Endometriosis UK

desperate for help

hope someone can help, i have had chronic pain for 20 months now and thought it was my mirena coil as it had been in for 13 years and despite numerous attempts to get it removed by gp nurses etc it eventually was removed 2 months ago, unfortunately i am still in extreme and constant pain, just keep getting pain killers from gp, the pain is a burning sensation in my pelvic, tummy and hip area, extreme fatigue but i cant sleep well (up at 1 am usually), i also get a lot of stiffness in my shoulders and back and even battle to get out of bed, i dont have faith in the gps helping me as they seem completely disinterested, can anyone please help?

5 Replies

My endo started with a burning pain around ovulation. Eventually my pain was every day and I developed kidney pain as well. My cycles changed from 1 week on out of 3 to 2 weeks on 2 weeks off.

1sr gynae told me no one with endo describes burning pain and its not cyclical enough to be endo. She tried to blame it on my copper coil. I told her it was my 2nd one. She said this one might be a different shape and irritate the womb.also she said if the test ls come back negative it's dysfunctional uterine bleeding "which is code for we don't know"

All they wanted was for me to try mirena. I have history of migranes and depression. I have had progesterone implant in my arm before and still had periods. For these reasons I didn't want to try mirena.

I didn't get any joy until I asked for a private appointment. I was listed for a lap on the day. A few weeks later they found endo on my bladder during my lap. I'm now on tramadol and having kidney scans. Oh and I had a damn mirena fitted which will do absolutely nothing to the endo on my bladder. How ironic.

My advice is push for a lap,go private if you have to,pester your gp..turn up in a&e as a last resort. And get some pain relief until your lap.

Don't give up!



1 like

That is exactly what my daughter said, to go to a & e and keep pestering them, i just get very despondent and get very down and feel like giving up. I dont know if its related or something else entirely but i developed alopecia 2 years ago and with it panic attacks and depression, when i was getting blood tests taking yesterday i managed to get a cheeky look at nurses computer and they had under diagnosis "fibromyalgia". The dr has never discussed this with me and i am seriously thinking of now going private. I was in so much pain last year that i promised myself i would not go through another year like that again! It is seriously affecting my life and am battling to do my job properly! thanks for your advice xxxx


Hi there. Definitely get yourself referred to an endo specialist. And you no doubt know this but you should have had your Mirena replaced after 5 years ( just had one fitted after my second lap, so far so good) so this may have even caused some long term damage or an infection that a specialist could pick up on/explore.

All the best, hope you find a resresolution quickly x


yes, I nagged the drs to remove after 5 years, they said only if it caused problems, dont get me wrong I was very happy on the mirena, it just made sense that where my pain was and my symptoms that the mirena had to be removed to rule it out, what we woman go through we deserve better care and a medal! xx


Hi! This thread has just really helped me. I feel like I am going crazy, I've just convinced my dr to refer me again. Its like they don't believe me. I'm so fed up. I don't have the money to go private but last time it was really bad I thought about going to a &e but I didn't want to be seen as a time waster. I will now, I'm worried it is affecting my bladder as it really hurts if I need to pee now, I can't hold on anymore. The waiting list is 8 months and I don't want to wait that long. It took me 10 years to get my first diagnosis.


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