endometriosis

All posts tagged endometriosis

Uh…shouldn’t I be completely pain-free and saving the world by now? Or, what it’s really like adjusting to post-surgery life

Published April 29, 2013 by crazyinpink

When I had my op in January and my doc removed 99% of the nasty endo monsters inside, I figured it’d take me a while to recover and then I’d be the new and improved me. I’d be wearing jeans every day, eating whatever I wanted, able to do a million things a day, maybe I’d even save the planet.

untitled (13)It would be AMAZING being pain-free, right?

 

 

Well…it hasn’t exactly turned out like that. For one thing, I’m nowhere near saving the world. I still haven’t had even a single slice of pizza. I certainly cannot wear jeans every day.

In reality, I can’t even say that I am pain-free.  Don’t get me wrong, I am not in pain the way I was before, nowhere near that in fact. If my previous pain levels were around 9 or 10 (which they were towards the end of 2012) my current levels average around 3 or 4.  I’m not saying I don’t appreciate the dramatic reduction of pain in my life because I do. So much.  Pain doesn’t consume my every waking thought now.  It’s more like an annoying half-remembered task in the back of my mind that I have to get around to eventually.  Since my surgery I’ve had complications which are probably stopping me from being the kick-ass superhero I want to be.  My triumphant return to the world post-recovery was marred by a Bartholin’s cyst.  The antibiotics gave me thrush and made me sick.  Returning to my studies brought consistent back pain.  The last month or so I’ve been having problems with my bladder which I’m starting new antibiotics for today.

So yeah.  I haven’t really progressed as much as I’d have hoped.  Perhaps it was naïve of me to hope at all.  I know endo is an incurable condition yet still I prayed that my op would bring relief.  I dreamed of living like other 20-somethings, having spontaneous fun, wearing jeans that actually fitted me, being able to do things all day without the need for a nap or rest, not having my schedule dictated by my medication. I’m an optimist I guess.

I’m not complaining though. My op has dramatically improved my quality of life. I don’t need as many painkillers now so my head isn’t as fuzzy as once it was. I’m able to do things that would have proved impossible before Christmas. I was able to go and have my little English adventure. Since February I’ve only had 2 days when I literally couldn’t get out of bed.  I’ve dusted off jeans my size and worn them cautiously for a few hours at a time.

I’m not exactly Superwoman yet. And maybe I never will be. Being perfectly healthy doesn’t sound like something that will ever happen to me. I know that. I know that my future health is uncertain. I know I’ll worry about having sex and how much pain it’ll cause. I know it will probably be difficult for me to conceive naturally. I know that more treatments and procedures are in my future. I know that I’ll need a Dish to understand what my spoonie life is life.  I know I’ll keep trying to raise awareness of this condition that changes so many women’s lives.

Maybe that’s all I can hope for.  A life not perfect or pain-free but having the strength and the right tools to face whatever life throws at me.

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Getting cocky

Published March 21, 2013 by crazyinpink

After my last post about wearing jeans, I got a little bit too cocky with my rediscovered denim abilities.

I spent Saturday morning at a dorky history thing (which was actually pretty interesting) and topped and tailed it with a bit of retail therapy and lunch with a friend.  I wore jeans all day.

By the time I got home, in the snow I might add, I was feeling the pressure. I immediately had to change into pyjama bottoms as soon as I got into the house. I then spent about an hour curled up on the sofa watching some Barbra Streisand movie about two professors who get married for companionship, then she falls for him but he isn’t attracted to her.  I have no idea what the movie was called or how it ended cause I had to force myself upstairs to make a fancy dress costume.

My friend had a Middle Earth themed birthday party. As someone who has never read or even watched the Hobbit or any Lord of the Rings, I was pretty clueless. I decided to go with Legolas so I googled a picture, borrowed a bow and arrow from a friend and tried to recreate Orlando Bloom.  It didn’t actually go too badly, I put in more effort than some people.  It was definitely fun traipsing down to my friend’s house in the snow holding a bow and arrow!

Having just walked with nothing but my phone and keys (and bow and arrow) I didn’t have my pills on me and thought I could do without them.  It had slipped my mind that I’d thought the exact same thing the night before.

On Sunday morning, my body was not amused. The jeans and the no drugs brought back pain I hadn’t felt in weeks. I spend Sunday and Monday in bed, unable to do much.

I’ve learnt my lesson and have been diligently taking all my drugs at the right time. I haven’t gone back into jeans, I’ll leave them for shorter outings and not try to wear them all day for a while. I don’t want to jeopardise recovery by being stupid and getting cocky…

“It’s not about you!” or being selfish when you’re chronically ill

Published February 19, 2013 by crazyinpink

I felt like screaming at him “Shut up! It’s not about you! You haven’t done anything. I don’t even care about what we’re talking about. I’m just sore! It’s nothing to do with you!!”

Moments like this, although not frequent, are familiar to those of us living with chronic pain and especially an invisible illness. Something changes inside you and you go from being normal to suddenly having pain or discomfort. If you’re in the middle of something, your whole demeanour changes.

