Vulvodynia Support
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» Hope to all my suffering ladies
I... just... ARGH (I'm a horrible person) EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I... just... ARGH (I'm a horrible person) EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I... just... ARGH (I'm a horrible person) EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I... just... ARGH (I'm a horrible person) EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I... just... ARGH (I'm a horrible person) EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I... just... ARGH (I'm a horrible person) EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I... just... ARGH (I'm a horrible person) EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I... just... ARGH (I'm a horrible person) 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!
I... just... ARGH (I'm a horrible person) 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


I... just... ARGH (I'm a horrible person)

2 posters

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I... just... ARGH (I'm a horrible person) Empty I... just... ARGH (I'm a horrible person)

Post  Haze Wed Oct 19, 2016 1:18 am

Last posted May 2016 in the new members section, having been referred to a dermatologist and waiting an appointment following a 5-year-provoked-pain-sex-impossible-very-miserable ordeal. I feel like I should have posted here since, tried to provide some support to others, but since I haven't found anything that's helped me in the slightest it's a bit difficult to give advice... sorry, but all I have is anger about the whole thing and I don't think that helps anyone. I just need to rant before I hurt myself and I can't write something like this to a person I know IRL without consequences.

Had my appointment this week and the dermatologist confirmed everything I had previously said about my referral to her in the first place - there is no dermatological issue, and nothing she can help me with. I knew that already and this non-revelation certainly wasn't worth the five month wait.

This is the pattern. Get a referral, wait 5-6 months, have an appointment, be prescribed something, wait 5-6 months, return to discuss how the prescribed treatment has not worked, wait 5-6 months, receive letter informing of who they're passing me off to next, rinse and repeat. Go back to the GP as often as possible to be told that they won't do anything else at all while I'm waiting for my letter/appointment/whatever.

So, imagining for a moment I didn't have a vagina that feels like an open wound, my newly engaged finance and I would ideally like to get pregnant after our wedding in 2018 (at which point we'll have been together 7 years, living together for 5), but open to getting pregnant before that - because what if we miss our only chance because we're waiting? We're still sexually active, minus penetration and contraception, and we're aware that it's unlikely (but possible) to get pregnant this way - even more so unlikely because I have PCOS and go months without a period. We may never have full intercourse again, it certainly feels that way.

So we optimistically decided that with waiting times, criteria, funding, chances of pregnancy reducing with aging etc, etc, etc... let's go to the doc, tell them we want to get pregnant, let's get on a waiting list for any form of fertility treatment. I thought I'd prepared for the worst, maybe being handed a leaflet and shuffled out of the door, maybe being told that we would be waiting years past our timeline for even the first consult, etc.

I was NOT prepared. Artificial insemination not available to me, at all. IVF available only to couples who had been trying to conceive via regular sexual intercourse for 12+ months, so not me. No allowances for the fact that I CANNOT have regular sexual intercourse. No allowances for the likelihood that there are other fertility issues with the PCOS/lack of periods - I can't prove it, because I can't say "I'm having sex AND not getting pregnant".

So what are my options? I have to wait until they fix me, then have regular sex for a year and THEN they will refer me for my first consult if I don't get pregnant. Lucky whooping-fucking-do me. It's only been FIVE WHOLE YEARS that I haven't been able to have sex, during which I've averaged two five minute appointments a year with specialists who shrug their shoulders and leave me waiting half a year with nothing to do but sit and wait around, thinking about how defective my body is.

I know I'm probably over-reacting but I have basically been told that if the pain doesn't go away then no children for me ever.

And I know I'm probably over-reacting but I don't understand how they could expect me to be okay with sitting and wait patiently for them to figure out what's wrong and fix it when it's been five years and virtually nothing is being done to help.

And I know I'm probably over-reacting but I really don't feel I can cope with the concept of never having my own children, and even worse, forcing that on my partner too - that isn't sharing my pain with him, that's just doubling the pain.

