Wednesday, 31 January 2018

My story: Chloe Waterfield


I wasn’t sure how to begin my story, but now seemed an appropriate time as ever. It’s just before New Year’s Eve, and I will admit that this year I’m looking forward to my last one as a single woman by staying in with wine, a good movie and the best company. On the other hand, even if I wanted to go out and party, it’s not happening this year.

My endometriosis journey started almost four years ago, on paper, at least. I’m 26, but like so many other women with this condition, the clues were there from the beginning. Cramps that couldn’t be resolved by normal painkillers, doctors telling you it’s normal or ‘it can’t be as bad as you’re saying it is’. I’ve been on the pill since I was about 18, at my mum’s recommendation - she’d heard that it can help bad periods, but she’d never heard of endometriosis. It didn’t seem to make any difference though.

At age 23, something suddenly seemed to switch on. I’d been having periods that had been gradually getting far worse, but after this particular one, I was left with a deep, burning and very unpleasant pain in my right hand side, quite different to the usual cramps and pains I’d experienced. I waited a week after my period, two weeks… But the pain stayed there and gradually intensified over a period of months. Three years on, and that pain never really went away at all. 

Fast forward a few more months and the pain got much worse. Hospital visits, ultrasounds, several GP's and gynaecologist's later and I was diagnosed with mild endometriosis on my bladder, both ovaries and in my pouch of Douglas. Nothing was removed, ablated, burned or whatever: it wasn’t deemed necessary I suppose, and I didn’t have a say in the matter. I was immediately started on Zoladex - the course of six hormonal injections that throw your body into menopause. This is a chemotherapy drug. It did not help my pain and gave me a whole host of unpleasant symptoms. Not worth it.

Day to day, symptoms are at best uncomfortable. At their worst, the smallest of tasks such as popping to the shops, running an errand or walking the dog become impossible. Having a chronic condition, you can’t be angry at yourself for the things you can no longer do, and you should never feel guilty. If you need to rest, rest, if you need to sleep, sleep, and if you think you deserve a treat, then you do!

It’s about adaptation. I’m in pain around three weeks out of every month, so I take things slower than I used to. I don’t do much exercise, I don’t wear heels, I take household chores slowly, and some days, I just have to admit defeat and do nothing. I’ve realised that it’s about doing what you can, on days that you can, and as an artist this means painting when you can, and planning and thinking when you can’t. Instead of standing at the easel, sit. Instead of breaking my back over a massive canvas, I’ll sit and paint some light and easy watercolours instead.

Another key part of endometriosis is having someone who understands. I’ve never said ‘sorry’ so many times in my life, yet as my fiancĂ© always reminds me: you have nothing to be sorry for. Sometimes, all you need is a hug, a hot water bottle and some great company.

I was always a home bird, more than a social butterfly, and this helps as it avoids people asking too many questions when you stick outside of the crowd, or you don’t attend this or that, or you’ve simply taken a chair at the back instead of dancing. A little part of me wishes to be more open about my condition: this isn’t ‘bad periods’ or ‘women’s trouble’: it’s a real and life-altering condition. I hope by sharing with you, I’ll encourage you to share more, and hopefully encourage myself too.

Next year (hello, 2018) I’m trying to use the words of Monty Python and ‘look on the bright side of life’. I’ll be getting married to the love of my life, and then off for a South American adventure. Endometriosis may not want to take a back seat, but we’ll deal with it as it comes.


Thank you for sharing your story Chloe.

If you would like to contact Chloe, you can follow her on Instagram @chloewaterfieldart or on Facebook Chloe Waterfield Art.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.
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Monday, 29 January 2018

My endometriosis hospital bag

Image courtesy of http://bit.ly/2FpR0xb

:: This column was originally posted on Endometriosis News ::


If having endometriosis has taught me one thing, it’s that it’s totally unpredictable. I’ve had numerous unplanned trips to hospital where I’ve been caught out and not had anything with me that I need. Over the last few years, I’ve kept a bag at the ready which can be grabbed as I’m leaving or brought in later by a relative.

