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» I'm sorry im rambling
Today at 5:49 am by Jet227

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

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 …

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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 …

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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

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 …

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New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0


My notes from the VPS patient conference

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My notes from the VPS patient conference

Post  ButterflyLiz on Tue Dec 20, 2011 9:56 pm

On Saturday 11th December I attended a day-long conference in London for vulval pain sufferers, organised by the vulval pain society. This was the second such conference they’ve run and the first that I’ve attended. I thought I would share my experiences of the day and various things I learnt. My notes are by no means comprehensive but consist of the things that stood out to me. I’m sure the VPS will publish more detailed notes on their website (www.vulvalpainsociety.org) in due course.

I’m not sure exactly how many sufferers were in attendance but it must have been over a hundred. This was a real eye-opener as to how many people are living with this problem & reassuring, if sad, to hear other women recount symptoms & experiences similar to my own. It was also nice to see partners in attendance.

There were a few sponsors of the event who had stalls in the foyer. I came away with a nice number of free samples & lots of information packs! These included:

• Info on dermasilk intimo underwear – silk based undies with an anti-microbial core which have been shown to reduce the symptoms & instances of thrush & lichen sclerosis. A bit pricey but apparently available on NHS prescription. Bought myself a pair but only worn them once so far so hard to know if they’ve helped! www.dermasilk-intimo.co.uk

• Aquamax – an alternative to aqueous cream which doesn’t contain SLS – apparently this irritates some people. Haven’t tried my free sample yet.

• A service called “body tension release” which has apparently helped some vulvodynia sufferers, but reading the success stories these mostly seem to be people who habe previously had some kind of injury to the pelvic area. www.bodystressrelease.org.uk

• “Yes” lubricant – an organic lube available in both water & oil based versions. I’ve used this before and found it quite good so was happy to get some free samples!

• Natracare cotton sanitary products – have heard of these before but never got around to trying them. Will give the sanitary towels a go. They’re meant to reduce irritation compared to plastic-based products.


Talk 1: “Vulvodynia – making the diagnosis, drug taking & UK frameworks of care” by David Nunns, FRCOG

• After about 3 to 6 months of having chronic pain, there are changes to the brain and skin which keep the pain going.

• The British Society for the Study of Vulval Disease (BSSVD) have produced evidence-based guidance for managing vulvodynia. You can find these online.

• David mentioned tramadol which is a strong painkiller. This can be used for nerve-ending pain.

• Apparantly a Company called Miller & Miller produce 2% lignocaine, but I can’t find this anywhere online.

• Gabapentin cream has helped some women and is being made in Cardiff. It is up to any given healthcare professional to obtain it.


Talk 2: “Treating vulval skin conditions” by Dr Karen Gibbon, consultant dermatologist

• The pH of emollient creams can very from 4 to 8 and the more alkaline can cause irritations.
• Emollient creams provide insulation against moisture loss, moisturise and also reduce the desire to scratch.
• Many gels have alcohol in, which is not good for the vulva.
• Anything which contains urea is not good for broken skin.
• Those of us with MC1R gene polymorphism are more susceptible to pain & stinging because it influences the way our skin reacts to things (including sun exposure).
• If you are prone to stinging, you may get on better with ointments rather than gels.
• In general, the fewer ingredients any lotion or potion has the better as far as the vulva is concerned.


Talk 3: “Pregnancy & vulval pain” by Maggie Tomlin, midwife

• Maggie reassured us that multiple vaginal & vulval exams are not necessarily required throughout pregnancy. There are other ways to monitor things.
• Maggie reminded us that many women experience vulval pain after giving birth & that it may not be solely down to the vulvodynia. Some women find that pregnancy & childbirth improve their pain.


Talk 4: “Overcoming sexual problems associated with vulval pain” by Leila Frodsham, Consultant gynae & psychosexual therapist

• Silicon based or oil based lubricants are best
• “Durex play – tingle” lubricant provides a slightly anaesthetising effect for some women, however makes others burn (I bought some to test when I’m feeling brave!)


