there's other people like me?!

Hi all,

I've been having these problems for about 3 years now, but have always experienced a bit of pain 'down there'...

I've been to see a number of different GPs, and in the last half year have finally been referred to a consultant gynaecologist after so many 'urine infections', 'thrush' and 'hypersensitivity'. I used to be given any type of antibiotic as a quick fix, as well as seeing many out of hours doctors and walk-in clinics without getting anything out of it. I was also treated for thrush numerous times. A GP I saw in Leeds decided to try everything and said I had 'hypersensitivity', putting me on a steroid cream, a thrush tablet and a mild antidepressant all at once. After I moved away from Leeds this all stopped and everything started again.

In the past, my pain has come after sex, during sex, after a night out, from dehydration, lack of sleep, being too hot... or sometimes from nothing at all. I used to get what I thought were extremely painful urine infections which occurred pretty much with no warning at all, during which time I would down bottles of water and cartons of cranberry juice.

Now that I have finally been referred to a gynaecologist, I had a preliminary appointment where she took a specimen from me and called it 'thrush'... but thankfully she also said she bet I had heard that a hundred times before (which I had).

The next appointment was a biopsy.... which I have to say was more painful than I could've imagined. I think I squeezed the poor nurse's rings really deep into her fingers when the needle went in!.. But, the reason for having this biopsy is to determine if I have lichen schlerosis (a skin condition), or vulvodynia. After reading up on both of the conditions, I'm certain it's actually vulvodynia, but hope it's lichen schlerosis, as I will be kept on a steroid cream whenever I need it. If it's vulvodynia, the dr has told me that I will be put onto a mild antidepressant to stop the nerve endings from firing, but I'm not sure if either are really permanent solutions, and I'm not sure if I ever will get one.

My partner finds my condition very hard; just last night we tried to make love and couldn't because of it all got a bit too sensitive for me. Not only this, but I had to jump out of bed straight away to wash to make sure I wouldn't feel even worse in the morning and have to miss work (which is only my 2nd week in a new job, so wouldn't look good!) We go through periodic dry spells where he is afraid of hurting me, and I feel a lot of guilt about my situation. Also, when we do try to have sex and it fails, he says he isn't annoyed/frustrated, but his eyes say different things to me - he cannot stop thinking about his lack of orgasm, which he has admittted to me on more than one occasion! You could say our sex life is quite pressured a lot of the time.

It's great to be able to find a forum like this online, and hopefully I will similar experiences to some of you which will be a help to all of us. Please let me know how far along you all are, and for us to be able to offer some help to each other if we can...


Julia xxx

hey u! thanks for sharing ur story! It almost feels like a bit of a relief when u type it in black and white!

Sounds like you've been/going through the mill to hey? sucks big time!

with your urine infections do they say its bacterial cystitis or interstitial cystitis?

So are you in Leeds still? we are certainly spread around the uk/us on here! Im in Gloucestershire.

Im at the stage where ive seen 7 specialists with no answers. So am starting from scratch with a new gynae. Ive got the biopsy appointment tomorrow to look forward to. Had biopsies taken last yr from inside my vagina but they didnt show much apart from a high level of inflammation. The gynae (a professor!) gave up on me and referred me to a new one (one thats having a good old prod around tomorrow...oh joy! Luckily Im being put under so I wont need to stop the blood flow of the poor nurses hand, or leave ring indents!



Its soooo hard on relationships having this condition (whatever it is). I split with matt a few weeks ago. But I have to admit it wasnt the lack of sex with matt that caused it I think it is because I dont deal with it all very well at all. he couldnt support me with my low mood, feeling of despair etc. He didnt know what to do so he took the easy way out. I wish Id been honest with him from the start how I felt but I used to put a front on (a rather convincing one!). I dont think we would have lasted so long.

I know this prob sounds crude but have you considered anal sex (I hate writing that!! ) I think it was good in our relationship as it made us closer and theres absolutely noooooooooo way I could have sex.

better go, dinners ready! write more later chick xxx

Oh Naomi! How funny! Sorry, it just is! I was going to suggest the tamer option of oral sex!!

hahaha! well I thought I could put 'Bum Love' but thought I'd stick to the technical jargon!

oh yeh, and there is oral sex like Sarah suggests!

