MY STORY GETTING DIAGNOSED!!! &what helps??

I NEED TO VENT SOOO BAD.

The first flare up I can remember I think I must’ve been around 9/10 years old, I’m 19 now. I woke up in the middle of the night bursting for a wee, next thing i know I’m peeing razor blades and can hardly bring myself to wipe the area. I was only young so I had no clue, my Mum suggested I just needed to wash myself properly. I’m not suggesting I never washed myself, I think she just didn’t really know what else to suggest.
What parents think their girl at 9 would be suffering with a chronic pain disorder? I used to just stand in the shower with the shower head freezing cold to try to soothe the burning, hardly subsided the pain but there wasn’t much i could do. This went on for a few weeks then miraculously stopped.

This stopped for a few years until I had turned 15, everyone was having sex and I was desperate to, so I met my first boyfriend. I knew it would hurt, but boy did it hurt. When I told my best friend at the time how bad it hurt she said I just wasn’t relaxed and was thinking about it too much. I didn’t just have pain during, the pain after was unreal. I would be sat on the toilet for ages trying to urinate for only dribbles to come out, I couldn’t wear my underwear, I couldn’t close my legs, it was just horrific. I knew this wasn’t normal. Having still been underage I couldn’t bring myself to tell my mother about my experiences afterwards or during, she’s very old fashioned in the sense that ‘sex just isn’t for everyone’.

I continued having sex thinking it would just disappear, and just putting on lots of lube and vagasil before hand. I don’t think my boyfriend at the time was too understanding as I was still only young and he was a little older than me, his interests were elsewhere. It became so painful I couldn’t bring myself to even have sex, so I decided to try find out what was going on.

My first doctor that I met took a urine sample and said I had a UTI. FINALLY, I can just take some antibiotics and this bad chapter will just all be over… I wish i knew how wrong i was at that point.
My symptoms were fine for about 3 days, then all started again, I finished my course of tablets then went back.

CHLAMYDIA. The doctor said, she said I must have that because my urine came back with no UTI’s showing anymore, she asked me to get tested so she would be able to prescribe me the treatment. I was freaking out, I had only had sex with one person, how could I have an STI. I asked my boyfriend to get tested he came back clear, I got tested I also came back clear.. This doctor Ive been referring to is probably the worst doctor I have EVER seen. At such a young age of course I was going to listen, I had the idea that whatever a doctor said was true.
So with my negative results I went back to her where I was then told ‘even though the results had come back negative I still have the big C’ this is the first point I think I had doubts that this bitch didn’t have a clue. So I was prescribed the treatment, took it, and surprise surprise same symptoms.
I started to struggle with my relationship, my work, paranoia, friends etc.

I didn’t bother going back to the doctor after this I was so low, but one night the pain was so bad I just had to go A&E. I think this was the night I told my parents the pain i had been going through, but I didn’t say about the sex, I was still 16 and was still very embarrassed. My only coping mechanism was to have a hot bottle held against my area, without the cover, simultaneously burning the shit out of my thighs. I couldn’t move from the position so my Mum called 111 for me (help line in the UK that can suggest steps of weather you need to go and see A&E or an on call doctor). They had booked me for an appointment at the hospital, I met the loveliest doctor, she took another UTI test and it showed as positive, I resented my first doctor thinking that she had just not had a look at other UTI’s which is what this new doctor had told me. So back to square one, another course of antibiotics, and again not easing with my symptoms.

I can’t even remember how many UTI tests I’ve had in my life and I’m not even going to mention all of them, because this is all that the doctors ever threw at me. Pee bottle after pee bottle. I couldn’t see this doctor again as she only worked at the hospital, so reluctantly I went back to my Doctor surgery but asked to see a new doctor.

Whatever Doctor I have seen have always been adamant for me to take a urine test, I was sick of them. I’m no doctor but I FUCKING KNOW I DONT HAVE A UTI OR STD. ahem.

Now what Doctor number 3 had told me I couldn’t believe. ‘I have been sexually abused this is why I am the way I am.’ Right.. Okay.. So my one boyfriend who I have met about a year ago has sexually abused me when I was 8, and thats why I had my first flare up? Understandably she couldn’t answer me, I was so insulted. I was referred anyway to a psychosexual health place clinic thing for victims, which had a 6 month wait list as it was, my mum said I should go anyway even though she knows I hadn’t been abused, regardless I didn’t, I just knew that wouldn’t help me. Needless to say I wouldn’t be seeing her again.

I decided my next stop would to go to a sexual health clinic because I started to convince myself this was sex related. The Lady was also nice, I told her my sexual history, my symptoms etc, a few blood tests later, she came back in the room 10 minutes later and said she couldn’t find anything. So I got onto the medical bed as she wanted to do an internal exam, I hadn’t had sex for a few weeks at this point so the pain was a bit more manageable. I don’t know where she touched but I couldn’t deal with it, all she had used was a cotton bud to touch the outside of my area but it was too much, I could tell she thought I was exaggerating/putting the pain on, I didn’t care I knew i wasn’t lying. I got off the bed and got dressed and I was given her diagnoses of ‘I don’t know’ you fucking what? I just wanted to go home after that and get a hot bottle, I was given a bit of numbing cream though to put on before sex to numb me called ‘Lidocaine’. This little bottle had given me so much joy, I could have sex, I could urinate normally, etc. I was happy, I still got the pain but not as bad.

