Advice for living with vulvodynia and having a relationship

Hi All

I've recently been diagnosed with vulvodynia. I've had symptoms on and off for almost 10 years, have been tested for EVERYTHING under the sun - all to tell me nothing is wrong. My doctor is very sympathetic as she's seen it at it's worst (her words described it as : red, inflamed, very angry looking)
So, due to always being over-sensitive and having symptoms triggered by very little (sometimes even no) contact, I have generally avioded relationships.

But now I'm a little older, I'd like a relationship and possibly start a family.

Has anyone experienced themselves, or had a partner with vulvodynia? If so, how did you both cope (mentally as well as physically/sexually) with the situation? Do you have any advice for me when talking about it with a new partner?

I'm booked in to see a specialist, but that isn't for almost 6 months.

Thanks in advance,
Pert

For info on vulvodynia:
http://www.vulvodynia.com.au/welcome.html

(( Please keep this a "help/how to" guide, rather than off-topic discussion or sympathy posts. Thanks))

I never heard of that. Wish you the best!

That's a new one for me as well. Thanks for posting the link with some info on it.

This is the first I've heard of this disorder, but as a single guy, I can tell you that I personally think it is best when a woman is up front with any man she is pursuing, regarding medical conditions such as this. I've had that happen with a woman I was going out with, but I was fine with it because I wasn't blindsided by it, I knew right from the get-go what she was dealing with, and I was fine with it.

I might have been a bit annoyed had I found out a few months into it, only because that would mean she wasn't up-front with me about everything, but that wasn't the case. I don't know if its something you'd mention on the first date, but definitely don't hide it until a month or so later. I don't know anything about dealing with the condition itself, unfortunately, but I hope what I said helps when it comes to dealing with anyone you want to start a relationship with.

Vulvodynia is an unexplained burning, itching or painful vulva. In the past it was treated with drugs, diet and sometimes surgery. Lately, there are new treatments that I am not familiar with. However, your specialist should be able to help you without going through the horrors of the past treatments. It has been demonstrated to be highly treatable and you should be able to go on with your life, relationships, etc.

Good luck.

How has it been?

Pert, how has your progress been in the last few years with your vulvodynia? My SO has been diagnosed with it as well. She had been in pain for a number of years before we learned about vulvodynia. Since then we've both learned a lot and find it hard to imagine some of the things we tried (or were told to try before).

I've been a lurker for several years now, but this is my first post. It seems like you are one of only a handful of people who post here who understand vulvodynia. I hope you have some information on things that helped you that might be useful for me (and others).

*****

Gigamen said:

Pert, how has your progress been in the last few years with your vulvodynia? My SO has been diagnosed with it as well. She had been in pain for a number of years before we learned about vulvodynia? Since then we've both learned a lot and find it hard to imagine some of the things we tried (or were told to try before).

I've been a lurker for several years now, but this is my first post. It seems like you are one of only a handful of people who post here who understand vulvodynia. I hope you have some information on things that helped you that might be useful for me (and others).

Click to expand...

Feel free to PM me if you want more details.

I had physio for about 18 months before "snapping" (ie I came home from the specialist gyno after she suggested upping my dose of endep - which is an antidipressant. I'm NOT depressed, it just hurts when I fuck. ) and I asked to be referred for surgery. My Surgeon/Gyno was of the view that "vulvodynia" is a load of rubbish - all it means is that the doctors don't know what to do!
So - treatment I underwent :
- 6 months of diflucan (the thrush pills) one and week, for 6 months.
- 18 months of physio; using glass dialators at home to stretch daily and seeing my physio every other week. My pelvic floor was VERY over active - the muscle felt like bone, with little improvement during physio treatment. 5 months after surgery, TOTOALLY normal.
http://i44.tinypic.com/2ptrnk9.jpg
- "Fentons Procedure" in July last year - which is surgery where they cut the extra skin at the opening of the vagina. I basically had an extra thick "band of skin" which didn't like to be stretched.

I still take endep, 10mg at night, but for my IBS (basically it settles my tummy cramps and helps me sleep) and I have my ovestine cream (love it, helps with the sex drive and "plumps" the skin) but they didn't really help with the pain.

Unfortunately, I broke up with my boyfriend (as he cheated) a few months before my surgery, so I've not found a suitable candidate to test out my New Girl! What I can tell you is that results were NOT instant. It took about 6 months for things to settle down. I've gone from a size 3, to a size 5 dialator. I have side 6 and 7, but they're still hard to insert without pain.

So, in short, surgery is a 80% fix. The other 20% will have to come from lots of foreplay.

//sorry for any typos, I'm tired, can't be bothered checking to carefully.

I'm glad to hear things improved for you, and I hope you get to test it out soon

I'll PM you for more info.

