Reflection - My Story

I'm awake. Awake and in pain. A familiar yet unfamiliar pain that I haven't felt in almost 5 months now.

Rather than get annoyed, I find myself reflecting on the last year and all it's brought me.

12 months ago I was experiencing just the beginning of what would soon become daily agony. I didn't know that I was soon to experience crippling pain that would have me sleeping on the living room floor wrapped in heat pads and blankets, on the strongest painkillers the doctors would give me, all in the hope of an hour or two of sleep before work. Pain that bloated my body and made every day a surprise of whether I'd make it to the end of the work day. Weekly osteopath appointments would just about keep me standing with the back pain and weekly doctor appointments would become more and more frustrating as my suffering fell on deaf ears.

9 months ago was the start of the pain. After 3 months of particularly bad 'womens problems' the pain was no longer just a symptom of an (extended) 'time of the month'. The pain became my month - all of it. And then it became two months. Then three and finally four. Four months of pain that was completely unexplained and the doctor settled upon IBS as the diagnosis from Day One. When each drug didn't work I was given another. Diet advice. Pain relief. No offer of an alternative diagnosis, further testing or anything that would've looked into the real cause.

7 months ago came the first blood test. The first admission that it might not just be IBS. By this point I hadn't slept in weeks and I was so bloated I looked 6 months pregnant. Work was becoming a struggle and I was starting to suffer depression from the constant pain. That blood test showed I had signs of infection in my blood, but no antibiotics were offered. Just an appointment in two weeks time for another blood test "to see if it's gone."

6.5 months ago came blood test number two. All my hopes pinned on this one - something had to show. Something that would explain everything. But life stepped in before I got those results.

Sunday 28th July I was in agony - even more so than usual and I couldn't even sit still. My blanket of heat pads didn't cut it and I rang the NHS advice line to find out what my options were at 9pm on a Sunday night. Within an hour I was at Frenchay Hospital Out of Hours GP seeing a lovely doctor who was probably the first to touch on the real problem. But he wasn't to be the one who would save me. Being late on a Sunday night he advised I visit my GP the next day. So back to my GP I went, for my blood tests to show more infection. And once more I was given an appointment in two weeks "to see if it's gone."

But Tuesday 30th July changed it all. Sat in my mum's kitchen I was in tears, not because of the pain but because I gave up. My family was outraged at the way I was being ignored, but I was just used to it. My fight left me that morning and I resigned myself to constant pain. I told my mum that someone else would have to fight for me, because I just couldn't anymore.

It's funny how the universe knows when you mean it. And I couldn't have meant it more. I was defeated. Within 30 minutes I was white and throwing up. Laying limply on the sofa an emergency doctors appointment was made  for the afternoon. It's funny looking back that I didn't consider it serious enough for an ambulance even at that point. It was 'just IBS' after all.
That afternoon I saw a different GP. If angels exist she is one of them, because she saved me that day. I had a fever on top of the vomiting and I was sent straight home to pack for Frenchay. Something was very wrong.

At midnight after seeing a number of doctors and being sent to a different hospital I was finally admitted to the Gynae ward in Southmead Hospital with a suspected infection of my fallopian tubes. Tears streamed down my face for most of the night, especially at 2am when my mum had to admit defeat and head home to sleep. It was all just too much.

Wednesday 31st July I got my first glimpse of a real diagnosis. A scan showed two cysts - 8cm and 4cm - one on each ovary. My insides were a puzzle; it took them a lot of searching to find my ovaries in the first place as they were up by my bellybutton, touching in the middle. Blood tests also showed I had not one, but two infections. The one that had caused my fever but also a chronic infection that had been around for at least a month by that time. A very nice consultant gave me the news; it was either an abcess or endometriosis. I was put on antibiotics and watched constantly - if it was an abcess and it burst I'd need emergency surgery, but they wanted to wait until the infection was under control before surgery if possible.

I spent the next few days staying positive, meeting each new patient as they came and went and getting to know the nurses. I've never been more grateful for my family (especially my mum and Tom) as not a visiting hour went by that I wasn't surrounded by people, presents and food.

