Vulvodynia Support
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» Hope to all my suffering ladies
Mine is really bad at the moment EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Mine is really bad at the moment EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Mine is really bad at the moment EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Mine is really bad at the moment EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Mine is really bad at the moment EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Mine is really bad at the moment EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Mine is really bad at the moment EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Mine is really bad at the moment 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!
Mine is really bad at the moment 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


Mine is really bad at the moment

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Mine is really bad at the moment Empty Mine is really bad at the moment

Post  Ceriane Wed Nov 09, 2016 4:24 pm

I have had vulvodynia for years. I also have vitamin deficiencies which are really bad at the moment B12, D3 and anaemia. I avoid getting into relationships because of it, and have also started avoided even socialising if I know I will be in situations where I will be constantly quizzed over why I'm not in a relationship. It is getting me down so much and making me miserable. I really feel disabled by my condition. At the moment I have a lot of soreness and dryness of the vagina, it is so uncomfortable and I couldn't face even being intimate with anyone at the moment. I have zero sex drive. I also have what feels like a uti...a burning sensation in my bladder, and around my back passage the skin is so sore it is splitting open. I am in so much discomfort and pain, feel like I have a yeast infection I can't get rid of. It makes me feel really horrible...I don't think it is the nerve pain thing (although I think I have that as well) I think it is more infection, skin condition related and linked to my body being very run down by my vitamin deficiencies. I don't think this is something that can be solved by an operation, I worry that if I was with a guy, they would expect me to have the operation....but I don't think my problem is that simple (guys always think there is an easy solution). It's getting me down emotionally and I can't go on avoiding relationships forever (like I have done for years....and people's questions are getting more and more awkward). I just don't know what to do...I am so miserable. Can anyone relate or offer me any advice. Would be appreciated.

Ceriane

Posts : 76
Join date : 2012-02-16

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Post  Sebby (Admin) Wed Nov 09, 2016 5:17 pm

Hi, I'm sorry to hear you are going through a bad patch.

I had my worst time with it back in 2009 for over 2 years. I had constant pain, rawness, soreness etc.

I have always had provoked and I think it was stress that caused the constant pain. Then suddenly it went! I still do have provoked but not pain 24/7. I wish I could know what helped I was on lyrica but have since come off it with no problems.

It can be such a bloody mystery this condition, feels more like art than science trying to find solutions.

What have you tried so far? physio? meds? diet? there is so much to try and it can feel so overwhelming but different things seem to help different ladies.

Don't rush yourself to feel able to date or feel you have to make excuses. I was single for the 2 years and just said I needed time on my own for me.

I started dating my now husband in the spring of 2011 and was so nervous when I told him about the V but he has been amazing and patient! You never know you may meet someone just as understanding.

including myself two other ladies I met of this forum met someone and got married all whilst struggling and still struggling with V.

There is always hope and healing

Keep us up to date

Sebby
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Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Ceriane Thu Nov 10, 2016 10:01 pm

Thanks Sebby...That has really helped. You know...I think people underestimate how much stress can be a factor...I know when I'm stressed mine gets a LOT worse...feel a lot more positive now about learning to manage my condition, and that I can still have a great relationship. Wish I hadn't let it put me off for so long.

Ceriane

Posts : 76
Join date : 2012-02-16

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Post  Sebby (Admin) Sun Nov 13, 2016 6:33 pm

Yes you can have a great relationship as many of us have.

Stress and anxiety definitely makes my condition worse. Its a vicious circle having V and an anxiety disorder as they both feed each other.

I try to practise mindfulness and breathing exercises as well as prioritising self care.

Don't give up searching for a treatment that works for you. Its normal to hit dead ends on many of the roads but at some point you do find something that helps.

Wishing you luck and healing

Sebby
x
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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