I started this post three months ago on 9 March but shelved the draft as I wanted a definitive diagnosis, some time to rest and think and I guess, for once, I wasn’t ready to share. Writing it has been therapeutic and in many ways I’m not sure sharing the messy details will help but who knows.
March 9th was the first day of quite a few appointments I’ve had recently on the Lower Ground floor of University College Hospital (also home to physio where they’ve been sorting out my ankle) and I expected it, at worst, to confirm I had more ovarian cysts that might need removing. After a quick scan, check with a consultant, I was gently sat down and told it was suspected I had endometriosis. I had no idea what this meant.
Endometriosis is an incurable gynaecological disease where endometrial tissue (that’s the tissue on the inside of your womb if you’re a girl – sorry guys, you don’t have any) starts growing outside the womb (most often in/on your ovaries) but continues to go through the usual monthly cycle business. This tends to cause a lot of pain, cysts filled with old blood (sweetly known as “chocolate cysts”) and if you’re really [un]lucky it starts sticking organs together.
In mid-April Tim & I met one of the nurses from the Endometriosis Clinic at UCH who, having had a thorough look through the scans, talked us through endometriosis, my symptoms, problems and their causes and through the options. I had two cysts of concern, ‘kissing’ ovaries and an obliterated Pouch of Douglas that needed to be looked at and treatment. Quite remarkably, two weeks ago I was offered this fairly simple surgery and was wheeled into the operating suite mid-afternoon last Friday.
I am recovering well but the surgery was only a success in that that managed to do one of the five things they had planned – they had a good look around.
The endometriosis inside me was found to be more severe than expected and on one side endometrial tissue has stuck my womb, bowel and the ovaries to each other. This is not good. For the next 3-4 months I will have hormone shots to put me into a mini-menopausal state, decreasing the size of the appropriate organs to help make the next surgery easier. Meanwhile a team of multi-disciplinary surgeons is assembled to cut out, burn out, reattach and sort this all out. They hope to preserve as much of me (gynaecologically speaking) as possible. I like that they’re all experts but that this is necessary scares me.
In September/October (we hope) I will be admitted to hospital for this major surgery and given the higher likelihood of infection (what comes from fiddling around with sharp implements and the bowel), it is expected I will be in hospital for up to a week followed by a substantial recovery. My amazing mum is going to come across and help take care of me as I recover from this second round of surgery. On the upside I should be well-mended by December in time for my first full McKenzie family Christmas (in Wales) in 5 years as Dad and Katie join us here.
I guess I haven’t blogged about this (and by extension about life at all – it’s been a little consuming) because it’s taken a lot to get used to, what I had in my mind as a one-off removal of some cysts that were giving me pains and could rupture, turned into an incurable illness with the need to think about issues I hadn’t given a moments thought to previously (children, for instance). I have so much to be thankful for but there are/will be days when it’s all a bit much. I am in the right workplace where I can continue to provide insight and help but also receive the pastoral support and substantial surgery leave I need.
Normal service on this blog (covering the usual mish-mash of topics) will resume shortly but will be sporadic around my bouts of pain and better days – please bear with me through this.