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

» Please tell me this can get better
Emotional mess... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Emotional mess... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

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

» 7 months since the diagnosis
Emotional mess... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Emotional mess... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Emotional mess... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Emotional mess... 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!
Emotional mess... 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


Emotional mess...

4 posters

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Post  KLynn Thu Jun 14, 2012 10:26 pm

I've been an emotional mess since finding out I have vaginismus and vulvodynia. I've struggled my entire life with weight, which was hard to begin with, but then found out at 17 that I had ovarian cysts, then I developed hair in places most women don't grow hair, I suffer from bartholin cysts as well, and about a month ago was diagnose with vulvodynia and vaginismus. I know these things are manageable but having one after the other has made me an emotional wreck. I have a FANTASTIC boyfriend who is so supportive, but all of these things make me feel like a failure as a woman. Any advice on how to handle these things would be GREATLY appreciated.

For the vulvodynia I manage it by washing with cool water and no soap as well as wearing cotton underwear, but any other tips would be helpful. Its mostly manageable, but sometimes it can be quite painful.

Thank you for any advice you can give me.

KLynn

Posts : 3
Join date : 2012-06-14

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Post  ButterflyLiz Mon Jun 18, 2012 10:07 pm

Hi KLynn,

Not really sure what to say but just wanted to reply to you and say you’re not alone. It’s so hard to deal with all this when you’re young, especially as there’s so little info and support out there. It opened my eyes to see how many people actually suffer with this.. on here, in person at a VPS event and in recent research (around 25% of women will suffer at some point). I wish people talked about it more then we might not have all these emotional issues to deal with on top of the actual pain itself.

You’re totally not a failure, anyone who can put up with this stuff has to be a pretty strong person. Don’t forget there’s always therapy, if you think that might be of help. Over the years I’ve basically had to give up being embarrassed / feeling guilty about the condition cos I need all of my energy to focus on getting better.

Have the docs suggested any further treatment for the vulvodynia? The usual route is amitryptiline or gabapentin / pregabalin. You can also get numbing gels / creams which help some people (lidocaine – if you’re in the UK you can buy vagisil over the counter). Also, it’s not glamorous but ice packs – I use frozen peas in a freezer bag down there (you’re meant to wrap it in a towel or something first). Go carefully to start with until you’re sure helps rather than hinders! We’re all different.

Liz x
ButterflyLiz
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 38
Location : UK

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Post  bluekangeroo Tue Jun 19, 2012 10:11 am

Hey KLynn,

Don't worry - we all totally understand what you are going through on here. You are not alone and you are not a failure as a woman.

I often feel awful about my poor patient hubby - he has v high libido and mine has totally packed its bags and gone since this thing started. We've not made love in ages. But there are other things you can do to be close.

I feel like a crap mother quite often too, I have a 6 and 3 year old and often just can't do all the things for them that I want to, kick a ball around with them, play games outside, ride bikes... I feel so utterly pathetic when they ask me to do something for them and I just don't want to move.

It's a horrible horrible condition and so misunderstood. but I am really hopeful there is an answer out there somewhere... we just need to be tenacious and find it!

Find yourself a really good specialist who knows about vulva pain and get a treatment plan put together so that you feel empowered that you are doing something about it and you are not going to take this lying down (ok you might actually want to do a lot of lying down as that might ease the pain, but you know...metaphorically speaking!)

Take care

A

bluekangeroo

Posts : 44
Join date : 2012-05-17

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Post  riv Fri Jun 22, 2012 10:40 pm

Hey Klynn

You really have had a run of it haven't you. No wonder you are feeling crap. I know how you feel and Im sure a lot of the other women here do. I got diagnosed with endometriosis and a chocolate cyst at the same time as I was told I had vulvodynia and eczema in my vulva (just to add insult to injury). I realise now it has been going on for years (around 20) and now I am tackling one thing at a time and each time I take control of one aspect I feel more in charge to take control of the next one.

I have had the support of a very good gynaecologist for my womb which has taken me a year to get under control. I think this was probably the starting point for feeling like I could then tackle everything else - but slowly.

Now I am working on tackling my beard with fortnightly trips to the beautician for electrolysis. Next I will be using IPL to get rid of my moustache both of which I have had for 8 years and have had the power to reduce me to tears in shops with harsh over head lighting and big shiny mirrors that suddenly alert me to the goatee I thought I had tweezered away. The rest of my body hair (which is unruly, wiry and mannish to say the least from the endo and cyst) is being dealt with a bit at a time as I can afford to treat it. I quite like dragging it out this way as its also drags out the sense of satisfaction I get each time I beat another patch of hair! I do have a friend with PCOS who saved up and had virtually her whole body lasered as she was so sick of her cyst induced hair - it was pricey but she is very pleased she did it as it seems to have worked really well for her. we are both in our late 30's so it was something we had both dealt with for a long time and decided that we had finally had enough! I would say its even worth saving up for over a couple of years - I prefer spending money on my hair removal than going on a holiday this year and next if necessary


Now I am getting this sorted I am now looking at my V and trying one treatment at a time - firstly with physio - which you might want to investigate especially for your vaginismus - not sure how it would if your B Cysts are causing you problems when you go for a session - you might want to wait until those are in a good situation before trying physio

I also had Cognitive Behavoural Therapy for depression about 7 years ago which I would highly recommend - its nice to talk to someone neutral and the therapist will tell you that you have every right to feel shoddy as you have had a load of horrible things happen. They then help you to find coping mechanisms for when things go wrong so its not so overwhelming (because getting bad news - especially a run of it - is VERY overwhelming and tiring). If you are not in the UK and have to pay for treatment look for a vulvodynia pain support group - there may well be one near you - and that can be really helpful to meet other people with the condition and have a good moan

I would say that you might want to start with reducing your pain - I found that once my pain had been reduced from the endo I felt physically more capable and in turn emotionally stronger. being in pain is so tiring - it exhausts you and should not be underrestimated in how run down you can end up feeling when hurting all the time. so as the others have said get referred - a gynae for your cysts and seeing what can be done to manage those and make sure your hormones are dealt with, and a dermatologist or gynae who runs a speciaist vulva clinic. And dont be afraid to change speciaist - if you dont like your doctor ask to be referred somewhere else (there are some fantastic doctors out there but there are also a few naff ones). Dont just rely on a GP to help - they can be great as a first point of call but you need someone who really knows their stuff. Read some of the literature out there too - I am reading The Vulvodynia Survival Guide which so far is proving very informative

No one fails at being a woman. Being a woman is troublesome as we seem to have bodies that can go wrong in so many ways. We have wombs that are temperamental and our hormones make us carry excess weight and cry at innapropriate times. I do not know a single woman who does not have a female orientated medical condition (endo, PCOS, fertility issues, vulvodynia) you just find that these things aren't discussed openly. That's why these forums are so great

I really wish you luck on starting to find some answers and treatments that work

Riv x

riv

Posts : 10
Join date : 2011-10-27

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