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.
4 Comments Add yours
Wow, that sounds rather more severe than I had realised. I will continue to pray for you. Let me know when you are ready for visits and / or baking. (-:
I started my period when i was 10 years old and since that moment my cramps went from mild to horrible. Not knowing what I had became really stressful and depressing. It was until one night of horrible pain and 3 following days in bed that i decided to visit a gynecologist. The gynecologist didn’t even do an exam to me he just said “you have endometriosis” I had no idea what that was I had never heard of it. I am 22 yoa now and was diagnosed with endo when I was 19. I gotta say that it was a relief when i found out that i had it. I was finally able to get a real name for my horrible cramps. My gynecologist was surprised to see that I had endo at an early age and that the endo was really severe. When i went to get a 2nd opinion and that doctor confirmed with an ultrasound that i did have endometriosis I decided to get a laparoscopy. The gyno said to think it over and talk about it with my parents but the pain was so severe that i knew i had to get the surgery done. After the surgery my gyno prescribed shots of zoladex which where really painful and frustrating. I went through menopause during 4 months when i was only 19! The hot flashes were horrible but at least the endo symptoms decreased. It’s been almost three years now and the symptoms have improved but birth control pills have made me gain weight. I just wanted to share my story cause sometimes it feels like i’m alone in this. I do feel better but sometimes it makes me so sad to have this disease. I try to show my best attitude towards it but sometimes you just need to talk to someone about it who actually understands what your going through. I get married in 6 months and i am aware that i have a high chance of being infertile but I know that i’m not alone in this.
Thanks for reading my story!
oh Fi! ((((((huge hugs!!!!)))))) We’ll keep praying for you over here, and I know you’ve got some good support where you are too. If you ever just need to unload send me an email, I’ll send you hugs back, I promise.
I’ll try to send you a proper email when my exams are over – one to go!