Monday, 25 September 2017

Advice on hearing those 3 words: "you have endometriosis"

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

End-oh-mee-tree-oh-sis. When I was first diagnosed and this ‘new word’, endometriosis, was first mentioned to me, I had never heard of it before and I knew nothing about it. I was in my own little world - alone.

If you’ve just been diagnosed, I want to tell you that you’re not alone. In fact, there’s an estimated 176 million of us, from all different walks of life, in the same situation.

Sometimes, having a diagnosis can be the best thing. You can feel relief from knowing what’s going on with your body and what’s causing all the issues with it. But, sometimes, it can be a very daunting experience. Doctors never seem to be that forthcoming about what it can all mean, but maybe that’s because they don’t know as much as we would like them to about the personal side of endometriosis, just the hard facts.

Well, newly diagnosed sister, based on my own experience, here’s what you need to do next...

Endometriosis can only be diagnosed via laparoscopic surgery
If you haven’t had this but have been told you have endometriosis, then you need to push for surgery. You will need that definitive answer because it’s really easy to be misdiagnosed as endometriosis has a lot of similar traits to other illnesses. It’s also helpful to ask your surgeon how severe your endometriosis is and where it is in your body.

Get clued up endometriosis
Research what it is, what the causes are, what the symptoms are, what treatments might or might not help - everything! Read as much as you can on your illness. You will need to become your own advocate, because it’s only you that really knows what is happening with your body, so the more you know the better.

Realise that there isn’t a cure for endometriosis and there isn’t one treatment that works for everyone
I’m sorry to be the one to tell you, but our bodies all work differently. Some women will have found that the simplest of things will have helped them, whereas others, like myself, will have tried almost everything and will have still not found any relief. You will be told, even if you are still young, that pregnancy or a hysterectomy will cure you. Well it might bring some relief, but it also might not, but on top of them both being pretty life-altering, end of the line, things to try, they will not ‘cure’ you. Go with the simpler options first. My biggest tip: try everything that’s suggested or keep it in mind to try when the time is right, even when you don’t want to. It might help and it’s that ‘might’ that keeps me going!

Have a look at your diet and general well-being
You need to start looking after yourself, and even if your body wants the comfort of a tonne of chocolate, unfortunately, it’s not going to make you feel any better (in the long term anyway!). As with the treatment side of things above, you might find cutting out certain foods or trying different exercises helps, or you might find it doesn’t. We are all different and what works for one person might not work for another. Be mindful to set time aside for rest and to de-stress too, and most of all, start listening to what your body wants and needs.

Think about your future
Try not to be pushed into any treatments, i.e. hysterectomy or pregnancy, that might rule out your future plans in life. It’s your body after all. Be prepared to think about whether or not you would like children though as different treatment options will depend on your choices. And remember, endometriosis doesn’t automatically mean you are infertile.

Don’t go into denial
It’s happening I’m afraid, you have got endometriosis. Now, let’s be productive and not ignore it. It won’t go away - even if we all wish it would!

Get some support
If you don’t feel you have a support system around you of friends and family, and if you don’t have any support groups local to you, then get online. There are thousands of women willing to talk and support you in return for a little support back.

Speak up whenever possible
It’s amazing how many people you meet in ‘real life’ who have endometriosis and you would never know if you didn’t speak out about the disease. Besides support, you can also help to raise awareness - the more people hear about endometriosis, the more people will understand the disease.

Above all, please don't worry. We're in this together.

You can follow my Endometriosis News column here.


Saturday, 23 September 2017

Follow EMLWY

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Did you know that there is a whole range of ways that you can follow EMLWY and keep up to date with all my posts?

If you click on any of the links on the right then you can follow me on all the usual platforms - Instagram, Facebook or Twitter, where I'll always keep you up to date if there is a new post out.

There is also a black "Bloglovin" logo below all the above where you can follow all of your favourite blogs in one place, instead of having to visit them all separately.

And, finally, there is also a box on the left under "Subscribe" where you can enter your email address and then my latest blog posts will be sent directly to your email inbox!

So, you've got no excuses now! Come on over and say hello!


