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» 7 months since the diagnosis
My almost 4 year old was diagnosed today EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My almost 4 year old was diagnosed today EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My almost 4 year old was diagnosed today EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My almost 4 year old was diagnosed today 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!
My almost 4 year old was diagnosed today EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
My almost 4 year old was diagnosed today EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
My almost 4 year old was diagnosed today EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
My almost 4 year old was diagnosed today EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
My almost 4 year old was diagnosed today EmptyMon Apr 08, 2019 7:54 am by Jo44

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


My almost 4 year old was diagnosed today

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My almost 4 year old was diagnosed today Empty My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 11:50 am

Hello

This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.

Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. Nothing consoles her. It is really upsetting for anyone who is with her as well, my poor dad was babysitting during one epidode and had to be talked out of calling an ambulance.

Whilst she has had some pain in the day, it normally only occurs at night. Her only relief is a cold pack between her legs, but that only helps a bit. Our GP ruled out UTI, thread worms and thrush.

The paediatrician this morning told me that she was very likely to grow out of it but to come back if it gets worse. I left feeling really reassured until I came home and Googled Vulvodynia....nowhere mentions growing out of it. I am really worried for my daughter now and her future well-being and relationships.

Does anyone have experience of very young children diagnosed with this?

HazelsMum

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My almost 4 year old was diagnosed today Empty Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:20 pm

I'm sure you've ruled out irritants, but I wanted to throw it out there just to be sure. Below are some of the top ones that come to mind, and just remember, it can take months or years for a reaction to show. So don't rule out things you've been using on her for a long time.

- Wipes: I was using flushable wipes for MANY years before I started to have a reaction to them. If you're using them on your daughter, it may be a really good idea to stop for a month or so to see if things improve.

- Laundry Stuff: Detergents, dryer sheets, fabric softeners, etc. Even the ones that say they are "gentle" contain tons of chemicals. Check out this website for the ratings of common laundry products: http://www.ewg.org/guides/subcategories/49-LaundryDetergentHE

- New Clothing: I have an allergy to unwashed new clothing where I break out into a bodysuit-type rash if I even brush up against unwashed clothing. I now need to wash my clothes at least 3 times before wearing them.

- Bath Products: Shampoo/conditioner, soap, body wash, bubble bath, etc.


I'm sorry your daughter is going through this, and I hope she finds relief soon.

emalita

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My almost 4 year old was diagnosed today Empty Re: My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 4:40 pm

Thanks for replying. My daughter has quite bad eczema so we are already pretty carefully with detergents chemicals in the house. She has special soaps etc in the bath. We've found no relationship between what's she's done during the day .(swimming, bath, what's she's eaten) and when she has an episode. It is so frustrating. I really want to be able to pin it on a particular trigger but haven't been able to identify one.


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My almost 4 year old was diagnosed today Empty Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:51 pm

My reactions didn't show themselves for maybe 24-72 hours after coming into contact with the irritant. So make sure to be expanding your daughter's symptom journal to things that she's come into contact with the last 3 days or so since chemicals have a sneaky way of hanging out in the body for a little bit before setting off a reaction.

It sounds like you've already done all this, and I'm sorry if I'm telling you things you already know. I just know how frustrating allergies can be since it took me so many years to identify my triggers because they were never as "obvious" as doctors and the internet made them sound like they should be  Wink

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My almost 4 year old was diagnosed today Empty Re: My almost 4 year old was diagnosed today

Post  Toobusy9561 on Fri Aug 26, 2016 9:52 pm

How did the doctor rule out worms?

I ask because there is an old thread on another site about children having pain, mostly at night. Once the lights are out. Many of them did the "tape" test and was negative but persisted and were able to see a worm. Apparently, they come from the rear but move up into the vagina as well and that's where the pain is. Some would wait until their children fell asleep and then flick on the light and do a quick check but others said to wait until they are sleep, use a flashlight and look because the light makes the worms pull back in so you won't see them.

Their descriptions of their children's symptoms sounded like yours. Some even had it for years.

It was also suggested to try a worm medication anyway just to be sure. These girls were in pain but once they treated for worms, they were fine.

I'm not sure if we can post off site links. If we can, then I will post it so you can read about it.

If not vulvodynia, then possible Lichen Sclerosus? Children are known to get this. Usually the vulva skin will have white patches or areas though.
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My almost 4 year old was diagnosed today Empty Re: My almost 4 year old was diagnosed today

Post  Pavloviandoggy on Tue Oct 04, 2016 3:27 am

Has the doctor ruled out lichen sclerosus? Vulvodynia-like symptoms can present themselves when girls are really young, but usually don't get diagnosed until later in life.

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