Hi and Welcome Julia!!! Yes there are women like you! its cool to be able to speak to others with the same conditon otherwise it feels really isolating. Pricisely why I set up the forum.

Ive never had a biopsy sounds scarey u are really brave!!!

Hahaha girls I will now suggest a bit of hand love.....lol see there are many ways of errrr given the fella sum action haha

Shuts em up moaning anyway lol

Sebby
xxx

Yup the moaning bit's definitely the hardest!... as when he is hard, and not getting any.. he's got a pretty one track mind!... perhaps we should be trying more different things. I saw a book advertised on one of the links I found on this forum about having non-penetrative sex and how to keep it interesting.

7 different specialists?! I feel like I've experienced hardly anything yet if that is the way forward; I really do wish you all the best of luck with lucky number 7, and the biopsy

have any of you ever tried eastern meds/acupuncture? I've heard it can help but I'm not sure whether to keep holding out on the western side of things!

http://uk.askmen.com/dating/love_tip_300/314_love_tip.html

found this link on a man's website lol

sex without penetration

hahaha in the phone sex section it actually says 'but unless she starts it, stay away from anything involving family members, animals (don’t even go there)'

WTF!!! Like people need to be told to avoid this!!!

wicked I've had a quick look and i'll show my man.. carefully.. he has a bit of a thing about me reading erotic stories, and sex toys and the like, calling it 'cheating', so there's a bit of work to be done to make it feel like we're doing this for both of us.

I'm still thinking about the acupuncture too.

Anyone know any decent (but not too heavy) books about all this? I came across the one by susanna caysen but wondered if that was any good?

Hi Julia,

Well if you are doing it together it cant be cheating can it! I mean you could always write your own erotic story involving you and him!

Or just find one online copy it into word and change the names of the characters to your own names! hahaha well its a thought...

http://www.asstr.org/~Kim_Couples/

http://www.smolderingembers.com/love-making-stories.html

just found a couple of websites, not read 'em yet myself...but I will have a look later...it will kinda distract me from my pain clinc preparations lol

They are not seedy sites and are writen by women for couples

Sebby
xx

Im so glad someone else brought up anal sex (henceforth known as bum love- sounds way cuter ) I had enjoyed this as part of my sex life prior to vulvodynia, and since have had a few enjoyable bum love experiences (cant help but smile while typing that), but have found that it has become uncomfortable. perhaps because the pain in the vagina has worsened and is exacerbated by the anal penetration, or maybe because im so used to sex being about pain i tense up. Has anyone else had any experience of this?
what is everyone else's experience of the area of pain- has it changed or stayed the same? is it in the same spot always or sometimes different? Just wondering what the deal is for you ladies.

I have constant raw, soreness, inflammation of the vagina, internally and externally. Sometimes more so externally depending on the heat etc I think, def' the more I do physically makes me more inflammed and sore. It feels like a hideous yeast infection. I'd always had yeast infections and UTI's where sex is involved. Infact Id be healthy now Im sure if I was a virgin right now!!!

I have never had the stabbing pains typically associated with vulvodynia, or the associated bad back etc. Never had problems with tampons or vibrators before the above took hold. Just when mens willys were involved...A few of my girlfriends and even an ex said I was "allergic to willlys" grrrrrrrrrrrrrrr

Lisa, before I split up with Matt a few weeks ago we perhaps made 'bum love' once every few weeks (I used to ask him if he'd like to experience it and his reply was to literally peg it out the door leaving fire tracks!, of course I didnt mean it but it made him consider that it might be as slightly unpleasant feeling at times!!, so fortnightly proceedings was ok for him to accept!). It was uncomfortable at times but as long as we made sure heaps of lube was involved. My heart wasnt in it though and I would have preferred not too, was doing it for his sake not mine...I think it was when my low mood/depression really kicked in at the start of this year. I def suggest trying diff lubes, I tested out 10 before I found one that was suitable. Coconut oil is also good (can get it in tubes from health food shop in the fridge) as you can use it as a massage oil too xxx

I'm just the same Naomi with the raw skin being the problem and where the pain is located and mine looks like a really bad yeast infection too, like a layer of skin has been peeled off in fact.

I'm not a bum love kind of girl if I'm honest so my other half is going to have to make do with oral while I sort out what to do!