Purple_monkfish

Well here's my problem... I could do with some advice.

I started menstrating at the age of 10, and since then things have just gotten worse.
By the age of 12 I was having to be on painkillers (ponstan in fact) and having to come home from school because I was in too much pain and flooding (tmi.. but thank god our uniforms were darkly coloured).
For years this continued, the painkillers helped a little... but I passed clots and bled so heavily for two days I felt like I was going to die. At times i'd feel quezy, i'd shake, i'd get hot and cold flushes... these symptoms got worse and worse as I got older. The painkillers eventually stopped working and I had to be put on stronger and stronger pills, till finally I ended up on medication designed for people with IBS! Only able to take 3 of these a day, they did help with the pain.. they just didn't last long enough to make my life easier. I'd stay in bed for the first two days of my cycle and sleep.. because it was all I could do to stop the pain... unconciousness was good.
The pain itself had become excrutiating... unbearable agony that nothing seemed to relieve. The pills made me pretty much numb for an hour or so.. then the pain would start again. I'd be curled up sobbing, completely helpless and unable to even stand. I bled so heavily that going to the toilet gave me the shakes... I believe it was a reaction to the shere amount of blood loss. I bled thick, black clots and bright red blood by the bucket load... having a shower became like the scene from psycho! (what wonderful imagry).
I went to the doctors several times, begging for something to help. They put me on the pill, which made me feel sick. I stayed on it for a few months but I felt odd... my periods were a little lighter but nothing major... I went off the pill and bled for 3 weeks non stop. Terrorfied I went to the doctors again, and they put me on progesterone. Of course, nievely believing that doctors knew what they were doing, I took the pills... and for a furthur two weeks I bled... the bleeding became so heavy and so painful I was sure I was going to die. I ended up in a&e convinced I was hemhoraging. They told me to go back to my doctor... even gave me a note telling my docs to admit me to a specialist... which my doctor tore up in front of me!
Fed up, I finally managed to bully a different doctor into sending me to a specialist privately.

I was diagnosed with PCOS last August. My hormone profiles were low.. very very low.. but combined with cysts on the U/s and my free testosterone being almost 90% of my overall testosterone... and of course FSH and LH being reversed... they told me I had PCOS and put me on Metformin.

Met was great! I had only a few days of discomfort going on it and soon enough all my problems melted away. My periods became more regular.. where once they had been every two or three months, now they were every 28 days! they were heavy yes, but nothing compaired to what I was used to... the pain was next to nonexistant. However... there was one problem.
If I didn't take the medication as I was supposed to, and I do tend to forget... I would pay dearly. Missing even ONE pill would undo all the good... skipping medication meant that when my time of the month rolled round.. the old agony would return... My poor partner had to endure me crying in pain and knowing he couldn't do a thing to help me.
On top of this, while taking the pills normally I still felt pain... not af pain... but occassional stabbing pains in my sides.. near an overy or kidney... a pain that felt almost... like ovulation. It could last anywhere from a few minutes of seering agony, to hours of unbearable suffering. It was like having an internal blister that had burst (a cyst?)... every movement hurt... even sitting still throbbed... I'd never had these before I started taking met...

Another thing they found when doing my internal, and indeed every subsequent one they've done since I fell pregnant, was that theres some sort of inflamation behind my uterus. It's so painful there that sex can be uncomfortable at first, fingers are right out, and it's impossible for a doctor to do a full internal without me screaming. They have no idea what it is, and so far, noone has bothered to make any guess.

Anyway...

I started researching into pcos a lot more... and found that symptoms like mine are NOT associated with the condition. This bewilders me a little, as the met seems to work... what the heck is going on?
What is this inflamation? could it be a cyst? or could it be something else?

When I asked my specialist he mentioned that the pain and all that might be emdo... he wanted to do a few tests... but once I was diagnosed with PCOS my mother in her infinite wisdom decided it wasn't neccisary for me to have surgury as well... bah...

For a year i've battled on... yes my symptoms are very much decreased... but for how long? and more importantly.. have I been given the correct diagnosis? Is Emdo likely or am I just being paranoid?
If pain isn't part of PCOS... what the heck is it?

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