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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 …

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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

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


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.
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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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