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All posts for the month January, 2013

Get well cards, too much chocolate and male strippers

Published January 29, 2013 by crazyinpink

I’ve officially been recovering from my operation and resting. Unofficially, I’ve been watching a lot of Sex and the City and eating chocolate.

The first week I could barely do anything for myself. My mum, officially awesome, took some time off from work to help me out for the first few days then worked half days so she could be here in the afternoon.

She went back to work last week and I had to fend for myself. My meals were all pre-prepared (seriously, how awesome my mum is), I was now able to run a bath by myself and potter around the place.

Here are some things I have learned during my recovery:

1) Daytime tv is both awful and incredible. I became ridiculously addicted to a show about a priest who solves crime in 1940s England. It was so bad and cheesy, I absolutely loved it! I even tweeted about it one day and ended up having a weird conversation with one of the actors. Which I loved, obviously.

2) Get Well cards are so sweet. Especially when Best Friend, a boy and therefore genetically rubbish at card-giving, sends one in his atrocious handwriting having facebooked my brother to find out what my address is.

3) I have eaten more grapes during the past three weeks than all of 2012.

4) Trashy magazines are perfect reading for daily salt baths.

5) People who visit will bring you the weirdest assortment of gifts ever. In total I’ve received 5 bunches of grapes, 6 large bars of chocolate, a box of chocolates, magazines, a body polisher, a bunch of flowers, a decorative pillow, a two-handled mug, a bag of personalised coffee, a batch of homemade cookies, a Disney Princess egg and Stuart Little on dvd.

6) I love the people who visit. It’s been tricky since we had a bout of snow which screwed up traffic and particularly caused problems since I live at the top of a hill. But people from church have been very good coming to visit and some of my friends have popped over to see how I am. My Toyboy was nice enough to help me eat my chocolate while watching the show about the priest and looking up endometriosis on my new laptop. Two friends from uni, scuppered a week ago by the weather, finally made it up on Sunday and we ate a lot of cake and analysed the many philosophical themes in the movie Magic Mike.

7) I am in danger of getting far too involved in Sex and the City. I got the boxset for Christmas and, although I’ve seen them all before, I am now finding myself yelling at Carrie on a frequent basis.

8) A guy who started pursuing me before Christmas has dropped off the face of the earth. After bumping into him at graduation, he then started commenting on facebook and kept sending me messages until we swapped numbers. Then relentless texting followed. Then he asked me out for coffee. Three times he cancelled our plans at the last minute and the last time didn’t even bother to reschedule. He hasn’t been in touch since before I went into hospital. So not worth it.

9) A friend has really disappointed me…but that’s a whole other story for another time.

10) I’ve been busy tapping away at my keyboard lately, telling my endo story to others and hopefully appearing on other blogs. In my role as the face of chronic pain, I’ve also been asked to be interviewed for a broadcast series on chronic pain sufferers and their experiences! I don’t know many details at the mo, but it’s really quite exciting to be involved raising awareness!!

The Surgery Saga

Published January 22, 2013 by crazyinpink

Okay, saga is perhaps too dramatic but I do want to talk about my recent operation.
I went into hospital on the 9th January for all my prep (injections, drips, yucky stuff that clears out your bowel) and went to theatre the next afternoon for ‘radical excision of endometriosis’.

The op was a success, I am very pleased to say! That night, still under the influence of morphine, I had (or rather my mother had asked someone) been told that the surgery went as planned but until my doctor came, I had no more details. Happy enough that nothing had gone wrong and they had obviously done what they had intended, I settled down for the night in my surgical stockings with random things around my legs that inflated alternately and my many drips and oxygen.

Two hours later, I was woken up by a nurse who had to take my blood pressure, etc. She noticed that my pelvic drain wasn’t working properly. My catheter seemed to be working fine but hardly anything was coming through the much thicker tube coming out of me. She bustled off to find a new container for the end of the tube and clamped it so she could change them around. Once she had the new container in place, she warned me that I might feel a ‘tug’ when she unclamped and the suction started working. The ‘tug’ was without a doubt, the worst pain I have ever felt. I wasn’t even totally aware of where the drain was coming from until then but it was inserted in one of my wounds, inches below my belly button. I instantly started crying with the pain. The nurse, sympathetic, told me it was a sign that it was working properly and held up the new container to show me the amount of blood that was already pouring into it. Better out than in. After an hour, she gave me some tramadol to help with the pain. Tramadol is good but as I am on it daily, it didn’t even touch this excruciating pain in my pelvis. A few hours later, I started throwing up with the pain, something which has never happened to me before. After that, I got an injection for the sickness and IV paracetamol. Again, it didn’t even touch the pain. By the time a doctor appeared in the morning, I hadn’t slept and the pain was still as intense as it had been at first. I was hoping I would pass out from it so I wouldn’t have to feel it anymore. When the doctor came to check on me, I instantly begged to have the drain removed. He noted how distressed I was and asked a nurse to remove it asap. Around an hour or so later, the nurses clamped the drain. I felt instant relief. It was another 15 minutes before they actually took it out but as soon as the suction stopped, the pain vanished. Having it removed wasn’t a picnic but I was just so glad it was being removed, I didn’t even care. I watched as the nurse gently pulled out over 6 inches of tube covered in blood.

By the time my consultant came to see me that afternoon, I was a different person. I was washed, changed out of my gown into pyjamas and although I still had my catheter in, I felt amazing compared to the night before. He told me the details of the operation.
More endometriosis had grown since my last lap in July. Back then, he had found it on the outside of my uterus, vagina and lining the pelvic wall. This time, it had spread to both sides of the vagina, both sides of the rectum, along the back of the pelvic wall and onto my bowel. He showed me roughly how much they had cut out – around the size of a side plate. There was a small amount on my bowel that was in too dangerous a position to try to cut out so he had left it alone. Answering my questions about this remaining bit, he said that it was miniscule compared to the amount he cut out, only about 1% of the entire diseased tissue. He warned that because he had to cut quite deeply into good tissue, especially around the pelvic wall, my insides were raw and would take a few months to heal. I might not feel the benefits of the removal until they all heal completely but he was very confident that I would see a massive reduction in my symptoms.

As he did in July, he said well done and squeezed my knee. Technically, it should have been the other way around…I just slept there while he did the complex surgery but I knew what he meant. Along with practically every other doctor I’ve seen, he had argued with me that I couldn’t possibly have endometriosis and only agreed to do a laparoscopy because I insisted and fought him to get it. I was right all along. No one knows my body as well as I do and while I might not be a doctor or a specialist, I knew that what I was going through wasn’t normal. I knew it wasn’t in my head though countless people insisted it must be.

The surgery itself wasn’t really a saga. But my journey to get here was. If I accepted the doctors and everyone else when they told me there was nothing wrong with me, I would never have been given a positive diagnosis. I would be on anti-depressants for this phantom pain that they thought I was making up. I would still be in pain from the aggressive disease that would still be inside me.

But I’m not. Now nobody can say it’s all in my head. I have proof that I was so riddled with a disease that it grew so aggressively even within six months. The war might not be over but I’ve won this battle. And now I’m recovering in relief.