Talk 5: “How can clinical psychology help?” by Dr Michelle Conn, psychologist

• 70% of long-term pain patients experience depression and/or anxiety
• Michelle tries to teach patients ways that they can live alongside the pain & challenge unhelpful thought patterns
• Michelle pointed out that people in general experience distress when their expectations are much higher than the possibilities. Therefore it is worthwhile to try and bring expectations down to the level of what is possible.


Talk 6: “GPs – a first port of call” by Dr David Lloyd

• The placebo effect is strong – in tests about 30% of people feel better when taking a placebo, even if they know it’s a placebo (his conclusion? We should all take sugar pills!).

• Most people are vitamin D deficient and there is evidence that this is especially true in patients with chronic pain. He recommends patients with vulval pain take between 1000 to 4000 units of vit D per day. I was quite alarmed as this is much higher than the RDA but feel better after finding this very thorough report that I found online - http://pain-topics.org/pdf/vitamind-report.pdf

• Above 75 ng / ml is a healthy Vitamin D level. I’m going to have mine tested & will keep you posted on the results. I predict mine will be lower, as anti-epileptics break it down faster, and I’m on pregabalin!


Talk 7: “Contemporary approaches to treating vulval pain” by Catharine Mackenzie of the vulval pain society

• Catharine updated us on the latest research being done into chronic pain & vulvodynia in particular.

• A recent study conducted on mice found that giving them, and then treating, three successive vaginal yeast infections caused vulvodynia symptoms in 40% of the mice once the infection had gone. When the infection was left for fourteen days and then treated, 86% developed vulvodynia symptoms.

• You can read the abstract for free here - http://www.ncbi.nlm.nih.gov/pubmed/21937756?dopt=Abstract

• Magnetic brain stimulation for pain is being trialled at Liverpool University (this was recently on the telly). There is a 40% success rate. Temporary relief with few side effects.

• Genetic treatments are also being explored. The gene HCN2 has been found to play a role in chronic pain.
ButterflyLiz
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Re: My notes from the VPS patient conference

Post  skippypie23 on Wed Dec 21, 2011 4:37 pm

Thank you for sharing all this info Liz Smile
There's a lot of new info there for us to look into.

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Re: My notes from the VPS patient conference

Post  kirsty on Sat Dec 24, 2011 5:22 pm

I almost signed up for the conference and was wishing I had gone, so thanks a bunch for the information...

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Re: My notes from the VPS patient conference

Post  ButterflyLiz on Mon Dec 26, 2011 4:27 pm

No worries, I think it's important to share all the info we manage to glean! I'll probably go again next year if anyone fancies joining me.
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Re: My notes from the VPS patient conference

Post  itchyandscratchy on Fri Jan 06, 2012 7:06 pm

Thanks so much for sharing all this! From this info it's looking likely that recurring yeast infections triggered it, although I also have some nerve or muscular issues which I'm yet to have investigated...

Will look forward to looking into some of the products here when I've got more time on my hands!
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TY

Post  AroraNightfire on Sat Jan 21, 2012 8:52 pm

I would love to attend a conference like this someday.

The physical therapist I had last year told me that slippery stuff lubricant is one of the safest. Its water soluable. I find it better to keep it refrgerated. Cold helps my pain and discomfort.

I tried gabapentine cream the end of 2010 I couldn't stand it. It left my vulva feeling raw and clammy. I started soon after on gabapentine pills increasing 300mg a week until I reached the theraputic level which is 3600mg. My anasthesiologist suggested I switch to 600mg of lyrica a day back in sept2011. It works faster and 2 pills sounds better than 12pills of gaba a day.

I can't wait till I meet people on cape cod mass who suffer. I think the cape needs a support group.
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Re: My notes from the VPS patient conference

Post  ButterflyLiz on Sun Jan 22, 2012 11:39 am

It was a really good thing to go to, to meet other people & feel like people in the medical community do actually give a stuff, too. I hope you manage to find other sufferers near you, maybe you could make a few leaflets & ask your doc to distribute them to anyone else with vulval pain that they see, or to leave them in the waiting area or something.
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Re: My notes from the VPS patient conference

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