Hey Caitlin,

I have had the Mirena coil for a while now. I’m still in a lot of pain and spot / bleed most days. I had the coil in last year but the cancer still developed so after my new biopsies I hopefully will have a plan going forwards.

if it returns again it is going to be a hysterectomy and then that’s it. I’ve been poorly now since September 16 so it’s a long old time. 

i hope you’re okay x

Hi 

I am in a similar boat , I am 31 and have been diagnosed with complex endometrial hyperplasia with atypia. I had the mirena coil fitted in September and waiting for my six month checkup. I find my specialist unhelpful and patronising. So far I haven’t had any complications with the coil and hoping for a positive outcome at my next appointment . I agree that there isn’t much information for women under 40 and I still don’t fully understand the next steps and what the future holds.

I have PCOS and was diagnosed at a young age, if it wasn’t for my persistence and knowing something wasn’t right I would have never found out I had this. 

I too am praying for a family, there doesn’t seem to be any information or success stories out there .

Georgie x

Hey there;

has anyone had any joy with the Mirena coil? I’ve had mine in since August 17 and still bleed every day.

I’m awaiting further d&c biopsies but was told they couldn’t do them again so soon due to “scar tissue” but I’m starting to feel like I’m being fobbed off.

i feel so down about it, I constantly feel dirty and overall I’ve had enough. I’m on tramadol and pregabalin amongst other things and still can’t get my pain under control. 

Sorry for moaning but I’m at the end of my rope with it x

Hi, I've just been reading through this chat after doing some googling and hope you don't mind me getting in touch. I'm really sorry to hear about your diagnosis. I was wondering how you was getting on now?

I've been diagnosed with complex hyperplasia with atypia after having a hysterascopy in June followed by one in August and then an MRI scan in September. I started taking provera in August and have just been today for another hysteroscopy and biopsys this morning in which she said my lining is still quite thick. I'm terrified for my results and was just wondering if you had more joy with your results. 

Thank you

Emma

Hi @Riley18, 

I just thought I'd share a positive result after this diagnosis, I hope you find this helpful 

I'm from AU and I was diagnosed with compex endometrial hyperplasia with atypia 2 years ago at age 18. I underwent multiple d&c's and hysterscopy's to take biopsies of my lining as it was 20cm thick and had cystic spaces. I had the IUD (mirena/coil) placed while getting a biopsy taken and then had my lining resampled 3 months after - these results hadn't changed and I had another biopsy another 3 months later. This biopsy came back all clear! I'm still recieving treatment (IUD) for the next 5 years (for now - probably longer) and I see my gynaecologist every year. 

It's tough and it's a hard diagnosis to have, I wish you all the best 

Hey Riley.. so I had prostap for 6 months and lost around 4 stone. Had my coil fitted and I am now completely fine. I have a large cyst on my ovaries but other than that my lining thinned down. 
the prostap takes it toll on you though that's for sure. Very sorry to hear about your diagnosis. There isn't nearly enough info out there x

Thank you for replying. It's the first time I've spoke to others that have this and feel abit lost with it. I've been under my consultant for 5 years for trying for a baby, 2 years ago I had a hysteroscopy because my lining was thick but biopsys was fine, so in June when they retested me it was all abit of a shock considering I had normal periods. I'm only 32 and again have no children so suppose I've got to wait and see for these biopsys to see if the provera has worked. Really glad to hear some positive results from this. 

Thanks again

Emma x

Hi, I'm in exactly the same position as you and was almost bullied out of a hysterectomy however I stood my ground. My consultant was unhappy to operate so I was discussed at the next MDT meeting. A  more experienced consultant was happy to operate and asked me to come in for another scan so she could see what was going on with my insides. Because I'd already have my left ovary removed via abdominal surgery she was confident there was enough space and the tissue was flexible enough to approach with keyhole surgery and was hopeful the lessons attached to my bowel could now be lifted too. As she said you just need to plan ahead. Let's face it if conservative treatment doesn't work they have to do a hysterectomy anyway. There is a high risk of cancer being diagnosed when the histology is done after the hysterectomy so I was insistent on having it done sooner rather than later.  If you'not happy id go back..good luck let us know how you get on.

Hi everyone 

I hope your all well. Would love to hear an update from you all as I am at the start of my journey. I have just got back from my appointment. i have been having irregular bleeding for about 3 years and have had lots of tests. Smears normal, cervical polyp removed which was normal. No erosion to the cervix so they started looking deeper. Had an ultrasound in October 2018 which showed a slightly thickened lining but nothing was ever done about it and I was discharged as they said they had exhausted all options and couldn't find anything so put my spotting down to a hormonal imbalance. I went on and put up with it for a year but wasn't happy as it wasn't getting any better so went back to my gp and got referred to another hospital.  Iv had another polyp removed from the neck of my womb this time and a biopsy. I went back today for the results. No cancer cells and no abnormal cells were found on the polyp but it did show a thickened lining so he wants me back in for another scan and to have a proper look in my uterus. He did mention the coil but I want a baby (me and my partner have been trying but I have pcos so don't think I ovulate) he said the coil would be a temp measure until I get my bmi down (it's 42) that would held my periods return to normal and I could be referred for fertility treatment. After some research I am a bit confused. He never mentioned hyperplasia. Is this what I have? He just said the lining was thick and wanted to have another look at it. As there is no abnormal cells does this mean it's not hyperplasia? 

Sorry for rambling but it's playing on my mind I don't know what to expect.