Friday, 22 September 2017

Nexplanon implant: one month in

I've had my implant in for a month now so I thought I'd give you a little update on it all.

When I had it put in to my arm, I had been on my period for two days already. My period was just it's normal self at first, but, the day after having the implant put in, it ramped up and became incredibly heavy. I'm talking the heaviest it's been in years and I was needing to change pads every half an hour because, sorry to be so blunt, but it was just pouring out of me. The next day it was still as heavy and that morning I almost passed out from it. I was actually sat on the toilet when I suddenly didn't feel right and got this horrible pounding in my ears. If I hadn't have gotten down on to the floor quickly, I would have gone. It was pretty scary. Although I didn't put two and two together at the time, it's no coincidence this happened only two days after starting a new treatment.

My period lasted two weeks and I was in just as much pain as usual. I had a one week break and then this month's period started early and I've been on that for over a week now. This month has been much easier (so far). The pain has been very bad still, on one night in particular it felt like I was having contractions as it was coming in waves, but the bleeding has been reasonably light and I haven't had any new, red blood.

I'm going to give it another few months to see what happens with it and then have a think about going back to the doctors if I continue to bleed. The fact that I'm still in the same amount of pain as when my period is at it's heaviest but I'm actually having quite a light bleed, is a big concern.

Besides effecting my periods I've also noticed a few other things.

My moods have been terrible. The first 2 weeks were the worst as I felt up one minute and down the next. I was incredibly irritable and was snapping at everyone. That's settled a little now I think (maybe Danny would tell you differently!), but I am quite emotional and very sensitive still. I've felt very down over the last few weeks and have been crying a lot - every day in fact. I know it's to be expected because I've had this sudden rush of hormones put in to me, but it is quite hard to deal with when you've felt quite level headed for a good while now.

I've also been getting frequent headaches, a daily upset tummy, my acne is definitely worse already, my breasts are so tender I dread even my t shirt rubbing on them let alone letting my breastfeeding toddler near them, and my libido has completely gone out the window.

So, all in all, I'm just not feeling very good about myself right now.

Oh, and the bruising! Oh, the bruising! It was so bad, I had people coming up to me while I've been out asking what I'd done! And to think the bandage was there to help reduce the bruising! I've popped a photo up above of it at it's worst which was about a week after it was 'implanted'. I've still got some bruising now but it looks more like a pale stain to my arm rather than a multicoloured gangrenous rotting mess!

I know that things should all settle down in time but I'm experiencing everything I didn't want to happen at the moment. It's such an odd feeling when you go from only having your own natural hormones in you to the rush of a hormonal treatment. I feel separate to myself, if that makes sense, and I really don't like it.


Monday, 18 September 2017

Introducing 'Endometriosis, My Life With You', a column by Shireen Hand

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So, I've been keeping something a little quiet from you all (not so quiet if you follow me on Instagram!), but I was contacted by an editor over at Endometriosis News last month and asked if I would be interested in some writing work with them and of course, I jumped at the chance! After submitting some of my work to them, I got the job and I now have my very own weekly column with them!... I'm absolutely over the moon!

My first column has gone live today so you can have a read of it below.

I'll pop the links up here on a weekly basis so you can have a read of the posts. I'm aiming for them to be a little different to the very personal posts I write over here at EMLWY and have a more generalised feel to them.

Endometriosis News is just one of many disease specific publications run by BioNews Services, a leading online health, science and research publication company, delivering daily, targeted news, information resources and social media content.

The Endometriosis News site is an excellent resource with news stories, social clips, information on endometriosis and other columns run by fellow bloggers and those who have experience with endometriosis, so please go on over and have a look and check out the other columnists and their sites.

I've linked everything in the Endometriosis Library at the top of the page, but will pop the links below also...

