I don’t see many intros, but as I’m new here I thought I’d take the plunge and introduce myself.
I’m Nicola (Niki) and was diagnosed with stage 3-4 endometriosis earlier this year. Although I haven’t had a laparoscopy, the multi-disciplinary team at the Beacon hospital reviewed my MRI and concluded “there was certainly evidence of considerable endometriosis within the pelvis. The left ovary was enlarged with multiple endometriomas within it. Both ovaries appeared to be attached to the fundus of the uterus indicating likely adhesions. There are also lesions evident at the back of the uterus.” And it was mentioned that if I decide for surgery, I would need to be referred on to the Gynae Oncologist, Mr Waseem Kamran.
I’ve always had heavy and painful periods which had been gradually getting worse. Ironically, in 2018 after being diagnosed with type II diabetes, I lost 18KG (40lbs), and my pain and symptoms exploded to where I had 2-3 weeks of pain every month. I managed to reverse my diabetes, but it seems the oestrogen released from the fat I lost, increased the endo symptoms.
When I mentioned to my GP that I suspected endometriosis (my mam had radical hysterectomy in the 1980s due to endo), she put me on the progesterone only pill, Cerazette (my mam had just been diagnosed with oestrogen reactive breast cancer so I can’t take the combined pill). That has been working surprisingly well for me, almost no pelvic pain now and no periods for the last 10 months.
Anyway, I was due back to the gynaecologist this month but decided to postpone it so that I could do research and educate myself and know exactly what questions I should be asking. It has been so amazing having relief from pain but now the questions are flooding my head – how long can I stay on this pill, is symptomatic relief enough – and how long will it last, does the endo continue to progress and worsen even if I’m not experiencing pain, what happens when I get to menopause (although I don’t have any children, I am 44 and single so fertility isn’t really a concern at this stage of my life), how many of my other issues could be related, etc.? So here I am, hoping to learn from this group and discover my best way forward.
Sorry for the long intro, and thanks for reading if you got this far! I’m looking forward to learning from the experiences of this group.