endometriosis support

[Cat75]

I had a diagnostic laparoscopy 2 years ago for endo and had ablation to it but still had very heavy periods and pelvic and abdominal pain. This has gone on for a while now and i feel i sometimes don,t get the support i need when i end up in a & e not being able to cope because of the pain. My last visit was ok in march this year but by the time i was transferred to gynaecology ward in the early hours i just had a doctor asking me who managed my endo and when i said my gp he then continued to say i should be under a gynaecologist who just specialises in management of my endo. I,m still waiting for the referral now. The doctor registra who was on call said i could go home that morning but i argued i wasn,t ready so was eventually left to stay the night. Has anyone else had same difficulties as me, please say yes as i feel so alone in this personal fight to be treat properly.

[LilCheebs]

Yes! TOTALLY sucks and I feel for you! Before I was diagnosed, (only last year) I ended up in A&E too - thought an organ was exploding!

A&E docs won't do much other than stuff you with pain killers and send you home - this is becasuse its not "an actual life threatening scenario", even though we feel like we are dying!

so they will push you back to the GP for referal to a specialist - reserving A&E for "life or death need to act now" scenarios.

Has it been ages since the referal process started? Can you speak with your GP agian to see the progress? I was a bit of a bother and rang for cancellations daily!

Are you taking over the counter meds for pain management? Or has your GP given you any prescriptions?

that A&E visit I wrote about, the doc gave me buscopan - which is an anti-spazmatic (sorry i cant spell lol) - this helps with the severe cramps and is available without prescription, OTC. Codiene works for me too, ( or a combo of both buscopan and co-codomol - but I am NOT a doctor so just saying what helps me cope!) but codiene also can bung me up - causing more pain! argh.

Don't give up! Once you start some sort of treatment, it will become more manageable and should become less painful - its getting to that first appointment thats the hard part!

Chin up buttercup! xx

[Cat75]

Hi Lil Cheebs i,m sorry to hear you,ve got this terrible disease too but knowing i am not alone helps. I haven,t chased up the gynae referral as yet but i will do next week thank you for suggesting that, good idea. The problem with me is that endo is only 1 of my illnesses i have severe ibs, pcos and fibromyalgia too, i am on very strong analgesia anyway but when i get my endo flare ups i need oramorph too and the hospital can administer stronger dosage that brings it under control for me. I have been fobbed off before my a & e with them just suggesting pain management which i have already done before. The thing what some medical professionals do not understand is they have no history of this debilitating disease and the fact that a woman knows her own body so when i end up in their hands its because i have exhausted all other coping mechanisms i can at home. I already am on regular buscopan for my pain but it does nothing for me in that respect it only helps with my bowel spasms. Because of all my pain and constant vomiting because of the analgesia i now have no quality of life at all i just don,t know where to turn next. I was under jessops hospital for fertility problems and was told i can not have children which devastated me and my husband but i have now sort of come to terms with that and asked for a hysterectomy because that could improve my pain but they won,t do me one because of my age. I can,t wait for this next referral just to see what if anything they can offer me next, i just hope they can help me ):