operation

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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.

Christmas and Endo

Published December 28, 2012 by crazyinpink

First of all, to whoever happens to be reading this, I hope you had a very Merry Christmas!

My Christmas was lovely, just a quiet, family affair with lots of laughter and banter.  The only downside was the pain. 

Over the last few months I’ve had trouble eating.  Around half an hour after each meal I get the most awful spasms and pain.  On my last trip to the doctor, when I actually got to see my own GP for probably the first time in 2012, he put me on a new medication to help with the digestive problems.  The medication is a sachet of powder you have to dissolve in water and drink twice a day.  It tastes absolutely disgusting and has already brought on yucky side effects.  I hardly got any sleep the night before Christmas and have still to get a full night. 

I went to my aunt and uncle’s for Christmas dinner and had to pack my electric hot water bottle to take with me.  My plate looked very dull compared to everyone else’s as I had to forgo veggies and ham.  I probably should have laid off the stuffing too but it’s my favourite part of Christmas dinner!! I spend the rest of the day curled up in an armchair hugging my hot water bottle.

It frustrates me when I can’t join in like everyone else.  At a Christmas party the weekend before the big day, I spent the entire night sitting on the sofa and staying away from the food.  I don’t like that I’m now so boring but when I find a comfy position, I have to stay there. 

 

Happily, the countdown is on! I will be going in to have my endo all cut out and I’m so excited! All being well, and dependent on there being a bed for me, I go in on the 9th January to have my op on the 10th.  Santa was very good to me and brought lots of pyjamas and socks for my stay in hospital.  I also got some boxsets to get me through my recovery time at home.

Amidst all this, I have recently gained an admirer who is taking me out for coffee tomorrow. He seems really keen and is a lovely guy. So…watch this space!

How I fought the NHS…and won

Published July 23, 2012 by crazyinpink

Last week I had my laparoscopy and guess what? I have endometriosis!  A diagnosis I had five years ago, only to be told a year later that there was no chance it could have returned.

Three and a half years of unbelievable pain, pain that has affected every area of my life and made me a vastly different person from the girl I once was. But before I get too philosophical, let me tell the tale of my surgery.

I arrived at hospital early last Tuesday morning, apprehensive and in a fugue state thanks to the lack of caffeine in my blood stream.  The nurses did all their checks, sent my Mum off and got me changed into a fetching backless hospital gown and dressing gown combo.  Abandoned in a grey corridor, reading Harry Potter and the Half Blood Prince, I was eventually visited by a member of the surgical team.  As she went through yet another checklist with me, my consultant appeared.  He is the only endo specialist in my area (possibly country, since we’re so tiny) and highly praised by nearly everyone at support group.  My feelings toward him were decidedly mixed.  He was the first gynae to ever really listen, to acknowledge my pain diaries and tried his best to understand what my life is like.  But he also was adamant that I did not have endo.  The first time I saw him, he said it was bound to be endo.  Then, after receiving all my notes and scans from other hospitals, changed his mind.  He would not have operated if I hadn’t demanded it.  Back in January he left the decision up to me.

I made the right decision.  He warned me, sympathetically, that he might not find anything whe he looked inside.  He told me to prepare myself in case there was nothing there.  I must be the only person under his care to go into an operation hoping they find something.  After a frustrated anaesthatist finally found a vein (mine are notoriously difficult to find) we were off.  I woke up in recovery in that wonderful post-anasthetic bliss, barely able to move. I dozed on and off until my doctor arrived to speak to me.  He told me that they found endometriosis on the back wall of my vagina, uterus and all along my pelvic wall. He waited for my reaction.  I asked him to repeat what he had said. He confirmed that he had replaced my Mirena but there was too much endometriosis to remove then and I would have to come back for a bigger operation.  I’m on the ‘urgent’ list as he wants to get rid of it asap.  Before he left, he turned back and squeezed my shoulder, saying ‘You did very well. Well done.’

A nurse came over soon after he left to make sure I was okay and give me some tissues.  I was crying, not because I was upset but with relief.  It was over!  All my fighting was over.  They knew.  They knew that I am ill, that I do have this disease, that I wasn’t making it up, it wasn’t all in my head.  I had finally come to the end of three and a half years of pain limbo.

Of course, it is not great news that I have so much of the disease. The fact that my first lap five years ago removed a small amount on my left ovary yet now my pelvis is riddled with it is not exactly cause for celebration.  I have not given much thought to the implications this will have on my life.  The extensive amount is bad enough but where it is – that’s a whole other matter.  I have so many questions.  Will it hurt when I have sex? Has it affected my other organs? If I ever get pregnant, will I be able to carry a baby in a uterus so scarred?

I’m trying not to focus on these big scary issues.  As they say in How I Met Your Mother, those are things for Future Me to deal with. Right now, I just want to be glad that I finally (FINALLY!!) have a confirmed diagnosis and that they can now do something to help me. I no longer have to fight the system, the doctors, the specialists, the NHS in general.  Now all I have to do is fight this disease.