I go quiet, I concentrate on even breathing and my posture ranges from hunched over to leaning back – anything to try and ease the pain.  When this happened on Saturday, in the middle of a day of conference organising with Best Friend, he immediately thought he had done something wrong and went on the defensive.

It’s happened before and it’ll happen again. Best Friend isn’t the most confident person in the world and, in his socially awkward ways, assumes he is to blame for any slight change in my attitude or appearance.

Last year, during the most awkward weekend of my life, I cried in front of him while we stayed in a B&B in Ireland. For months he kept on about it, asking me to tell him what he had done wrong and why he had upset me. It was only in a surge of embarrassing boldness, I finally told him that I had an abscess that weekend which was causing me considerable pain and discomfort and I couldn’t have told him that when we were there.

Sometimes, I feel so helpless about what my body does without my permission. I could be fine, working away, smiling, spending time with friends and two seconds later, my insides are spasming and it feels like a rusty hook is dragging across my pelvis. There’s no big announcement or event that precipitates the change. There are no signs. It just happens. But the timing sucks sometimes.

So it happened on Saturday, while going through a budget for our conference, a cyst that I had only noticed the day before became so angry and determined to disrupt my relative peacefulness.

Best Friend and I have a weird kind of relationship, where we’re close enough to share everything but only at certain times. If I volunteer information, he usually recoils and feels awkward. I have to keep it until he asks, only then do I know he’s ready to handle it. And he does ask, eventually.  He’s been so good during the last few weeks, phoning me every day, sending me cards. When I returned to the office for the first time on Friday, he spent all day hugging me and, for the first time ever, kissed me on the cheek. He was truly happy to see me.

Now that this cyst has reared its ugly infectious head, I know I’m more tired, more grumpy and less “me” than usual. My body is fighting an infection while its still recovering from having stuff scraped out of it.

I tried to tell him I was sick but, in his head, I’ve had an operation and so I should be better.

I know I’m being selfish but I just felt like yelling at him. His insecurities irritate me and I don’t really know why. He is only trying to help, he cares about me and wants to know what he has done to upset or annoy me. But, right now, its not about him. Its about me.

 

Of course, even saying that makes me feel worse. 100% Bitch.

Back into the swing of things

Published February 14, 2013 by crazyinpink

It’s now time to re-enter the world after my post-surgery ‘hibernation’ of the last month.

I have a lot coming up over the next few weeks and, while I should have been back at university last week, the extra week at home has really convinced me that I am recovered. With any previous operations, and particularly the one last July, I was so anxious not to miss anything that I hurried my recovery.  When will I learn that my body likes a slower pace?! So, this time, I did it properly. I had my daily salt baths, I didn’t leave the house for a full two weeks, and after that, I paced my recovery. I went to church for an hour. I visited GB for half an hour. I’ve been slowly building myself back up and I feel better than ever now.

At the weekend, I did my first outing without my mum, who has been my constant nurse, companion and chauffeur. My Toyboy drove me to the cinema to see Les Mis. I was so disappointed I couldn’t go see it the minute it came out since I’m such a musicals nerd. But Yay! I got to see it and it was amazing!! I may have fallen a little bit in love with Mr Revolutionary. Something which Toyboy, who was watching it for the second time, had predicted would happen.  But seriously, how could you not swoon with this face and that determined stare?

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Anyway *recovers from swooning* I was all set to go back to the office on Monday when my car wouldn’t start. My car is literally running on wishful thinking, it’s so old and, like a grumpy old man, only does things with a lot of moaning and groaning. This time, I had to get a new battery, which took a few days. Thankfully, I have more than enough work to keep me occupied at home but I am looking forward to getting back to the big world.  And just in time too. There is much happening over the next few weeks.

This weekend is marked out for conference organising.  It seems like only yesterday I was complaining about the committee and all the politics and now, its only two weeks away. Our call for papers closes tomorrow so the weekend will be spent choosing the papers, organising panels, assigning chairs. Basically it will involve a lot of lists and hopefully, some arts and crafts. 😀

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Next week, I have a meeting of the Pain Alliance of Northern Ireland. As I’m the unofficial poster girl for chronic pain, I’m being trotted out to speak to politicians, etc. There’s free food though. Then academic obligations kick in. My research project is hosting a one-day workshop on poverty (exciting, huh?) next Friday. We’re taking the visiting speakers out for dinner on the Thursday night. Which also happens to be my birthday so I’m spending it with a bunch of historians. What a fun way to celebrate my 24th!

Hopefully, I’ll get the chance to meet up with some of my girlfriends for a wee cinema trip over that weekend and see my family. Because the next week is going to be full-on panic mode in the countdown to the conference. Which is another weekend gone. I’ll be so glad when it’s all over and, fingers crossed, all has gone as it should.

Next up in my diary, an interview for an online broadcast on endometriosis. Part of a series on chronic pain but an episode will be focussing on endo specifically and, handily, it’s being recorded during Awareness Week!

That weekend features bag packing in a local supermarket with my GB girls to fundraise and then a church concert.

I am so glad I’ve booked a little holiday to England at the end of March…I think I’ll be needing a break by then!!

untitled (3)LONDON BABY!!!

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.

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!