I'm so sick and tired of all this. Mirena isn't helping...blah blah blah. You've heard it all before.

[Sosickofendo]

Hi,

Im so exhausted with this. I was diagnosed with endo 5 years ago after suffering 8 years with excruciating periods and my GP sending me away every time saying it was just normal period pain and that I'd grow out of it. Even though I was fainting, having both diarreoa and constipation and vomiting. I have since seen another GP who actually recognised the symptoms and sent me for a diagnistic laproscopy to find endo on my ovaries, bowl and on my womb. I then had a course of injections to make my body think it was going through menopause and a mirena fitted. After the pain decreased for 3 years (it was amazing) it then gradually started coming back fiercely and was sent to have my mirena out 1 and a half early...just to have another bloody one fitted! Now I'm back to square one with excruciating pain and now back to them wanting to do another ultrasound which has been postponed for another week and possibly another laproscopy. I'm having this s***e of a disease take over my life every single day now. Painkillers don't help and the only thing that has any effect whatsoever is about 3 hot water bottles distributed between my legs, back and abdomen. Isn't it obvious that the coil isn't doing anything or is it just me? I can't deal with this much longer 😢😢

Kat x

[mystyle]

Hi Kat What you've been through was exactly the same as mine, 12 years of being sent away, I'd be on my knees with excruciating pains and can't move, very painful bowel movements during periods, only five years ago I was diagnosed with stage 4 severe endometriosis. Had laparoscopy and also had 6 month period of injections. Unfortunately it took about 6 months after the operation the mirena was fitted so the cycts have already started to come back by then. After two years the cysts have grown to 13 cm this time I was sent to a specialist. Had two stage of operation this time. And each operation I was fitted with new mirena. The first mirena I had never had a problem, the second was displaced and it was a right annoyance, this third one I thought would be another mess but I persevered the first 5 weeks to 2 months was uncomfortable, painful sometimes and a lot of spotting nearly everyday. The pain seems to have gone away after 2 to 3 months after fitting but the spotting is like forever. The last mirena I had fitted was in January only in the last 2 months that the spotting have subsided a bit, what I mean is when my supposed monthly comes instead of heavy period what I get is very light spotting and it now only lasts 2 to 3 weeks instead of everyday and now I hardly have pain. I know you're in pain but Please hang in there and give your body a chance to get used to the mirena. If the painkillers they gave you doesnt work then please request for an alternative. Hope you'll feel better soon.

[Sosickofendo in reply to mystyle]

Hello,

That sounds awful but very familiar. I don't even have a clue what stage my endo is. I seem to be in the background to my own endo. I just with they'd tell me every detail as I want to know what it's doing to me. Whether I'll still be able to have children in a few years and God forbid, have to include a hysterectomy in my options. I've never had any bleeding or spotting with the mirena, just crippling pain. It doesn't sit well with me. I don't think. I feel like I've hung in there with it. This is my second mirena and it's just giving me hell and I've had it in way more than 6 months. Thankyou for being so supportive x

[Starry]

Hey, if you endo on the bowel are you being seen in a bsge accredited specialist endo centre?

It can take up to 6 months to adapt to a mirena but it is also possible for more severe/advanced endo to become hormone resistant, and recto vaginal endo if tjat is the type of bowel endo you have in particular has a reputation for doing that so it may be worth exploring that in due course.

[mystyle in reply to Starry]

Hello Starry I was sent to a specialist in Chelsea and Westminster, also I forgot to mention I had recto vaginal endo, everything were stuck to my bowel because of the scarring apparently. They lasered them off and also cut opened my ovaries, scraped and sewn back together. They did a very good job indeed. The specialist name is Mr Richardsons, can't remember his first name but very pleased with his and his team's work. Hardly have pain nowadays, just waiting for the mirena to finally settle down.

[Starry in reply to mystyle]

Good to know. Fimgers crossed. It is just the mirena taking time to settle and not hormone resistance setting in. Sadly mirena did nothing for me X

[mystyle in reply to Starry]

Sorry to hear the mirena did nothing for you. I just hope and pray for the time to come when we'll all be free from this horrible disease... X