Few months down the line I was worse than ever, I couldn’t have sex again, my boyfriend cheated on me with god knows how many people, guess thats what you get for not being able to have sex, I always find that that happened for the better. At least I no longer had the stress of feeling like I HAD to have sex in order to stay a loyal girlfriend.

Anyway I saw a new doctor at my surgery, I think this was Doctor number 4, I told her everything and asked for some more Lidocaine, where she then told me I should have never been prescribed that as it can make me lose feeling completely. I started freaking out, how could something that gave me relief cause something like that and why was i even given that??? She said “I will help you..’Ahhh a sigh of relief. ‘I just need you to pee in this bottle’ NO NO AND NO. I refused I said I do not have a UTI. Instead she referred me to a Gynaecologist and to have a Ultrasound on my bladder.

Long story short my bladder was completely fine, and all my gyne found was a bit of discharge which is normal. So whoooooo discharged back to my doctors. I think I saw all the doctors at my surgery which are about 11, which all said I had an STI, UTI, sex just isn’t for me, I was abused, I don’t drink enough water, I’m not ready for sex yet, I have too much sugar in my diet, I don’t get enough sleep, It’s all in my head, others have it worse, all sorts of ridiculous shit. I had been given so many pain killers/antibiotics. I strongly believe the amount of antibiotics I was prescribed has made my condition worse.
I question why some of these people were even given a PHD.

I had even gone to A&E a few times to just be sent home, given a bit of morphine, gas and air and be told not to come back because they don’t know. This was going on for a good 3 years since I was 15. There was 1 doctor at the surgery I hadn’t seen because each time I had gone to make an appointment he was mostly on holiday, I like to believe this was some sick way of the fates making me wait for the best doctor till last.

Honestly this man is a saint, I don’t understand how I had met him so late. I had gone in the first day I made that appointment with him, I think most appointments down there are at a 10 minute interval, I must’ve been in there for about 30 minutes. I went in with such an attitude, I was fed up, I was 18 and felt restricted from everything. My first words were please don’t give me an UTI test but.. and explained everything. He looked at me and said I had vulvodynia. I had had no tests for this, i had never heard of it, I was so confused. He pulled a chair next to him, and he showed me some things on the computer, like forums/help groups. He prescribed me 3 different types of lidocaine, WHICH DOES NOT MAKE YOU LOSE FEELING. I felt listened to, I felt like I was going to be helped, for the first time in years. I cried and cried, I’m not sure if these were tears of happiness that I had finally got a diagnoses or with sadness that it has taken this long, or even anger when I found out this was incurable. I was the 3rd girl he had seen within his 34 year career as a doctor with this, he said to make a separate appointment with him again and he will do some referrals. I got home and researched into the whole disorder, I wasn’t alone, thousands of girls with the same problems, same symptoms, same everything, speaking to these girls gave me massive relief. What no one had understand what I was going through, all these girls did, had all been told the same things as me by doctors.

THIS IS THE MOST FRUSTRATING THING!!!!

what does everyone use to help cope with flares?

ive tried in total, amitriptyline, nortriptiline, coconut oil, tens machine, gabapentin, pregablin, lidocaine ointment and cream, hormones, baking soda, ice, hot bottles, vaseline but nothing works. I've seen some bits about dilators, any recommendation?

I'm glad you've finally got a sensible diagnosis. Rather than me retype a lot of info, my story is here if you want to read: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement . The title is not entirely accurate as I'm not over a year into a significant improvement

It looks like you've tried a lot of the same things I tried in the past. In my opinion it's the things to avoid (fragranced products, certain foods/drinks etc) that are as important as the things to try. In terms of medication, I finally found success with duloxetine. You could ask your GP for a referral to a pain clinic if he's not already done that. They are specialists in chronic pain conditions whatever the type and cause of the pain.

I hope you find some relief soon. It's a horrible condition and having to deal with it at such a young age must be doubly difficult.

Ive been referred to a pain clinic to only be told 'its all in my head'
Ive been referred now to Womens Hospital in Birmingham to see a specialist, and been prescribed some duloxetine.

I love ''Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. ' Really nice to read

What food do you suggest to avoid?

qwerty1 wrote:Ive been referred to a pain clinic to only be told 'its all in my head'
Ive been referred now to Womens Hospital in Birmingham to see a specialist, and been prescribed some duloxetine.

I love ''Chronic' does not necessarily mean 'permanent'. I'm really not a naturally optimistic person, but I am stubborn. Stubbornness pays with this condition. ' Really nice to read

What food do you suggest to avoid?

Foods/drinks I avoid are: caffeine, alcohol, citrus fruits/juices, artificial sweeteners, tea and coffee (even if decaffeinated), anything else that's particularly acidic. I'm basically trying to keep my urine nice and dilute and not too acidic.