This time 6 months ago it was Thursday 1st August - the day before the first of two operations that changed my life in so many ways. In every way.

Me with presents after Op #1

On Friday 2nd August an exploratory laparoscopy showed I had Stage 4 (severe) endometriosis. I would need another surgery once the cysts had been shrunk as it was too dangerous to cut them out at that point. I was given Zoladex to put me into a medical menopause for 3 months which would shrink the cysts and conversations delicately skirted around the real fear we all had. Would it affect my fertility?

3 months ago I came to the end of a new hell; the menopause was not kind to me. I was angry a lot of the time, depressed the rest and fighting to see an end to any of it. I'd also started on the Endometriosis Diet and combined with the Zoladex September and October were almost pain free for me. In one way I was so grateful for that relief, but in another the hormones took that gratitude from me as I was too emotional to enjoy it. And it still wasn't a solution. Zoladex was just a stop-gap on the way to the next surgery.

On Friday 22nd November I was admitted once more for another laparoscopy - this time to cut away the cysts and any endo they could get to. They were also checking my fertility and making sure all was working okay. At pre-op I'd been told I would be going home that night, but my consultant said it wouldn't be until the next day at least. So mum went off to work to keep occupied and I was taken off to surgery.

That afternoon I came around just long enough to hear the results before sleeping the rest of the day and night. The cysts were gone but they had bad news about my bowel, which was attached to my fallopian tubes. It was too risky to cut them apart, so they'd been left. And in my haze I almost missed it as the consultant said my fallopian tubes were blocked. I sat in shock and at that point I could only muster a few tears. I didn't believe it. Of all the things I thought they might say, my fertility was the one thing I'd been sure of. As the consultant explained further I just stared at her blankly. Once she was gone I could barely keep my eyes open. I knew I should be talking to mum and Tom, but the pull of sleep was too strong and so I sent them home. Sleep provided me with an escape from all the things I just couldn't cope with right then. The next day I was discharged from the hospital and left to the care of my family.

And now here we are, 2 months on. There are still so many things I'm struggling to come to terms with and I think it'll be a while before I do. But this morning has me reflecting on all the things I've overcome. I'm now pain free, completely. I've lost a stone and everyone tells me I've got my sparkle back. Not only am I back at work, my own business is now 3 months old (yup - started before the op!) and thriving. I've started with a personal trainer to regain the core strength I've lost and I'm improving my diet constantly. I've made new friends along the journey too.

With my cousin and sister at Christmas.

But I think the best reward I've had from all of this is the relationship with my family. The support they've given me brings me to tears. There aren't words to describe what it means to me - my mum and Tom never left my side. Mum with her pep talks, her sympathetic ear and her endless patience in waiting rooms. Tom with his bear hug every time it all got too much, his constant support and his endless patience with my mood swings! Kassi with her sunny outlook on everything and her ability to make me laugh so hard I had to curl into a ball to protect my stitches. My grandparents with their endless generosity, helping me with anything I needed and just being there. And not forgetting my Dad who brought me crisps and Rachel who brought me magazines and distraction. I couldn't have done it without them. I still couldn't. They're my support, my inspiration and what keeps me going.

So there's my story. I don't want your sympathy, that wasn't the point. But now you know a little more about me and why I sometimes need a moment to compose myself or have to excuse myself from plans when I get tired. If you know me I hope it's given you insight into why I've been so absent from a social life lately and if you don't know me, I hope it's given you hope. Or at least been interesting to read for a while.

If you have any questions or stories of your own I'd love to hear them. You can leave a comment below or if it's personal you can email me: amirosemarshall@gmail.com

Thank you for reading.

Wheat, Gluten & Endometriosis

As promised, I'll be going into more detail about why you need to cut out certain things when on the endometriosis diet. The list is rather extensive and the explanations for some can get rather lengthy so I'll be doing them as a series of posts rather than flooding you all at once.

Today I'll be focusing on wheat and gluten, as cutting out this particular one has had a huge effect on me already and can be of help even to those who don't suffer with endometriosis.

