Vulvodynia Support
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» Hope to all my suffering ladies
Lost and depressed EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Lost and depressed EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Lost and depressed EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Lost and depressed EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Lost and depressed EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Lost and depressed EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Lost and depressed 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!
Lost and depressed 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


Lost and depressed

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Post  Elc88 Sat Jul 20, 2013 1:24 pm

I have completely reached the end of my tether with this...

Four years ago, I was given a bath bomb. I had a really lovely bath, which turned bright blue with all the dye in the bath bomb. The next day, my bf and I were n bed, and it was like being with a cheese grater. Of course, I thought it was thrush, I tried the creams, they didn't work, went to the Dr, they gave me more creams and pills, went back to the Dr was given more thrush treatment... 6 months later they spiced things up with eumovate (steroid) cream, then they went back to the thrush treatments. After a year, I was referred to the vulva clinic, after 15 months, I finally saw a specialist an was diagnosed with vulvodynia. The Dr told me that on average it lasts 18 months, an I though 'great, only 3 more months of this hell'.

My first appt with the vulva clinic, I left with emulsifying ointment, anti-depressants, anaesthetic, instructions to cut out just about everything, and a whole lot of leaflets, and I was pretty happy that it would be over soon. I was referred to a physiotherapist to teach me pelvic floor exercises, an given cones to help stretch my muscles. Nothing helped.

I saw that specialist for 2 years before I moved to a new city 300 miles away and was referred to a new gynaecologist. This came with a whole new set of tests. I was told I had thrush again, I had swabs taken, and I was told that I had a collection of lumps around the vestibule which she thought were warts. Of course, I'm sure most of you have jumped on any new possibility that it might not actually be vulvodynia - I went to the sexual health clinic for tests, knowing that if I tested positive for anything, it would mean my boyfriend had cheated on me, but at least I'd be clear of this hell. It wasn't warts. It also wasn't thrush.

Six months ago, I thought perhaps it was a hormone defficiency, so I started to take herbal supplements for menopause (I'm 24), and waited until I went back to the gynaecologist. The gynaecologist decided to try me on estrogen supplements, which were horrible - I took them for a month and nothing helped, but coming off it again, I started to feel really depressed and tearful.

Five months ago, I decided it was an allergy to sulfates, and cut out everything that contained even a hint of them.

About 4 months ago I returned to the gynaecologist, and she said we had two options -steroid cream and come back in 3 months for a biopsy if that didn't work, or just go for the biopsy. I decided I had had enough and opted for the biopsy. I hadn't realised it would be a deep tissue biopsy, so I had only arranged to leave work for an hour, and had to go back afterwards (ouch!) but I didn't mind because it was finally going to give me some answers! Three months ago, I got the answer - contact allergic dermatitis!

I was so pleased I had an answer - there it was, finally, in black and white, it's not vulvodynia! There's a cure! I was so relieved, but I was trying so hard not to get my hopes up. I applied the cream every day for 2 weeks, then stopped for a week, applied it again for another 10 days before I got concerned it was causing everything else to feel swollen. I switched to a non-steroidal herbal equivallent, used that for 3 weeks, but that hasn't worked either.

I stopped using it 2 weeks ago now, and just feel really helpless. I finally had an answer and a way forward, but now it's back to this in-explainable pain, and I have no idea where to go next. The only light on my horizon is an allergy test next month, but I've stopped using everything I can possibly think of, and I'm just back in this horrible situation again.

I'm still with my boyfriend, and we've been together for nearly 4.5 years, but we haven't been together for 4 years now. I'm 25 in 6 weeks, and I'm starting to reach the age where I'm thinking about the possibility of getting married, having kids down the line, but I just don't know how I'm supposed to be able to do that! I can't get married because I can't consummate it, and I definitely can't have kids. Although I love my boyfriend, this is not fair for him - he's young, and should be able to enjoy his life, and I can't escape that horrible feeling like I'm just holding him back, and he's only here out of obligation. I can't speak to anyone about it, because it's impossible. I told my closest friends about this problem 2 years ago, but they haven't mentioned it since, and I think they have assumed it's all better now, because why wouldn't it be.

My current job has me 300 miles away from home, and I've been so lonely, that when I came off estrogen, it threw me into depression. I started to get out from under my cloud, but the failure of this latest cure just has me spiraling back down to my lowest ebb, and I have no one to help support me through it - even my boyfriend is 300 miles away. All I want to do is cry, I haven't got a clue how to go forward, and I'm just drowning in it all.

Elc88

Posts : 55
Join date : 2013-07-20

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Post  Sarah001 Sat Jul 20, 2013 5:24 pm

If it is contact dermatitis have you tried any anti-histamines? I would have thought if it was allergy based that would be the place to start if you haven't already, I'm not sure which one would be the best for it as they all work better for different problems but it might be worth a try? There are also anti-histamine creams but I think I'd start with tablets. Also I think I would look up all the ingredients in a bath bomb if that started it and see where else these things could be, it might lead nowhere but it's something I would do just in case. When I went to a GU clinic to get checked out the dotor there was telling me about a lady who had contact dermatitis behind her V and they just couldn't figure out why because she'd stopped using soaps etc and finally it emerged her husband was reading a newspaper before going to bed then he'd touch her and she was allergic to the newspaper print so it could be any number of things causing your symptoms. If you haven't tried anti-histamines though I would at least give that a shot.
Sarah001
Sarah001

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Join date : 2010-06-11
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Post  Elc88 Sat Jul 20, 2013 6:52 pm

Sarah, thanks for the suggestion, that is an unusual but good idea. It's definitely not newspaper ink, but over 4 years, I can't think of anything I haven't stopped using for at least a little while... I wondered if there was a chance it's something I'm eating as well. But also can't help but shake that feeling that, while the biopsy found a problem, maybe there is more than one.


I meant to say in my post -I'm sorry for the incredible length, I'm so frustrated it kind of ran away with me! My one bit of advice for others would be to ask their gynaecologist whether they think a biopsy is something they will be offered eventually. Despite the pain and intrusiveness, I wish I had had mine 3 years ago - it would have saved me so much time, money, energy and tears chasing false possibilities.

Elc88

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Join date : 2013-07-20

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