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» Hope to all my suffering ladies
Vulval Specialist Appointment EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulval Specialist Appointment EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulval Specialist Appointment EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulval Specialist Appointment EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulval Specialist Appointment EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulval Specialist Appointment EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulval Specialist Appointment EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulval Specialist Appointment 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!
Vulval Specialist Appointment 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


Vulval Specialist Appointment

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Post  Guest Fri Mar 11, 2011 7:34 pm

Hi all. Had my appointment with my gynacologist last week and vulval specialist this week. Both are convinced this is allergy related as i am so swollen and very itchy. She said that the skin isnt inflamed! Had oral steroids for 5 days which bought the swelling down so much, now just slightly swollen and very itchy! Got strong antihistomines which make me groggy so not sure wether i will keep taking those! Got to go back in 6 weeks, she said about getting me alergy tested. Was a really positive appointment, she didnt seem to think i had vulvodynia but said she sees lots of women with it and they do get better. Very Happy

Was advised to use non purfume, non chemical, loo roll and sanitry towels which i managed to find all in waitrose, think this has helped alot! She also said use nothing but water. (Cant beleive i hadnt thought of this!)

Was reading alot on the internet this afternoon and came accross a website which had casestudies and people that have got better it said about a supplement called oral calcium citrate which stops the urine irritating vulval skin and another website where somebody was cured by using vitaclenz which is for cleansing the body of parasites and candida that can live in the body, so have just ordered both! Laughing Lets see if that helps!

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Post  Sebby (Admin) Sat Mar 12, 2011 5:09 pm


Glad you felt positive about your appointment Smile

I have been told to spray the vulvar with water everytime I urinate so it doesnt irritate the skin. I also apply vaseline as a barrier to rubbing. This routine has really helped

Since having this I have only ever washed the vulval area with water only. No sitting in a bath with soap!

I am also cutting out sugar and wheat in order to combat yeast. Other good anti yeast things are Caprylic acid, ginger, coconut, garlic and acidophylis (bio active good bacterias)

Also just drinking lots of water can cut the oxylates in your urine by 80%!

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Post  Guest Sat Mar 12, 2011 5:50 pm

Doing the diet thing too! (well trying) Missing coffee the most! Just been to a kids birthday party and had cake too! sooo hard but really going to try it for a couple of weeks and be really good.

Have been rinsing after weeing with luke warm water from a cup will try the spray.

Thanks for all the info Sebby.




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Post  Guest Sat Mar 12, 2011 5:52 pm

Am too scared to try anything else down there, even vaseline! The vulval specialist has given me this waxy stuff to mix with water to wash with and im too scared to use that too! Everytime i try anything it blows up like a balloon!

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Post  Sarah001 Sat Mar 12, 2011 9:32 pm

I've used vaseline alot during the last year but there are two schools of thought about oily products down there, some doctors believe they protect the skin from rubbing and urine and others say don't use them as they clog the glands and stop normal secretions. It's down to what works for you though. If you have an allergy situation going on I'd probably say don't use anything just in case!
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Post  Guest Sun Mar 13, 2011 5:04 pm

Thank you for all the info Very Happy

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Post  noni Sun Mar 13, 2011 5:14 pm

Hey Joanne,

Thank you so much for your update!

I have also considered if my problem is allergy related...I think all us ladies need to get allergy tested!!!

Have you ever noticed that some days, for no apparent reason, you puff up down there? Is it hormones or what is it???
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Post  Guest Sun Mar 13, 2011 5:27 pm

I only swell up when people give me new creams to try! She thinks i have built up a sencitivity to everything. This all started for me after leaving a tampon in and had really strong antibiotics, she thinks mine could be an allergic reaction to something in the antibiotics or the tampon itself! She also said that all the steroid creams i have been given to try has made it worse! She thinks i only have pain because of the swelling and said it can take time for it all to go down.

I was 90 percent better in January until i tried another steroid cream which blew me up again and still swollen! It is the itching and swelling that is just unbearable! Feels really dry too!

Definitey think allergy testing would be a really good idea.

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Post  Sarah001 Mon Mar 14, 2011 8:07 pm

I've been back to see my vulvar specialist today and it was a bit of a wasted journey, she just told me to stick with the Pregabalin for now and see if my GP can up it over the next 3 months before I go back. That was it. I'm sure mine isn't allergy related though as I already take alot of anti-histamines for other allergies which ought to control the problem if that was the case.
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Post  noni Mon Mar 14, 2011 10:13 pm

Hey Joanne,

Its interesting you should mention the dryness...I think it could be from all the cream...initially with my Vulvodynia I looked pretty normal down there minus the red, swollen look...but after using hydrocortisone for waaaay too long and waaay too much application my skin looks different.

So Im very suspicious of creams these days. And after reading sarahs post about her bubble bath, im convinced im super paranoid about anything coming into contact with that area. Im glad sarah enjoyed the bubbles, but I almost had a panic attack reading the title!
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Post  Guest Tue Mar 15, 2011 7:56 am

Hi Noni.

How long have you been suffering with tihis? Have you been diagnosed with V?

The swelling is the only thing that causes me pain and discomfort, other than some itching. Seen two people that have said its not V. 3 people seem to think that one of the antibiotics i was given through a drip can cause this side effect of swelling of the mouth lips or those lips! The creams have definitely not helped! The skin is not red i am just swollen! Just bizare! Where it was so swollen and gone down a bit im kind of left with a bit of excess skin which is uncomfortable! Dont find speculum examinations painful and had sex before it all blew up again 4 weeks ago from another cream!

What is with these people that keep giving steroid creams to try Evil or Very Mad

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Post  Sebby (Admin) Wed Mar 16, 2011 9:44 pm


Hi Joanne your posts are coming up as Guest, which is baffling me as Guests cannot post! I cannot find your old profile under the Administration panel either..very spooky.. have you deleted your membership maybe by mistake after the last post as this can be the only explanation?
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