Vulvodynia Support
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» Hope to all my suffering ladies
Desperate for advice. Bad flare up. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Desperate for advice. Bad flare up. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Desperate for advice. Bad flare up. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Desperate for advice. Bad flare up. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Desperate for advice. Bad flare up. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Desperate for advice. Bad flare up. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Desperate for advice. Bad flare up. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Desperate for advice. Bad flare up. 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!
Desperate for advice. Bad flare up. 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


Desperate for advice. Bad flare up.

2 posters

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Desperate for advice. Bad flare up. Empty Desperate for advice. Bad flare up.

Post  sailor_moon Tue Feb 10, 2015 3:41 am

A few questions to my lovely ladies, any advice would be much appreciated

Does anyone else go through bad flare ups where their "innie bits/vulva" actually become swollen? I have been in so much pain the last 3 days I have been unable to go to work [use the excuse I have a migraine and vomiting], and I am so red and swollen..it's all puffed up! I have been sitting with an ice pack between my legs. nothing gives me relief.

Does anyone else get more irritated the more active they are? The more I walk, the more burny, itchy and chafed I get.

Any tips apart from the usual Lignocaine, ice pack, coconut oil and anti-inflammatories on how to get some relief? Steroid creams and other emollients make me worse. Lignocaine and coconut oil are the only things I can use down there...the pain is so bad atm the lignocaine isn't doing much.

Does anyone else on here suffer from low estrogen? I have low estrogen but my doctor suspects I have endometriosis which feeds on estrogen. I am on a waiting list to have a laproscopy and hystoscopy but the hospital informed me yesterday that I will be waiting up to 10 more moths before my op because the waiting list is so long!! I will be talking to my specialist to try and get him to push it through quicker, I will end up killing myself, unemployed or divorced if I have to wait that long with no form of relief!! I can't take any HRT until the operation gets done. Mad

Has anyone had success with alternative medicine or naturopaths? I am really considering going down that route because I am having no success with western medicine. I am just sick of spending money on remedies that do not work.



And lastly....any tips on how to cope emotionally? I am slowly going downhill again, its coming up to the 2 year anniversary of having V and I am finding it extremely hard. Especially with dealing with being in pain and discomfort at work when you can't escape to "adjust your undies" and are in agony but have to smile and deal with people. I am finding it harder and harder to work like this! especially when I have horrible bosses who have threatened to fire me for having time off dealing with my combined illnesses and hold the health issues I have against me. Also I am finding it hard to cope with not physically being able to have sex with my husband...I try my hardest but with the discomfort of V it has shut down my emotions for intimacy because the discomfort is all I can focus on. I feel constant guilt because my husband deserves a normal, good wife, and a he deserves a great sex life. He has stuck by me through all of this but I cant help thinking he will leave me sooner or later because you cant have a normal marriage with someone who has V. I'd be lying if I said this hasnt affected our marriage. Being young is even harder...we are meant to be at our sexual peak. And wanted to have a baby soon but that's impossible...I am in enough pain and I think pushing out a baby would do more permanent damage to my vulva...let alone the pain of labor with V!!!!

Any advice would be much appreciated ladies.







sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Desperate for advice. Bad flare up. Empty Re: Desperate for advice. Bad flare up.

Post  kvelipuri Sun May 17, 2015 6:56 pm

Just a note to let you know you are not alone - I too am suffering from severe swelling. The swelling goes up and down, but at its worst my vagina is totally swollen shut and walking is out of the question. No creams have worked - steroid, estrogen, or lidocaine - and in fact seem to correlate to more swelling (but who knows if there is actual causation). Anyway, still working on a treatment but wanted to let you know I'm going through the same, as it seems this kind of swelling is not a predominant symptom at least based on reading most people's stories.

kvelipuri

Posts : 6
Join date : 2015-05-17

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