Exhausted, tearful & awaiting answers...

[Lillil]

Hello all! New to the site today after a year of bad pain (years of intermittent pain) and still awaiting answers. Initially thought by Drs that pain was caused by kidney reflux I had as child, complicated by the finding of a kidney cyst which apparently would not be causing my pain. As a result have been discharged by Urologist who thinks I have endo and today am due to see a GP - a male! I have never met before, in bid to get first available appointment, to try and get referred to a gynaecologist.

I am dreading the thought and effort of trying to convince for a referral, whilst trying not to sound like a hypercondriact! Or google lover, but also getting what is needed...think I will spend half of it in tears!

Am feeling confused after two horrendous months of pain, then this month not being so bad. After someone asking me how do you know it's not period pains...like I'm looking forward to being diagnosed with endo or told by friends you don't look as bad as you made out! I feel like a paranoid, crazy person...so if anyone can answer following would be most grateful.

Initially my pain started off cystitis like, and I got what I would describe as bladder spasms, where I would go to the toilet and when finished it would continue to feel like I needed to push, which often resulted in period like pains even thought I did not have my period. The pain was very low pelvic initially and bladder region, but has developed to most times I'm go the toilet it feels like my bladder, bowel and uterus all want to push! Or if I'm on my period my bladder spasm pain or bowel pain (also have Ibs) are worse. Also have developed pain lower back in two horizontal stripes. I get pain in my left thigh too. The pain can be any time of cycle but definitely worse at ovulation, week before cycle and up to five days after cycle. My cycle has got shorter, periods aren't particularly heavy, but heavier and my breast are harder, more swollen and painful than normal...am not pregnant as every gp assumes! Does this sound like endo? Anyone else had similar? Also am always tired but not anaemic.

Also I'm worried as already on progestrogen only pill, as cannot have combined as my dad had a stroke at young age...anyone else had similar? What treatment did you get offered.

Painkillers don't seem to work for me, often have to take codeine or buscopan...heat is the best...any suggestions?

Most importantly how do you get through it?! I have such a stressful job and the thought of having to spend years of tests and worried not getting answers and risk to my fertility as time goes on.

I'm 29 and yet to have children. In a new relationship of nine months. I have no doubts he is the one and has been fantastic through all, but talking babies when we don't live together and not financially secure...don't want to scare him away!

Help!!!!

Sorry to waffle...have brain overload!

Thanks for reading xxx

[Catcat]

Hi sorry your suffering so much with all the symptoms you have, I have had endo since I was 17 and am now 37 and all your symptoms are familiar to me , explain to your gp all your symptoms write them down and keep a diary it helps to get your symptoms across and don't e fobbed off good luck x

[shopaholictink]

Sorry to hear of your suffering, I too was treated for kidney problems for a number of years including spending long periods of time, in hospital. I've now been diagnosed with endo in a way it was a relief to have the diagnosis as I too was told the same as you period pain you don't look I'll etc I got To the point where I was so messed up I got to the point thinking am I imagining this,

Hopefully you will get some answers soon xxx

[fayebird]

Hi - I've just been diagnosed in the last month and complete relate to your brain overload feelings! I too have had years of intermittent pain and then bad pain over the last year. I've had endo lesions and adhesions removed via laparascopy and the mirena coil fitted. I suffered with headaches on the combined pill but the mirena is apparently a lower dose, so maybe that might suit you?

Write down everything you are experiencing, push to see a gynae. I've found gps are clueless and unsympathetic. Friends - well the ones who care will bother to look up the condition, the rest are falling by the wayside for me at the moment. You know how rubbish you feel, you don't need anyone making you justify yourself.

Hugs xx

[fayebird]

Also to add fertility wise - try not to worry, endo doesn't necessarily mean infertility - the stats are something like 30% of perople with endo have fertility issues so thats a massive 70% that don't!. It depends where the endo grows. By way of reassurance I have 2 children and conceived naturally, each within 6 months-1 year of trying. x

[Lillil in reply to fayebird]

Thank you all so, so much. Your support and advice is invaluable. Currently off sick in lots of pain after a day or nearly fainting at work yesterday. Can't wait to get a diagnosis...thanks to all of you not so scared anymore xxx