:: BioNews Services
:: Endometriosis News
:: Endometriosis, My life With You - a Column by Shireen Hand
:: Living with Endo - a Column by Jessica Duffin
:: Jessica Duffin's website: This EndoLife
:: Hot Mess - a Column by Serena Lawrence
:: Serena Lawrence's website: Worship and Tribute
:: Dachshunds & Duvets - a Column by Jessie Madrigal-Fletcher
:: In This Together - a Column by Chris Robson
:: Spoons and Sunflowers - a Column by Kimberli Davino
:: The Pursuit of Healing - a Column by Rebecca Dimyan

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

This might be a little heavy for my very first post but I want to give you some sort of overview of where my experiences with endometriosis come from...

I started my periods when I was 12 years old, back in 1995. They were awful right from the start and I would have terrible tummy aches and would flood without warning because they were so heavy. I always thought it was normal though because that's what friends and family told me.

When I was 21, sex became painful. The doctor sent me for a variety of blood tests along with STD/STI checks but when everything came back clear, I was sent for a laparoscopy and was subsequently diagnosed with endometriosis.

In 2005, at diagnosis, endometriosis was found on my left ovary and on the Douglas pouch behind my womb. At my last surgery in 2013, it was found on my Douglas pouch, both ovaries, bladder, pelvic brim and diaphragm, my left fallopian tube and left ovary were attached to my pelvic wall and then all of that then attached to my bowels. Oh, and my left fallopian tube is also blocked and it’s all stopped me from ovulating... Basically, I’m riddled with it!

I’ve gone from having a painful few days while on my period, to suffering with pain on a daily basis, pain when I go the toilet, pain in not only my abdomen, but also across my back, down my legs and in my shoulder, neck and chest, incontinence, constipation, upset stomachs, fatigue, insomnia, mental health issues, hot flushes and mood swings. When they say endometriosis is so much more than a ‘bad period’, they sure as heck aren’t joking!

Over the years, I’ve tried every treatment option suggested to me and have had all manner of scans, surgeries and medications to help with the pain.

I’ve had 2 laparoscopies, 2 lots of laser surgery and adesiology, tried Zolodex (twice - once with and once without HRT), Decapeptyl with HRT, 3 different types of contraceptive pill, the Mirena coil, the Mirena coil and pill at the same time, the implant and a whole list of pain relief including, Tramadol, Paracetamol, Diclofenac, Naproxen, Nefopam, Ibuprofen, Dihydrocodeine and a TENS machine.

I’ve been to a pain management clinic and have seen a physiotherapist and a pelvic pain psychologist. I’ve also been put forward for experimental treatments usually only given to women with breast cancer, but unfortunately my bones couldn’t take the treatment.

Along the way, I’ve also been diagnosed with endometriosis related pain, borderline osteoporosis, sciatica, fibromyalgia, trochanteric bursitis in my left hip, anxiety and depression.

In 2012, after years of flitting around from one job to another, when I was really starting to make some headway with a career path, I was made redundant. It came at the worst possible time as I was on a period of long term sickness and with my health stopping me from being able to attend job interviews, I had to take some much needed time out, which, unfortunately, I never returned from. 

Endometriosis gave me the joyous gift of infertility too - like it hadn’t already robbed me of a life already. We were overjoyed to be granted one round of IVF and I fell pregnant in March 2014. After a very rocky pregnancy which included a lot of hospital trips and stays, an induction and an emergency c-section, our precious boy was born.

Pregnancy didn’t cure my endometriosis. I know, shocker, right!? I mean, I was told to get pregnant at 21 because it would cure me!... But, sadly, my story is very much ongoing.

So, here I am...

I started writing about my health back in 2011 over on my blog Endometriosis: my life with you. My goal has always been the same - to get that word ‘endometriosis’ out there, for people to see that word and question what it is, to spread awareness wherever I can. And along the way I found that I was supporting other women who were just as lost as me and who, in turn, supported me.

You can follow my Endometriosis News column here.


Friday, 8 September 2017

Feedspot's top 30 endometriosis blogs and websites

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I received an email today from Feedspot to say that EMLWY has made it on to their list of Top 30 Endometriosis Blogs and Websites and I'm really thrilled! It's ranked number 7 alongside some other brilliant endometriosis resources. You can view the list here, but all the other blogs and websites also feature in the Endometriosis Library which can be found at the top of the page.