Vulvodynia Support
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» Hope to all my suffering ladies
Five weeks of stability EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Five weeks of stability EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Five weeks of stability EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Five weeks of stability EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Five weeks of stability EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Five weeks of stability EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Five weeks of stability EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Five weeks of stability 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!
Five weeks of stability 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


Five weeks of stability

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Five weeks of stability Empty Five weeks of stability

Post  PainBlogger Mon Feb 22, 2016 9:56 am

I hope I'm not tempting fate by writing this(!), but I've been looking at my pain diary and it's now five weeks since my pain has gone over a daily average of 2/10. What's more significant is that I've been doing stretching exercises on my PFMs during that time with the smallest dilator and although progress is very slow I am noticing that the muscles are gradually becoming less tight and more flexible. I know that I could have a setback any day, but having this period of some stability has boosted my confidence so that if/when I have a flare, I can believe more easily that it will be temporary and I can hopefully have increasingly longer periods between flares.

Anyway, I just thought I'd share that in the hope it will encourage anyone who is feeling pessimistic at the moment. Smile

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Post  WaahwaahUK Wed Feb 24, 2016 3:39 pm

This is fantastic! Really pleased to hear your progress. Where did you get the dilators from, were they prescribed to you? I've just bought the Amy Stein book and it makes an interesting read with regards pelvic pain / vulval pain etc. Wishing you tons more good days!

WaahwaahUK

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Post  PainBlogger Wed Feb 24, 2016 5:25 pm

The dilators were recommended by both the physio and consultant. I got them on Amazon (Amielle comfort brand). Considering they are just bits of plastic they are somewhat expensive, but needs must Rolling Eyes .

I have the Amy Stein book too. I should probably re-read it now that I'm making more progress and see if there's anything I can add to what I'm already doing.

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Post  WaahwaahUK Wed Feb 24, 2016 6:48 pm

Did you get the physio through your GP? Is it a womens health physio? Sorry for all the questions! I just feel like I've been left in the lurch a bit and it's so useful to hear other UK progress.

WaahwaahUK

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Post  PainBlogger Wed Feb 24, 2016 9:09 pm

I sorted the physio out myself privately. I don't think the GP even knew physio was an option for this! But, in any case, from what I've heard, it's nigh on impossible to see an NHS women's health physio in this area, though maybe in big cities like London it's easier to find one. Although no doubt on the NHS there's a limit to a few sessions. There's no women's health physio in the town I live in so I have to travel a bit as it is.

Yes, she's a women's health physio. She also still treats more general problems, but she's done the post-graduate training for women's and men's health i.e. bladder/bowel/pelvic symptoms. I think they have to have done that before they can do any internal assessments and treatment.

And no worries about the questions. If I can help then I'm happy to. Smile

PainBlogger

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Post  WaahwaahUK Sat Feb 27, 2016 2:07 pm

Thank you. I found out this week there is a women's health physio place in my town, and my GP can refer. So now I just need to be able to get a GP appointment again which is virtually impossible! In the meantime I may ask my osteopath his opinion on it. I'm all for the nhs but things take so long sometimes.... I am fairly certain I have pelvic issues in all this so I would really appreciate an expert having a look. Gynaecologists have been really unhelpful.

WaahwaahUK

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Post  PainBlogger Sat Feb 27, 2016 9:14 pm

I hope you find a physio assessment helpful. I too am all for the NHS - I think we're very lucky in this country to have such a service and to know that if something life-threatening occurs there's no need to worry about paying for treatment. But there's not enough funding or resources when it comes to a lot of non-life-threatening chronic conditions Sad


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Post  PainBlogger Sun Mar 27, 2016 9:00 pm

In the hopes that it might encourage others, I just wanted to post and report that my five weeks of stability is now nine or ten weeks. I haven't had a real flare up since mid-January. My average daily pain has not gone over 2/10 in that time and more often than not has been more like 1/10 - very low level or even absent. Emptying my bladder is still the time when I'm most likely to get a spike in pain, but it hasn't persisted for long.
In addition, I'm seeing an improvement with my tight pelvic floor muscles and I've been able to progress to stretching with the third dilator in the set of five without provoking pain. It is quite time consuming to devote half an hour a day to those exercises, but I feel like I can see the light at the end of the tunnel.


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Post  WaahwaahUK Tue Mar 29, 2016 4:34 pm

I'm so so pleased for you! Please keep posting your progress!

WaahwaahUK

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Post  PainBlogger Wed Mar 30, 2016 10:03 am

How's it going with you, WaahWaah?

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