Monday, 30 October 2017

Endometriosis and infertility, part 3: 10 tips for surviving

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

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


So far in my Endometriosis and Infertility series, I’ve spoken about the emotions you might face while you are trying to conceive and those you might face post-baby. In the third and final part of this series, I want to offer some advice that I found helpful when we were trying to conceive.

1. Don’t blame yourself
Infertility isn’t your fault and self blame only leads to self hate. You have no control over how your body works - some things are, sadly, out of our hands, so be gentle with yourself. You have enough emotions weighing you down right now without this added guilt.

2. Allow yourself to feel a myriad of emotions
Infertility will leave you feeling every emotion going: anger, guilt, sadness, distress, grief - the list goes on. Understand that it’s OK to feel however you may be feeling. Infertility might be one of the most difficult things you’ll ever have to go through and facing up to these emotions will make the journey much easier.

3. Communicate with your partner and make time for each other
When you're going through infertility, it’s easy to live your life in a bubble and lose focus on those closest to you. However, your partner is travelling this road with you and they might be feeling the exact same emotions. Talk to your partner, understand how they are feeling and share how you are feeling. Set time aside to spend together and reconnect - go out for dinner or a movie, or sit with each other at home. You need to gather that strength from each other to get through every single day. It’s you two in this, together.

4. Similarly, work with your partner
When it comes to fertility treatments such as in vitro fertilisation (IVF), it can feel like it’s you taking the brunt of it all while your partner get the easy part. Talk to your partner about the medications or different parts of the treatment, and how you feel about them. You could also get your partner involved in the process; for example, if you are self-administering injections, let them help. 

5. Communicate with others around you
Your family or close friends may not fully understand what infertility can mean or what someone going through it will face and, sometimes, this can lead to things being said that might cause upset. It might also leave you feeling like you have no one to turn to. It’s all well and good putting on a brave face, but if you bottle all of these emotions up, others might think there are no issues. This can only lead to you feeling more alone. Let other people in and let them give you that support. They might be able to help you with this turmoil you are facing.

6. Find other outlets of support
I, personally, found it very difficult to speak to those around me about our journey with infertility. I didn’t want to face those raw emotions. However, I found it really therapeutic to write those feelings down. For me, I blogged about it from start, to finish, to those emotions resurfacing post-baby. If you find it difficult to talk to others, or you don’t feel you have anyone around that you can speak to, try writing these feelings down in a journal, type them into a blog, or get online and find others in a similar position. You could also ask if there is any counselling available that coincides with your fertility treatment.

7. It’s OK not to attend difficult social events
You are not obligated to face anything or anyone that will make this journey more difficult for you than it already is and others should understand this. For me, I couldn’t be around my friends babies and, at times, I had to stay away from social networking. If you do attend a difficult situation, try to enjoy yourself and take time out by leaving the room if you need a moment.

8. Ask questions and get informed
Learn everything you can about infertility. What is causing it? Can the cause be treated? What fertility treatments are available? If you have any queries, ask away.

9. Look after yourself
Try to take time out for yourself. That might be time pursuing hobbies, a trip to the salon or just some time with your own thoughts. Whatever, might help you, do it. And remember, it's not selfish to look after yourself.

10. Realise that your options don’t end at infertility
Adoption and surrogacy are just two of the many alternative avenues to becoming a parent, and, though these alternatives might not be how you imagined parenthood to begin, they are options you can explore.

You can follow my Endometriosis News column here.

S.
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Wednesday, 25 October 2017

My story: Sarah Dunwood


Some days my pain is so excruciating that it takes every little last bit of willpower I have to drag myself out of my bed and face the world. Those days used to be a few out of every month, now those days are every day. I know the cause of my pain. I know what the solution is. I know when that solution is coming and it is only a few weeks away, but time seems to somehow dilate and those few weeks seem as far away as the stars and planets that I stare at on those few cloudless nights we have in the grim north!

So here is my story. Long and tedious it may be, but it is my story nonetheless and it is time that I put it all down in one place.  

I am nearly 40. I feel it. In fact, add another 20 years on... That's how I think I feel. This state of mind is not normal for me but it has been the status quo for over 2 years.