If you want to get organised and prepare in advance for any impromptu hospital trips yourself, here’s what I keep in my ‘endometriosis hospital bag’.

The bag
The bag itself needs to be sturdy and of a reasonable size. It’s also preferable to have one that is made of a wipeable material as they can get quite dirty.

Toiletries
You don’t tend to get much time to wash yourself in hospital and, to be honest, who really feels like making all that effort anyway!? To save on time and space, you will need to pack the bare minimum. Most toiletry items can be bought in miniature travel size bottles but try to think sensibly and cut back where you can.

The things you cannot go without are: something to wash your face and body with, something to wash your hair with, and, finally, a toothbrush and toothpaste. Instead of packing lots of separates, try buying things that have dual usage. You can wash your face with shower gel. Try a 2 in 1 shampoo and conditioner instead of two separate bottles. I keep one single moisturiser in my hospital bag that can be used on both my body and face. You will also need things like lip balm, deodorant and sanitary products. I also like to keep a spare toothbrush in my bag in case a family member has to stay overnight at the hospital with me.

Clothing
While on a ward you tend to wear nightwear and I keep a few changes in my bag in case my stay is longer than expected or they get dirty. One thing I’ve learnt when it comes to nightwear in hospital, is that you’ll need something that isn’t too warm but covers you. You don’t want to be falling out of your top or have the person in the bed opposite peering up your night dress all day long! You also have to remember that there will be visiting hours and having a lot of people around while you are sat in your nightwear isn’t always that pleasant! A short sleeved top and pyjama trousers are the best option but you could also pack a robe.

You’ll need a change of comfortable clothes for when you leave the hospital. I like to keep this really basic: a t-shirt and leggings are perfect! Finally, you will need plenty of comfortable underwear, some socks to keep your feet warm and a pair of slippers for walking around the ward in. Some people also find it preferable to pack a pair of flip flops to wear in the shower.

Medication and recent hospital notes
Obviously, these cannot be kept in your bag at all times. Keep any important health related paperwork and medication in an easy to find location so you can grab them as you leave the house, or a family member can find them in your absence. However, it’s not essential to take hospital notes with you as everything should be on the hospital's computer system.

Other items you might want to include
I like to keep a few plastic (reusable) bags in my hospital bag in case I have any soiled clothes. Hospitals will always provide towels but you could pack one in your bag so it’s there when you need it. Some hospitals have access to wifi and bedside televisions which require a prepaid card, and there are sometimes little carts going around each day that sell snacks and magazines so it’s helpful to keep a small amount of cash in your bag in case you want to buy anything, or in case any of your visitors need change for car parking or food. You could also keep a few snacks and a bottle of water in your bag.

You can follow my Endometriosis News column here.

S.
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Saturday, 27 January 2018

Nexplanon implant: 5 months in

Image courtesy of http://www.opendoors.nhs.uk/content/contraceptive-implant

Just a quick update this month because my body has been a bit all over the place and I don't really know what this implant is doing, if anything, anymore.

One thing though... When I went in to hospital, I didn't have my tablets with me for a few days, so I didn't take my pill. The day after I got home, I got really bad period pains and started bleeding heavy, red blood. So it looks like the Desogestrel is helping, because I don't have such heavy, painful bleeding with that as well as the implant... Though it hasn't stopped the bleeding.

Hopefully, this will be my last update and by this time next month I'll have this useless piece of plastic out of my arm.

S.
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Friday, 26 January 2018

A sudden onset of pain


If you've read my recent column or you follow me on Instagram then you might have already seen why I've been a bit quiet recently. But, if you haven't, then let me fill you in...

