Warning this is very long and contains some sensitive information that might be triggering for some.
Hello lovely people, hope you are all coping ok and having a comfortable day.
I have been quite active on here for a few months telling my story of living with endo since I was very young until now at 57 waiting on an urgent list for the last year for total hysterectomy and bowel resection to try and stop the damage and repeated painful pelvic infections the fast growing endo is now causing.
About three weeks ago I had to make one of my now frequent visits to a&e when the pain levels got too high to get on top of with tramadol and oral morph at home, also feeling much more poorly than normal for me. I spent the night in a&e majors needing to then be admitted for my third bout of sepsis caused from infected endo!!! I’ve just become so used to pain over the years that I still get caught out when it gets dangerous for me.
When my consultant at the BSGE centre I’m under was sent the notes she contacted me straight away for emergency admission under her care to treat, assess and scan to plan for surgery that I had been due to have on Monday this week. I was in a large city hospital for 12 days on the most amazing small emergency gynae ward, in a room of my own. All the doctors, nurses and care assistants went above and beyond that I felt like I was having private care from friends. Any tests I needed or requested were carried out the next day!!! I even asked to be added to the list for breast scanning as I needed to know I wouldn’t be facing double mastectomy too. In all my years through 12 abdominal surgeries and 3 breast cancer related ops and treatment I have never experienced such a high level of care, compassion and genuine concern for me. The nurses were even contacting each other on days off to report on how I was doing, praying for and with me and updating each other on how I was doing.
That’s the positive bit and I will be forever grateful for them all making a difficult time when I am so poorly and frightened as good as it could ever be.
Unfortunately the mri and then ct that was done to look at what was infected and what was endo shocked all the consultants as it has shown up a malignancy in my uterine wall that had been thought on a previous scan to be a small adenomyoma that has now grown in 6 months and secondary in my liver and lung. As you can imagine I’m all over the place now but back home awaiting the results of a liver biopsy to determine if the secondaries are from the previous breast cancer or the gynaecological tumour to see if I can have treatment and get me as well as possible and as more time too. I know many people can live many years with secondary cancer if it can be stabilised and kept stable. If they can treat it I am in for a hell of a fight and am trying not to do the what ifs at the moment and mentally detach from my hair preparing for chemo.
I have really found comfort on this forum over the past months trying to support where I can with my life long experience of living with endo and adeno to try and make something positive from it all but I hope you will understand that those of you who I have been in contact with that I need to disappear for a while. I will check in occasionally to see how you all are doing and god willing will be well enough in time to reach out with support where I can help.
Please do not start worrying about yourselves thinking your symptoms could be the same as me as what has happened to me is extremely rare, I am one of the older people on this forum and as I said before the findings have totally shocked the consultants.
I wish you all the best and send strength that you will all push for the care you need and not give up on your journey living with endo. I also ask if any of you have faith to offer up a little prayer for me or just send some positive thoughts.
Love to all Poppy🌞