondary vulvar vestibulitis. I had no problems in my vulvar until l was 57 years old. I still do not know what event triggered mine.could have been thrush, menopause, uti,urethral dialation. When I finally got my diagnosis and did my research. Canada was way in front of researching this condition. It was said they even had adverts on the subject of vulvodynia. So it looks as if their doctors are a lot more open to this problem.l am sure I got this info from this site. I have been on Nortriptyline for almost 6 years. It keeps me comfortable. I can get on living almost trouble free from this condition. Some fruits cause my urine to be too acidic so that can cause symptoms to start up. Also stress is another trigger. Getting hot in summer is also a trigger. You learn to manage your triggers and avoid them best you can. I am glad you have confided in mum and found this forum. Good luck with your appointment in April. Do not accept anyone telling you it is all in the mind. I believe this is said when they are ignorant of this condition.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  srbry on Sun Mar 04, 2018 12:23 pm

Yes I did have problems using tampons but it was such a long time ago that my period started I can't quite remember. I know that I had trouble even getting a tampon in and settled for using pads at first. But I can't remember whether I experienced pain with it or whether it was just difficult to insert them. I moved on from pads to tampons after about a year when I learnt to successfully insert and after that I moved on to the mooncup. Insertion / removal was quite sore (If I were to press on the opening of my vagina near the perineum now there would be a sharp pain). On friday I had my mirena coil removed and reinserted (an awful process because the smallest speculum still caused me a massive amount of pain).

Is Nortriptyline an antidepressant? Can I ask how that helps you? I don't really understand all the different types of treatment / pain control. Was your pain there continuously or only during intercourse?

Thank you for your help it feels like such a relief to even get a reply and know there are other people who are experiencing the exact same thing xxx

srbry

Posts : 14
Join date : 2018-03-03

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Post  fairlight10 on Sun Mar 04, 2018 2:13 pm

Yes it is an antidepressant but used in low doses it can help with nerve pain. It slowly.calms the nerves down in the affected area. I am on 20mgs every night. There are also epilepsy drugs that can work in the same way. My pain was sometimes continuous.It would be worse at night burning and stabbing pains. This is neuropathic pain. Had many trips to see the doctor and they were useless. Paid for private consultation with gynaecologist who gave me a diagnosis of vulvodynia which translated means pain in the vulva. Put on the low dose antidepressants and paid for acupuncture privately put me on the road to some normality. It took 4 months to be able to go back to work. Occasional flare ups and learning what triggers them. Read the posts on this forum. They can be very informative. Different things have helped other people. Good luck.

fairlight10

Posts : 72
Join date : 2016-04-17

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