On Tuesday 2nd January, just over 3 weeks ago now, I started to feel really poorly. I initially thought I'd just over done things as I'd walked Hunter back and forth from pre-school 4 times, and by the afternoon I was absolutely exhausted. Danny could see I wasn't very well when he walked in from work and I ended up bursting in to tears not long afterwards because I felt so rough. I went and got in to bed just before 6pm and after having some Paracetamol to reduce my soaring temperature, I finally got to sleep. However, I had horrible stomach cramps which kept me awake for the majority of the night.

I spent most of the next day (Wednesday) sleeping. I managed to eat a bite of toast and a few dry Cheerios, but that was only because Danny forced me! Beyond that, I really couldn't face anything but water. I started to think I had food poisoning. Stupidly, I had eaten some smoked salmon on the Monday morning that was supposed to be used by the previous day. It had smelt and looked fine - and it tasted lovely! But I've had food poisoning before (the reason why I no longer eat shop bought prawn mayonnaise sandwiches - thanks Somerfield!) so I recognised the symptoms.

I started to feel much better on the Thursday and even managed to eat a little bit of food... But then I spent the rest of the day on the toilet! Yeah... I'll spare you all the details on that! But, let's just say, it wasn't pretty!

I thought I'd got it all out of my system by early evening, but then I got the worst wind you have ever heard! And I'm not talking trumping or burping. It was the sound of it inside me - it sounded as though a volcano was going to erupt! Of course, any wind always hurts my endometriosis, and I believe that's what happened on this occasion.

By about 9pm that night, the pain was continually increasing and nothing was helping. Danny called 111 after I had a high temperature suddenly start and they booked me in to our local walk-in centre. I think I got there about 10pm and after an examination, they thought it was my appendix. I was referred straight on to the hospital and by the time I arrived there, I was screaming with the pain. It was tearing through me with every bubble of wind.

The nurses promptly gave me some morphine and slowly, the pain started to ease. I couldn't tell where it was emanating from, but it seemed to be more centred on my right ovary area. I was too poorly to go for any x-rays that night and since I was still in so much pain, and my blood pressure was so low, they kept me in to run tests the following day.

The next morning, the pain was much easier and the wind had greatly reduced. But I was still not right. I was kept on Paracetamol, Codeine and anti-sickness tablets too because I was so nauseous. I had been nil by mouth since 10pm the previous night and was only allowed sips of water to take my tablets with, so I was hooked up to a drip from the moment I arrived.

A team of doctors came to see me and they seemed to think it was my appendix still so they sent me for 4 x-rays, an ultrasound scan, a transvaginal scan and a CT scan, as well as blood tests and a pregnancy test. They also gave me a dose of penicillin through my drip and, thankfully, after a lot of rest, things calmed down.

My test results all came back clear so no one knew what was happening. They didn't seem to listen when I spoke repeatedly about my endometriosis and how I thought it was that. In fact, on my discharge letter there is no mention of endometriosis - instead, under pre-existing conditions, they've written PCOS which, unless they know something I don't, I haven't got!

I was discharged without needing surgery and got home late on the Friday night.

I was still very tired after returning home and I didn't feel well at all. I was given anti-sickness tablets and painkillers to continue taking at home, but I felt so sick still and had no appetite. I had another bout of diarrhoea on the Saturday and then didn't go to the toilet for a week! My bowels did return to normal after this though.

I started to gradually feel a little better and went out for a few hours on the following Thursday. It was only a very slow wander in town, but after 3 shops I was like a zombie. I couldn't think straight and I didn't feel myself. I spent the rest of the day relaxing at home but by the evening, a new round of pains started.

These pains were completely different and the only way I can describe them is that they were like contractions. They started in the middle of my lower back, spread across my tummy which tightened, I had period type pains lower down and then it would all ease and come back again a few minutes later. At the worst point, it was coming back every 3 minutes but luckily, they eased after having a whole heap of painkillers and using my TENS machine.

I had this happen repeatedly over the next few days. I thought it was something I was eating, and I started to cut out dairy which helped a little. It didn't seem to really correlate with anything though, so I couldn't tell when it was going to happen. I still had no appetite, but as the pains eased slightly, I was managing to force dinners down - even if I couldn't face barely anything in the daytime. I lost 6lbs in the first week this all happened!



