Vulvodynia Support
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» Hope to all my suffering ladies
it is NOT 'all in my head' EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
it is NOT 'all in my head' EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
it is NOT 'all in my head' EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
it is NOT 'all in my head' EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
it is NOT 'all in my head' EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
it is NOT 'all in my head' EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
it is NOT 'all in my head' EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
it is NOT 'all in my head' 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!
it is NOT 'all in my head' 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


it is NOT 'all in my head'

4 posters

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it is NOT 'all in my head' Empty it is NOT 'all in my head'

Post  ivyrose Tue Jun 26, 2012 8:39 pm

fed up with the way i am constantly being patronised and humoured by doctors!!!!!!! today i had a check up at the hospital and had to see a new female locum. i explained that it is likely i have a trapped nerve (i am almost certain now that my pain problems stem from a trapped or damaged pudendal nerve now based on the success of chiropractic treatment, my many trapped nerve symptoms, reduction of pain after i lie down etc etc). but this woman said to me, 'i think most cases of this are actually down to psychological problems.' (!!!!!!!!!!!!!) when i argued back she stuck by this view and would not accept that this is an actual physical condition and not just a product of some mental issue.

i am starting to wonder whether a cyst is pressing on the nerve as i've never had any kind of accident as far as i'm aware. i think that this should have been ruled out a long time ago with a scan. the dr did arrange for me to see a neurologist and have a scan but she said i am simply 'too young' to have a cyst. she discredited most of what i had to say then pulled out the 'its all in your head' card again. as i left she said patronisingly, 'i look forward to hearing what the neurologist finds'. i burst into tears when i left the room having been treated like some kind of idiot / nut job.

what is wrong with these people!? it almost seems as if they think i ENJOY having to go to these appointments, or do they think we're all complaining about this pain for attention or something?? so so mad right now Sad i shouldnt have to deal with this shit

ivyrose

Posts : 27
Join date : 2011-07-16
Age : 30

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Post  ivyrose Tue Jun 26, 2012 8:42 pm

plus, i have also had many symptoms of a cyst that the drs couldnt explain before the vulval pain started such as spotting, irregular periods, acne..... it does all seem to add up that maybe a cyst could be involved. i'll keep everyone posted if i can shed any light on all this stuff eventually....

ivyrose

Posts : 27
Join date : 2011-07-16
Age : 30

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Post  riv Tue Jun 26, 2012 10:19 pm

Make a complaint! Be prepared to get a crap answer (I got one along the lines of 'no one else has every complained about me' and a lot of waffle) but if EVERYONE complains about the poor treatment we get for this condition people might start listening

Also you will feel mildly better after you complain

You will probably get really angry again if you get a fob off letter (I was furious and wrote yet another complaint letter - waiting for a response to that one)

I left one gynae appointment sobbing from the pain and didn't stop crying for hours - the nurse told me that I 'some people have a lower pain threashhold than others' (although the nurses took my complaint about this on board and raised it at a meeting so I had some success there)

This is NOT in our heads, we ARE in excrutiating pain and we need to push back against the doctors who are dismissing us and therefore damaging the progress that is being made by doctors who are working hard to fix us.

Riv x



riv

Posts : 10
Join date : 2011-10-27

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Post  ButterflyLiz Thu Jun 28, 2012 10:16 am

ivyrose, I have to say I am completely outraged by what that doctor said to you! Especially after you have had such success at the chiropractor’s – she is a pretty poor doctor if she does not see a connection between your treatment & the subsequent reduction in pain.

She clearly has no evidence or research to back up her ill-informed opinion so it is simply prejudice and that kind of attitude should have died out years ago. If you can face it, definitely put in a complaint. You could make reference to the BSSVD (British Society of Vulval Disease)’s evidence-based guidelines for managing vulvodynia, which clearly state that there is NO evidence for a psychological cause of the pain (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2010.09684.x/full).

I find it very hard to swallow that women who are already distressed and in pain are met with this kind of dismissal and are expected to cope with that as well as the pain.

Riv – well done for persisting in your complaint. I can’t believe they thought “no one else has complained” is an acceptable answer! I hope you get a more satisfactory response this time.

Liz x
ButterflyLiz
ButterflyLiz

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

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Post  BpCookie Sun Jul 01, 2012 6:49 pm

Hello Ladies, I feel for each and every one of you. Ive had the bad Dr., the useless Dr., the Dr. who was frustrated because she couldnt find an answer for me, the Dr. who I thought was completely wrong, the Dr. who didnt even look at my vulva or vagina and just gave me a med., a hand full of Dr.s who keep telling me that it doesnt look that bad (I dont care what the hell it looks like, it hurts like Hell) etc. I tried thinking outside of the box (no pun intended) and saw my pain specialist and asked for pain meds. This Dr. treated me like I was a drug addict. When she absolutely refused to give me a script, I broke down crying right in front of her and I bawled all the way home and hours after.

Get angry at these Dr.s. Tell them EXACTLY how it feels. Dont tell them that it itches and burns, tell them that its a PAINFUL burning or PAINFUL itching. They need to know that it is a painful. Go to your gyno every single week if you need to. The more they see you the more they will understand that you really are in pain.

Do some research. Bring a list of symptoms and questions to each apt. Bring a list of treatments and meds that you have read about and ask if you can try them. DONT GIVE UP. Make yourself heard!!!!!

May each and every one of you find that miracle med.

hugs to all
Cookie
BpCookie
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

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