                             

More and more people are waking up to the evils of gluten and wheat, no longer the healthy staple it used to be thanks to years of genetic modification and pesticide use. Gluten is now used in food production as a binding agent, much like eggs are when you're baking a cake. The problem is that it's new genetically modified form doesn't just bind ingredients in the food - it moves through your digestive system like glue and binds whatever it fancies. It has slowly developed from a nutritious ingredient in almost every area of cooking to something you should avoid if you don't want to incur the nasty list of symptoms it can cause.

The most common symptoms can include;

• Gas
• Bloating
• Queasiness
• Abdominal cramping
• IBS
• Irrational mood swings and emotional problems, even depression
• Fatigue

But if you have a gluten intolerance or an allergy called coeliac disease the symptoms can be much worse; neurological disruption, fibromyalgia, migraines and inflammation & pain in your joints.

As you can see, it's nasty stuff even if you're completely healthy. The problem when it comes to endometriosis is that you may have a combination of disorders that are all fed by wheat, compounding the problem. It's not uncommon to also suffer from Candida (a yeast infection in the gut that is fed by sugar), IBS (irritable bowel syndrome, cause currently unknown) or some level of gluten intolerance (anything from a mild irritation up to coeliac disease) - sometimes all three at once.

The only way to get rid of these symptoms, whether you're just looking for a healthier diet in general or you're looking to ease endometriosis, is to eliminate wheat and gluten (also found in barley and rye) from your diet completely. It's not easy, but it's definitely worth it.

In a study of women with endometriosis 80% found their pain was greatly reduced when they cut wheat out of their diet. This jumped to 100% when they also cut out gluten.

Cutting gluten out of your diet is no mean feat, don't get me wrong. I've now taken to reading the ingredients list on absolutely everything I eat (checking for wheat and other ingredients in the naughty list)! But once you experience the rewards for all the hard work you put in you become reluctant to go back to eating gluten products. Some women find their pain is reduced and some find it disappears altogether, it all depends on the cause of your pain. But in either case it's worth giving it a try - what have you got to lose?

To give you an idea of the difference it can make, here's a snippet of my own experience:

"I have suffered bloating to varying degrees throughout 2013, blaming everything I could think of; water retention before a period, weight gain during a period and IBS just to name a few. I'd attempted to go gluten free a few times and it did show some improvements but never enough for me to think it was worth it.

When I got my diagnosis and subsequently had my op I dropped weight dramatically (2lbs from the surgery alone and then another 6lbs in 4 days when I got home) and the reason for my problems became obvious. Every organ in my abdomen was so swollen that once I'd reduced the bloating I was just revealing the extent of the swelling without realising it (a scary thought!).

Pre-diet I had been eating anything I fancied, partly because I was so grateful to have my appetite back and partly because I knew once I started the diet there would be a lot of things I'd miss!

On day 1 of the diet I was going to the shops, which warranted more than the loose fitting pjs I'd been living in! Since I'd lost so much weight I thought I'd try to put on a pair of jeans that hadn't fit me in 2 years, to no avail. My stomach was still too bloated despite the weight loss.

On day 2 I woke up and looked a lot slimmer in the mirror (my enemy and best friend). This time I was going to visit family and figured it was worth another try. To my amazement the jeans fit. Not completely comfortably, but I could do the button up. I wore them out and everyone said how amazing I looked.

By day 4 I could do the jeans up and had wiggle room. To say I was shocked doesn't even come close.

I'm now on day 7 and my stomach is still a little bigger than I'd like, but my internal organs are still going back to their normal size so it's something I can live with. I'm just shocked at how fast everything went back to normal once I started on this diet! It's definitely worth it for me and I find I don't crave my old comfort foods because I know the consequences."

I'm wary that this post is getting a bit long again, so I'll put the alternatives to wheat in another blog post for you. I really hope this has given you an insight into why so many people struggle with wheat and convinced you that it's at least worth giving it a go. Experts recommend 2 weeks gluten free to get it out of your system and see the real effects, so don't get disheartened if you don't see results immediately. :)

Let me know your thoughts in the comments!