On Tuesday (23rd January), this week, I decided to go and see my doctor. I'd finished the anti-sickness tablets I'd had and the nausea had come back full pelt - which meant my appetite went out the window again. The pains were also still coming and going and I generally felt really poorly.

My doctor had all my notes from the hospital and said she could see why I had thought it was food poisoning and later my endometriosis. She thinks the problem is that my bowels are spasming. Normally, your bowels will spasm in a row to push out your poo. However, it sounds like mine are just spasming all over the place, randomly, and this can create pains exactly like contractions.

Now, she didn't know why this was happening. It could be due to a few different reasons. I'm waiting for the results now to come back on a few tests to rule out anything inflammatory such as crohn's or colitis, and any infections or cysts. If they come back clear, then it could be from the food poisoning (or gastroenteritis - whatever it was!) having upset my system, irritable bowel syndrome or - and this is the big one - my endometriosis causing problems with my bowels, which my doctor thinks is highly likely.

At my last surgery in 2013, I didn't have endometriosis on my bowels. However, the big clump that had joined my ovary and fallopian tube to my pelvic wall, had also attached itself to my bowels. That was released during the surgery, but whether that's causing problems itself again or whether it's because I have endometriosis located nearby that is irritating my bowels, I don't know.

For now, my doctor has given me some Cyclizine anti-sickness tablets (these are different to the Ondansetron tablets I was previously on as they could only be issued by the hospital) and Mebeverine anti-spasmodic tablets. I also have to start on a course of probiotic powders.

So far, I've not had any bowel pains (yet!), just endometriosis pains (I think anyway - it's all getting a bit confusing in there!). But I'm still feeling really nauseous and my appetite is all over the place.

I should get my test results back next week and then I see my endometriosis consultant on 6th February (with a bit of luck, on the day this all kicked off, I had a phone call cancelling my appointment which was originally booked for 4th January - the day I went in to hospital!) so it would be nice to see her knowing if this is all because of my endometriosis or not.

I'll keep you all posted.

S.
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Monday, 22 January 2018

When other health problems affect your endometriosis

Image courtesy of http://bit.ly/2DCoaN0

:: This column was originally posted on Endometriosis News ::


I haven’t had the greatest start to 2018. I had food poisoning on the second day of the year. Nothing that remarkable really. I’ve had it before and I’m sure it won’t be the last time. However, this time, something else happened too. Instead of leaving my system a few days later, it flared up my endometriosis.

I ended up in hospital because I simply couldn’t take the pain. It was tearing through me and no amount of grabbing at the hospital bed mattress and screaming was stopping it. Eventually, after a large assortment of painkillers, the pain dulled. The hospital thought it was my appendix but countless x-rays, scans and blood tests didn’t show anything. I was given penicillin, fluids, some more painkillers for good measure, and was discharged the following night. Although I still felt very poorly, I could cope with it.

I thought that would be it. A few days of rest and I’d be back on my feet. But, over 2 weeks later, I’m still spending the majority of my days in bed, curled up in terrible pain. And when I say ‘terrible pain’, what I actually mean is contraction type cramps. In fact, one Saturday night was spent rocking back and forth, curled up on the floor of my bedroom, with the pains coming every 3 minutes. They start in my lower back, spread all across my abdomen and I get what I would call ‘normal’ period type pains too (you know, that dull type of ache all around your ovaries). Exactly the same as a tightening contraction. I spent a lot of time doing and feeling the exact same thing when I was pregnant, but I certainly didn’t think I would be feeling them when I wasn’t pregnant! 

This isn’t the first time my endometriosis has landed me with a surprise trip to hospital. 6 years ago this month, I woke up in the middle of the night and instantly knew something was wrong. I didn’t feel ‘right’. I went to the toilet, but that didn’t help. I tried taking some painkillers. That didn’t help either. Shortly later, I was screaming the house down with the pain. The same thing happened: rushed to hospital, pumped full of drugs, given all the scans and, eventually, sent home.