You see I, like many other women, have a condition called endometriosis. It is often a silent condition that goes unnoticed and can often cause very few symptoms. It is frequently misdiagnosed and from my research, it can take many years for a firm diagnosis to be achieved and treatment to be secured. In the meantime, that long wait can cause untold damage, not only physically, as in my case, but mentally and emotionally too.

Rewind 21 years. I was at university. I was not a social butterfly, not confident as such. I certainly didn't get overly involved in the social scene at uni. I got on with my work, attended my lectures, occasionally went to the Thursday night 'disco', but really, kept to a small group of friends who I met. Why?

Every few weeks I would be plagued with horrific period pains. Pains that rendered me speechless. Doubled over. Often fainting. It was embarrassing and terrifying and I really didn't want to be around people when that happened.

I had investigative surgery - a laparoscopy and hysteroscopy and nothing was found. The results were duly sent to my GP who tactfully advised me that with most 'women's problems' they were resolved with pregnancy and maybe I should consider having a child. REALLY? 19 years old, 1 year into university, a career as a teacher planned out. Quality advice there.

I learned to live with it. Hiding usually worked. But at least back then it was limited to just a few days a month.

I got older, I got married, I had my one and only child when I was 27.  

Prior to my pregnancy and for a few years afterwards, I used the contraceptive pill. My pain, bouts of fainting and such like disappeared as such - certainly they were not a monthly focus for me and so there was a significant chunk of time where I did not think of it. I thought of other things instead... Particularly the dawning realisation that my marriage was an epic disaster (but that is another story).

My marriage ended. I met someone new. Life was sweet.  

I came off the pill aged 35. February 2008.

In October 2008 I went to see my GP - I had trouble getting comfortable at night. If I slept on my left side I felt like something was pressing on the inside of my pelvis, if I rolled onto the right, I had a horrible dragging sensation. I needed to go to the toilet with the frequency of an older man with a prostate problem. The pain was back, but not the fainting. Still, it was focused to a few days, each month.

I was sent for an abdominal ultrasound, which showed nothing. I know now that for my condition, it wouldn't have showed anything. Nothing there, nothing is up with you. Pretty much. I was told it was probably IBS (Irritable Bowel Syndrome) and to watch my diet.

Time passed, a proposal came, a wedding was planned. We said our vows in April 2010 and neither of us expected that "In sickness and in health" would come to pass quite so quickly.

A few months later I was recalled following a smear test. Abnormal cells. Colposcopy. That was pleasant.

Then, less than a year from our wedding, I returned again to my GP - I was exhausted, constantly. Hot flushes some nights. Frequent sleep disturbances and a persistent nagging pain in my pelvis that caused me to be fidgety, uncomfortable and distressed for much of my time. The pulling/pressure sensation was back with a vengeance and MY GOD - the PMT and subsequent few days were just horrific.

Early menopause I was told.

Menopause doesn't cause pain. No matter. A symptomatic approach is taken to diagnosis I was told. My symptoms indicated menopause.

Some days the pelvic pain would change, become acute and it really started to impinge on my daily life. I tried to manage. It's difficult when you are a teacher. Doubling over in pain and howling is not considered good form in the classroom - not if you are the adult anyway!

I returned to the GP - saw someone different - and was referred again in October 2011 for another ultrasound.  

Yep, you guessed it - nothing there. Aside from the fact that they didn't do a pelvic but did an abdominal, the ultrasound was not going to show my condition (that I didn't yet know I had).

At my wits end, my GP decided to refer me to a consultant gynaecologist at my local hospital. However, I had to wait and go through 8 weeks of pure hell before my GP was allowed to make the referral. Peer review within the surgery meant I would not be referred unless I first consented to taking the mini pill for 3 months.

No choice.

After 10 days, I started bleeding. I bled for 42 days straight. I was exhausted, suffering from extreme mood swings and what I now understand was depression. I once considered that maybe it would be better if I wasn't here. Just once. THAT was enough and I stopped taking them and demanded my referral. I got it.

I thought an end was in sight. My family and friends rallied and supported and we all looked forward to finally knowing, having an answer and therefore being able to do something about it.

