Health update

Winter has been difficult with my health this year and I've been trying to get to the bottom of the issue, but this is proving more difficult than I previously thought it would be. My cardiologist appointment is coming up first. It will be an opportunity to update my cardiologist on recent events. A few weeks back I went to the cinema and accidentally fell asleep. The cinema staff couldn't wake me and phoned an ambulance. My heart rate can be quite low when I'm asleep especially with the pain medication I was on. It's been a hard road getting off them, and has been over two years on and off. Whilst I am grateful for the right pain medication when needed, I also don't want two medications that lower my heart rate. It is, for me, a necessary sacrifice for my heart health. I have asked for help with pain management from the hospital.

Pain management 

The pain management team have sent me over to the musculoskeletal team. I'm still waiting for pelvic pain management and will be asking the gyny for help as I've had no luck locally. 

Musculoskeletal have set me up on a course that will teach me how to pace myself, to better cope with my pain. However at the moment nothing has started. I think maybe I need to investigate what I want and see if they can help orchestrate it. I would like to see if acupuncture is still an option and also physio.

I think it helps to know what you want your care to look like and be strong in advocating for it. At the end of the day, it's me that has to live with the side effects of the surgeries, the medication and treatments I am given. It's important to me to research my conditions and be careful what avenues I go down so that I'm not wasting energy, time and resources. 

It might not be possible to eliminate my pain completely. Life is constantly adjusting around my pain levels and physical symptoms. I do what I can. I'm learning to give myself a break if I can't do it or just need to rest. 

Finally Gynaecology

Back to gynaecology to see if he can shed light on why I feel like I have hormones when I am post menopausal and have no ovaries. This one really is a head scratcher. I have been frantically researching the link between tamoxifen and endometriosis, the re- occurrence of endometriosis post oophorectomy and also if endometriosis lesions contain estrogen or can produce estrogen locally. I don't actually have any answers and most research is underfunded and desperately needs more research to have conclusive evidence. I have absolutely no idea however what my gyny can do for me. He can't operate on the thoracic endometriosis. I don't know who in the UK can. I am hoping that he has some answers. 

When it comes to thoracic endometriosis it shouldn't be a roadblock, because of a) money and b) availability of a qualified surgeon. I don't have the money to go privately. And there may not be a qualified surgeon locally who can help. I was lucky to find someone who is an endometriosis specialist. But thoracic surgery is complex. 

My appointment is at the end of the month. There's not much more I can do to prepare for this one. I have spoken with breast cancer now and the endometriosis foundation charities and my oncologist. It's got me to this point and now I need to link the gyny back in. Due to the complexity of my health conditions, it's important that all of my doctors are working as a team. This advice definitely came from a book written by an endometriosis warrior, although what the book was called and who wrote it slips my mind. I will try and find out and put the book in the resources section as it was a good book on how to advocate for oneself with endometriosis.