However, that time, looking back at least, I knew something was coming. I’d been under a massive amount of stress at work, planning a major awards night for the company I worked for. I was working longer hours, rushing here there and everywhere in between. I was even dreaming about it! There were also a few other factors that didn’t help at that time, and it all eventually culminated in my endometriosis feeling like it wasn’t getting enough attention!

This time though, did take me by surprise. No real stress. No real amount of exertion. Just a completely unrelated ailment that you would never think could affect your endometriosis. But, I knew as soon as it happened, that it was indeed my endometriosis.

The doctors didn’t really listen to me when I spoke about endometriosis. In the end, they put it down to ‘non-specific abdominal pain’ which, I guess, was correct really. The pain was so bad I couldn’t tell what where it was emanating from. I’m now finding that I’m super sensitive to certain foods. I’ve already had to start cutting out dairy because it was making me feel so sick and I have no appetite whatsoever. I’m simply eating because I need to. But, if I had the choice, I could easily go without food.

Six years ago my endometriosis turned my life around, and made me realise how much it can actually effect. Six years on, I’m recovering in the exact same way.

You can follow my Endometriosis News column here.

S.
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Tuesday, 16 January 2018

5 ways to prepare for a consultation with your doctor

Image courtesy of http://bit.ly/2DzI9JD

:: This column was originally posted on Endometriosis News ::


Doctors appointments are few and far between at times - even though we might feel like we spend our lives at the doctors office! A mixture of brain fog and a sudden bombardment of information might mean we leave without the feeling of accomplishment we had hoped for.

To help you make the most of the short time you are with your doctor, here are 5 ways in which you can prepare for an appointment.

1. Keep a diary or notes of your pain and symptoms
Keeping a pain diary is a really useful way of tracking your symptoms. It’s also a great way to show your doctor how your pain differs throughout the month and if it correlates with anything i.e. exertion, diet or your period. This can be especially helpful when you have symptoms that you’re not sure have anything to do with your endometriosis. For example, shoulder pain (which could indicate diaphragmatic endometriosis) isn’t something you would usually think of in relation to endometriosis because of its distance from the abdomen where the majority of endometriosis symptoms occur. However, if it correlates with your period, then there is a good chance that it might be related to your endometriosis. You can keep some simple notes, keep a diary specifically for your health or track your pain using a specialised app on your phone.

2. Plan what you want to discuss
I always find that doctors appointments can be a bit rushed and everything you had planned to speak about just goes straight out the door. The best way to get around this is to plan what you want to speak about. Try writing your points down. It doesn’t need to be an essay - just a few bullet points that you can glance at quickly. There is nothing worse than leaving an appointment and then remembering something you should have spoken about!

3. Take any medication with you
Doctors will always ask what medication you are currently on. This is to check if it’s the best option for you or to see if it can be combined with new treatment options. It’s best to take all of your medication with you, but you could also write the names and dosages of the medication down.

4. Take any recent hospital notes or letters with you
Doctors should have all of your (relevant) medical history to hand in a file at your appointment. However, I’ve attended appointments where my last set of notes haven’t been put in to my file and then both me and the doctor have had to try to recall exactly what was spoken about. I now take any medical notes with me so I have all the information to hand should I need it.

5. Don’t be afraid to ask questions
Doctors will give you a lot of information in a very short space of time. If there is anything you don’t understand, ask questions while you are there. What’s the plan for the future with regards to treatments or further surgeries? What side effects will a treatment cause? Will this treatment interfere with any other health conditions you might have? Ask questions about fertility if that is on your mind. The main thing to remember is to not feel afraid or embarrassed to ask. Your doctor is there to help you, so please don’t leave their office confused.

You can follow my Endometriosis News column here.

S.
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