At war with my own body

Hi all,
 As you can see I'm a new member. I found this forum looking up support groups and thought it might help to talk to people who get it where nobody I know might see. I'd been comparatively pain free for a while but it has flared up again and I can already feel myself sinking out of the little bit of positive I had built up.

I first started getting a bit of the pain when I was 16, didn't really register what it was and I was treated for UTIs a few times. It kept coming back more and more often and by the time I was 18 I had a spot just under my vaginal opening which is absolute agony to touch. It's only fairly small, and sometimes it is only sore on contact (I think it's more I'm used to it than it isn't hurting at all), but other times the pain is unbearable agony that makes going to the bathroom, sitting, lying, walking, anything just sheer agony. I went through a year of different GP tests (UTI, yeast, STI etc, the anti fungal cream left me screaming) before being referred to a gyno. The first one was pretty awful and used a larger sized speculum despite me being in pain and a virgin (to "prove" I wasn't tight) and was generally not very sympathetic, all I got out of that was a confirmed PCOS scan and diagnosis and some not overly nice comments about how obvious it was I had it from my appearance. I didn't really want to go back after that but eventually saw another lady who had no clue, then finally after a lot of fighting saw somebody else. I was tried on tablets to try and block the pain signals (gab something and amitryptiline (sp)), birth control, steroid cream and topical lidocane, none of which helped, and to sum it up was eventually told I needed to exercise more to lose weight (i'm hardly large and even walking is agony) and that they didn't know how to help me. They also said I wasn't a typical case since the pain is permanently there on touch then flares up as generalised. :/

I'm now 21 and since then I haven't seen anyone. Being poked and prodded and given tablets that mess with my depression just makes me feel worse mentally and it takes weeks to see a normal doctor let alone get a referral so I have been trying to cope. That had been going better, car journeys in particular cause flareups but as long as I don't overdo movement and am careful I get bigger breaks than I would otherwise. I'm single now anyway but since this flareup started it's really hit me, I don't even dare try to date anyone and how much it hampers me has all come back. I don't really have a social life because I struggle to go out and fear it starting up when I do and my family that do know are the "just get on with it" brigade as though I can help being in agony or how bad it makes me feel. Being in so much pain its driven me to becoming suicidal in the past is bad enough. I just feel really crappy and need to be saying this to people who don't think I'm mad or judge me.

EDIT: I should probably say what methods I am using. I'm only using 100% natural (mostly homemade) shampoo, soap, everything now. No SLS or anything else that may remotely irritate. Cotton underwear, doughnut cushion (makes it worse sadly). Healthy natural diet, vegan. Baths with oats when it flares up help a bit sometimes. Painkillers never made the slightest difference and I try to avoid that stuff anyway. Cool water rinse when urinating during flareups. Lots of water daily, no citrus anything. I think that is everything, not slept all night so my brain is kinda fried.

Hello dreaming clouds,

Do you only get pain in one spot when touched or is it Ther all time aswell? Or a mixture on different days?

I get provoked pain but I can get an ache and pain all day if I wear too tight trousers or Ther is too much pressure (down Ther) im newly diagnosed but I will say since being diagnosed my symptoms have reduced with the methods I am using.
I use an organic vitamin e oil everyday and night on the area that gives me pain, I use lidocaine in eve after a bath. In the bath I am only using aqueous creme and vani soap to wash. And I wash my hair over bath not when I'm In Ther. I'm also taking vitamins, fish oil, magnesium and calcium citrate. I only wear leggings to work and at home a lose pair of shorts and no knickers. I wash my knickers seperatly and use non bio washing tabs and no softener. Since starting to do all this about 3 weeks ago my pain has reduced. It's not gone away though but I can feel it's getting better each day. Maybe you should (if u aren't already) use my methods and see if they work for u? I know everyone is different so I don't wanna get your hopes up but I got my ideas from different girls on this site. U just gotta find out what works for u.

I'm sorry you've had such rubbish doctors and feel like u don't want to see anyone else now and are feeling low at this point. It does help to talk to women on here who going through same or similar thing.
I would go back to your GP and ask to be refered to a vulva specialist or a gynocolagiest. I know waiting times can be long but best to get on the list as soon as u can. Not all doctors will brush u off u gotta keep trying different ones till u find one who listens. My gyno is nice she wants me to go on ami beg of nov so depending on how my symptoms are then I hope to start on a low dose. How did u get on with ami?

I hope you find your solution soon x

Also you need to try and work out why u get flare ups, that's a good step towards finding out what will help reduce your pain. Stress at work? Clothes u wear? Change in washing powder? It could be anything. Somthing has cause this flare up for u this time. My last bad flare up I worked out was stupid jeans I wore to work. Too tight! I was in pain all day and eve and next day. I thrown them away now lol and just wear leggings at work.

Hi sweetie
I feel you need to make contact with Alana. She is one of the lovely girls on here and she would have great advice for you as I think by reading your story surgery would be something to think about. I believe yours can and will be fixed by going down the right road.
Kindest thoughts sent your way