Sunday, August 30, 2015

How it all began...

So how did this all begin and what is the point of this blog... Well it's a slightly complicated story but I will start with what has happened this year. I started getting nasty, sharp pains on my right hand side at the front and back around where my kidney was. One day I was ok and the next day I wasn't. I went to see some clients in Cambridge just before the first Bank Holiday and collapsed on site. They arranged a taxi to take me to the local A&E hospital and had someone stay with me the while time I was being assessed. 

To try and cut this short they were expecting to find kidney stones, but instead found two lumps on each of my ovaries when they completed a CT scan. I was admitted to the gynaecology ward and that's when things really started to get moving. I have been complaining of stomach/bowel and kidney pains for literally over 20 years and was told it was IBS (irritable bowel syndrome). I have also had very heavy periods that caused me to pass out and have to miss working days due to severe dizziness and pain. It turns out after two visits to A&E and being admitted to hospital both times that in fact I have a very severe case of Endometriosis. I have popped a couple of diagrams below that give an idea of what this is but am happy to answer questions. 

Endometriosis as well as affecting 1 in 10 female reproductive systems and your monthly cycle also can have implications on the kidneys and bowels which is what has happened to me. My left kidney had pretty much packed up due to the endometriosis cutting off the ureter (the tube that attaches the kidney to the bladder). This meant that nothing could leave the kidney and it shrank and filled with water. The right kidney was also affected and was working overtime during all of this and it was a long term internal process that had been undiscovered inside me for many years. My bowel was massively impacted and damaged. When the lining of the uterus formed outside the womb each month, as well as forming around the ureters and kidneys, it also formed around my small intestine. Some was reabsorbed by the body each month leaving a lot of damage and scar tissue.

All of this has led to me having 3 life saving surgeries to try and put stents in both ureters to try and open them up and allow the kidneys to function (3 surgeries in 6 days in June 2015). I am waiting on test results to see if my left kidney can be saved still or needs to be removed. I also underwent major open surgery in July 2015 that was a joint procedure between urology, colorectal and gynaecology surgeons. They removed all 4 ovarian cysts, a "chocolate" cyst, all the endometriosis that was scattered throughout my pelvic and abdominal cavity, they disconnected one ureter and reconnected it to another part of my bladder as well as replacing the stents and had to remove around 10-15cm of my small intestine. This has left me with a stoma (what is called a loop ileostomy). Basically my large intestine is a loop connected internally to my rectum and is not part of my digestive system at the moment. My small intestine comes out through a hole in my abdomen to the right of my belly button and I have to wear an osmotic bag which needs emptying a number of times a day and completely changing every 1-3 days. I was not told that this was going to happen beyond a quick it's very uncommon so you don't need to worry about it and it has been a nightmare to adjust to mentally and physically so far, but I am trying my very best.

Anyway that's the basics of my surgery. This blog won't be particularly witty to read and may have some photos and descriptions that people may find disturbing as they will possibly be of a sensitive surgical nature. What I am focused on though is getting back to peak fitness and hopefully surprising where I was pre surgery. I was very active and enjoyed playing the full contact sport roller derby where I was a jammer as well as indoor climbing and bouldering plus pole fitness. It is my intention to be able to do all of these sports again and far more both while I have my ostomy and hopefully after it is reversed. This will be my journey back to health...


  1. Jeeeeeeeeezz. That sucks sweetie. Big time. *gentle hugs* and wishing you a smooth recovery, even if it does take some time. How awful it took so long for people to work out what the issue was.

  2. Oh hunny, what an awful thing to go through. had heard of Endometriosis in the past, but had no idea how seriously it could effect your body. Positive thoughts your way, that you will be up on those skates again in the future! lots of love. Toni x

  3. FairPlay to you for wanting to go back to roller derby! it was something I wanted to do before I had surgery in 2010 (I also have a bag and it was unexpected) I sometimes get scared about sports and such now which is silly really! Kudos to you for your blog and talking about it, it's not easy sometimes. Hope you're okay xox