SINCE I WAS 5

Hello.. my names zoe (:
I have been going to the doctors with this problem since I was 5 ! back then they just assumed it was cystitis. as it got older it got more often, I was just when I got nervous and excited and now its a constant pain. im now 20 but I wasn't diagnosed until I was 16 !

Im on Gabapentin but im at the highest dose im aloud. I also have to take co-codamol most days. I Hate it so much as its very hard for me to keep a job because of how un reliable I can be
luckily my current boss is very understanding but I hate letting her down and missing out on the money!

Im currentl seeing a physio who is very interested. she said I can tighten my pelvic floor but it takes a long time to relax? she has given me some exercise to do but this last week ive been off work every day with the pain !

ive not been abused or had any trauma as a child so I have no idea why it started so early. does it eventually just go away? I can not go out with friends because I must know I can get home if I need to and if I get too excited it will come on. ive not been able to drink like a normal teenager and I just want my life back :'(

when the pain is very bad I find the only thing that helps is holding ice on my fufu !!
Has anyone else had it for such a long time? how old where you all when you got vulvadynia?

aww you poor thing,only 19....i'm 26 and have had this crap for 5 months. I'm doing my second univ. but I manage by resting A LOT and taking medication.

you don't say what your symptoms are ....there is a big forum for intersitial cistytis with helpful posts, a lot of the girls there have overlapping conditions like urethra pain and vulvodynia, etc.

ic-network.com

I honestly recommend you to try a urogynaecologist

I used to not be able to drink either than it went away... I have no idea why. I used to get a lot of bladder infections but...? They went away I guess

That wasnt helpful just trying to say you arent alone!

thanks guys its good to know im not alone !
ive had my urine tested by the doctors a lot and no hope

the exercise ive been given doesnt work as ive had 5 days of work off in the last 3 weeks !!

Hopefully next time i go to the physio she will try somthing else
Thnks though !

and it sort of feels like im being hit in the fufu with a spikey hammer thats on fire !! weird description

Dear Zoe,
Sorry to hear u have suffered for so long, I have had problems since I was 21 and I'm 32! I also suffered from cystitis when I was young about 8 ish I think ! Are u seeing a women's health Physio? What type of exercises were u doing! I've seen a women's health Physio for a couple of years now in the beginning it did get worse before it got better, half way through when I could know longer go I saw a Physio on the Nhs and it really didn't work out I didn't feel she listen to what I had to say and it seemed to be a set pattern of treatment,I had three sessions and the pain was so bad!

I stuck with the private Physio and this make a huge difference !

Hope this helps

Kt

Awwah thats good to hear that someone else had it so young!! Yes im seeing a nhs one but she is great, she says we will sort it this year!! Ive been given some dialators to try! If they don't help she is sending me for scans to see if its a trapped nerve! Xx