As someone who has had medical problems off and on over the years with no preactical help from medical professions I would just like to say that any faith i had in them quickly disappearred when i found out that i was solving a lot of the problems myself once i had a handle on the initial symptoms.(does that make sense?)
Pert? with you was there any constant with the problem?did it always happen after sex?or did it depend?was it a reaction to any lubrication or is it an actual physical problem?

scotsmitch2001 said:

Pert? with you was there any constant with the problem?

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I'm not quite sure what you're asking...other than what is already in the thread. I think I started another one at another time too (??)
Vulvodynia and vaginismus - over active vaginal muscles and over sensitive vulva (nerve pain). Basically any stretching feels like a burn.

scotsmitch2001 said:

did it always happen after sex?or did it depend?

Click to expand...

Using a dialator or having sex used to make me sore and red for a week or so. After physio it was reduced down to an hour. After the surgery, pain stops as soon as the dialator comes out, but still hurts to stretch (and stretches more than before)

scotsmitch2001 said:

was it a reaction to any lubrication or is it an actual physical problem?

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Not at all. Love lube, the more the merrier!
I'm not allergic to anything, thank goodness!

A good friend of mine suffers with this. This is what she has been advised:

- to get plenty of sun on it(!)
- That much of it is to do with stress/ it's "in her head."

She has seen a bunch of specialists and they all say the same thing. I'm sad to say that she's no closer to having comfortable sex. She told her current partner when they first began dating and while they have been together for a few years now, it has still caused various issues.

Sorry, that's not a lot of help, is it? Just wanted to share her experience of it.

Firebrain said:

A good friend of mine suffers with this. This is what she has been advised:

- to get plenty of sun on it(!)
- That much of it is to do with stress/ it's "in her head."

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Oh my! What TERRIBLE advice! Utter rubbish!

For years I was told by boyfriends and friend that it was in my head - I beleived them too. Then, years later, I happened to ask another GP - she send me straight to a specialist-gyno and the specialist-gyno sent me to the specialist-physio.
It changed my life.

Sunburn on your vagina would be a terrible thing! Most women tend not to go flashing their vagina's to the sunlight, so I'm not sure how that is supposed to happen.

PertPerth said:

Oh my! What TERRIBLE advice! Utter rubbish!

For years I was told by boyfriends and friend that it was in my head - I beleived them too. Then, years later, I happened to ask another GP - she send me straight to a specialist-gyno and the specialist-gyno sent me to the specialist-physio.
It changed my life.

Sunburn on your vagina would be a terrible thing! Most women tend not to go flashing their vagina's to the sunlight, so I'm not sure how that is supposed to happen.

Click to expand...

I know - she is very frustrated by it all. I think it must just be one of those things, so to speak. It doesn't help your partner to think that it's all in your head, obviously!

There is nothing worse than when you go to see so-called specialist and you are not beleived.

I'd heard of vulvodynia before but that's the first time I've heard of anybody else who's had experience of a Fenton's procedure!

I had to have that done in the late 80s to correct a too narrow vaginal opening. Labia were fused together a little too high which meant I'd endured about a decade of painful sex before getting it sorted. Patient boyfriend used to call me a 'born-again virgin' as I'd tear almost every time we had intercourse.

I'm glad it worked out for you. I didn't have such a good experience of it as the gynaecologist who did my surgery decided to do an over-enthusiastic job and cut through most of the muscles as well as the skin. I went from being too tight to being too loose. It was a horrible experience! I needed two further surgeries to repair the initial Fenton's.

Fortunately that seemed to sort things out physically. The emotional fall-out from that took a while longer to heal but I fixed it myself with patience and time.

ClootieDumpling said:

I'd heard of vulvodynia before but that's the first time I've heard of anybody else who's had experience of a Fenton's procedure!

I had to have that done in the late 80s to correct a too narrow vaginal opening. Labia were fused together a little too high which meant I'd endured about a decade of painful sex before getting it sorted. Patient boyfriend used to call me a 'born-again virgin' as I'd tear almost every time we had intercourse.

I'm glad it worked out for you. I didn't have such a good experience of it as the gynaecologist who did my surgery decided to do an over-enthusiastic job and cut through most of the muscles as well as the skin. I went from being too tight to being too loose. It was a horrible experience! I needed two further surgeries to repair the initial Fenton's.

Fortunately that seemed to sort things out physically. The emotional fall-out from that took a while longer to heal but I fixed it myself with patience and time.

Click to expand...

My doctor was a little too careful - I still have a bit of a "band" of extra skin (hence I'm now looking forward to having a baby to stretch the crap out of it!), but after hearing you had multiple surgeries, I'm glad!
The nurse who booked me into the hospital had it done - it was a lovely surprise! She said "Oh, I had that done years ago. You'll be right in no time at all!" I certainly felt a LOT better after hearing that!