And I know I'm probably over-reacting, but it's been hinted to me that the next referral I'll be getting is for psychological help and fucking hell... I'm more than happy to try therapy, but my past experience of mental health referrals suggests that my next wait is going to be well over 5-6 months (over a 2 year wait following teenage suicide attempt many years ago - and if they can't fast-track the overdosing child, what hope is there for a sad woman with a hurty vagina?)... I've actually been asking for a mental health referral for a long time now, but I know it's not the solution to my pain! At this rate I'll still be waiting for help as I hit the menopause.

The only alternative is private care that we cannot afford. I'm doing everything I can do with what I have. I've been thinking about hurting myself enough down there to maybe force surgery to happen. I've been thinking about obtaining something along the lines of heroin... maybe that could numb the pain/knock me unconscious for long enough so that he could have sex with me. I've been thinking that maybe I will need to ask him to physically restrain and essentially rape me.

I don't feel like a woman. I might as well have no reproductive organs, they're all broken. Suicide was kind of lingering in my brain's periphery and now it's standing centre stage, waving it's arms. Not planning for it in the near future, but it definitely feels like my brain is trying to schedule some kind of cut off point, where I decide I'm not willing to wait anymore.

Just want to end with: I'm actually very sane and level-headed when this issue isn't at the forefront of my mind. I am in an exceptionally healthy relationship (going strong despite no sex, genuinely only two small 1-hour arguments in over five years, and it goes without saying my partner would NOT agree to the drastic measures above). I hold a full time job, I have friends, close family relationships, I even have a couple of hobbies - I'm a functioning person! I don't WANT to die, I don't WANT to conceive a child while unconscious, I know that harming myself is not a sensible action to take if I want to be a parent - these are last resort thoughts that repeat over and over in my head against my will and best judgement. I read back through this before posting, and if the writer was a stranger to me, I wouldn't think they were fit for motherhood. But this is what my medical problems are doing to me. It is holding ransom everything I hold dear, all my plans for the future, control over my own life. Perhaps I'll feel better in the morning, or maybe in a few years I'll be able to accept a life without children, or maybe they'll fix me but I'll still be a headcase. I am so sick of this.

Haze

Posts : 5
Join date : 2016-05-25

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I... just... ARGH (I'm a horrible person) Empty Re: I... just... ARGH (I'm a horrible person)

Post  PainBlogger Wed Oct 19, 2016 9:00 am

I'm sorry to hear how bad you're feeling. I can appreciate to some extent how stressful it is to deal with this condition as well as wanting to conceive. I'm finally able to TTC with my husband again (you can read about my history here: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement ) but we just had some fertility tests done because we've had no success in over 18 months (12 months before vulvodynia and 6 months since being able to try again), the tests did show a problem, and IVF is not available on the NHS where I live for anyone. Sad So I feel like every obstacle I overcome I just get another one put in front of me. I have to be grateful though that there is a chance it could happen naturally before I get too old. I don't mean to equate my situation to yours, I just wanted to say that I can empathise.

Are you able to insert anything (like a tampon or small dilator)? I've seen info on the Internet where people have had success with DIY artificial insemination at home. Obviously you'd need to be able to use a small syringe (minus needle of course) for that to be an option and it wouldn't be as likely to work as AI where they inseminate into the uterus directly (IUI). Have you tried physiotherapy and/or dilators? What about lidocaine gel/ointment? Which medications have you tried?

Another option, which is not ideal but I'm sure people have done, would be to say to your GP you have been trying for over a year. I don't like to advocate lying, but, honestly, in your situation (and maybe this makes me a bad person) I would personally consider it. I guess you'd have to wait another year before doing that though as the GP knows that at the moment you haven't been able to.

Whatever you do, don't try to push through the pain and have sex. It will only make things worse and you could cause relationship difficulties in a relationship which sounds very strong.

I hope you find something that helps you soon.

PainBlogger

Posts : 219
Join date : 2015-07-27

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