I attended the appointment. The consultant was 30 minutes late for the first appointment of the day - mine. She rushed in, didn't listen, made a miraculous diagnosis without so much as an examination, told me that she was going to adopt a particular cause of action - a treatment - and that we would have to wait at least 6 weeks for that to take place, and another 6 months for it to settle and see if it resolved things. It did not seem to matter to her that what she was prescribing as (in her words) "a miracle cure" was not for the symptoms that she was PRESUMING but that I did not have. This rush job was topped off with an cervical biopsy which was agony and frankly unnecessary, having only just had my annual smear test two months earlier. I was dispatched for blood tests and left feeling shaken. No mention of diagnostic surgery. Just treatment. For something that manifested itself differently than the symptoms I had.  

That same day, when I had regained my composure, I contacted another consultant gynaecologist and arranged for a private appointment a few days later. I needed a second opinion.

Thank goodness I did.

I explained all of this. I was told that the only way to really assess what was happening was laparoscopy. I felt better for knowing that my distrust and anger at the treatment in the previous week was based on my own good understanding, not just a reaction for the sake of it. The consultant contacted my GP, she referred me to him and I was back in the system.

The answer came in October 2012. The cause of my pain is scar tissue. Not just little bits, but effectively the equivalent of an extra womb in my pelvic area. My left ovary and fallopian tube are encased in the scar tissue, which has also encroached into other areas and has headed towards my left ureter. That, combined with extensive endometriosis, means that my pain is unsurprising and, to my relief, very very real.

The sadness is that if all of this had been spotted somewhere earlier along the way, if it had not been masked for many years by the contraceptive pill, if I had been referred sooner, seen a different consultant on a different day, then I might not now be facing the daunting prospect of a full hysterectomy, along with the removal of the ovary and tube that is now dead and potentially the other one if it isn't healthy. I wouldn't be waking in the night in a cold sweat dreaming about all of the terrible things that could go wrong. I wouldn't be so consumed with chronic pain and acute attacks at random times that going to work everyday is like climbing a mountain and worrying about getting back down again. I wouldn't be agonising over the time that I am now having to spend away from my students, about colleagues having to step in for me. I wouldn't feel so desperately guilty about the time that I have not spent with my husband and my son in these last two years. I wouldn't be considering writing letters to my loved ones, just in case. That in itself is a terrifying thing to admit that you are considering.

In 6 weeks, exactly 6 weeks today, I will be coming round from my surgery. I hope that it will be the start of me becoming me again.

I don't like what I have become.


Sarah kindly sent me some updates to her story....

Update number 1: 6 weeks on.
I have now had my surgery... I'm 5 days post hysterectomy. Along with a pile of other procedures including excision of the endometriosis, removal of left ovary and tube, right tube and removal of a pile of scar tissue from the endometriosis and peritoneal disease. Interestingly, even though I am post op, I feel so much better!

Update number 2: 4 years on.
Since 2013, I have had 3 further surgeries. After a few months pain free, my pain started to return. So, I have had 2 excision surgeries and then, last summer, just over 3 years on from the hysterectomy, I had my remaining ovary removed. So, for 14 months I have been in full blown menopause. It’s not great, but it’s better than pain. However, I have developed an as yet undiagnosed autoimmune issue - waiting for my rheumatology consultation at this point. My GP thinks it may well be as a result of the years of pain, surgery, medication etc. Still, it’s not as bad as how things were for me before 2013, so there’s reasons to be positive, even now. 


Thank you for sharing your story Sarah.

If you would like to contact Sarah, you can follow her on Twitter @hebs1973.

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, 23 October 2017

Endometriosis and infertility, part 2: post-baby

Image courtesy of http://bit.ly/2yJv93v

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


Last week I spoke about infertility, the journey to conceive and the emotions you might face along the way. This week, I want to talk about some of the emotions you might face post-baby.

We were incredibly lucky in everything we faced with regards to infertility. I know, it might be hard to believe with facing infertility at all, but I do truly think we were lucky. From the short time we were trying to conceive before someone noted we needed help, to the fact we were even granted a round of in-vitro fertilisation (IVF), right through to it working, despite only having that one single blastocyst, we got our baby. Some couples aren’t so lucky, and I thank my lucky stars every single day for our little boy. However, that was our chance and we won’t have another.

One thing I wasn’t prepared for after having our son, was the continued grief. I think many people presume that the feelings that surround infertility, magically go away when you have a child. But, let me tell you, they don’t.

For me, it all started with how we got our baby. I was surrounded by new mothers who had faced the joyful surprise of pregnancy through natural means, but I didn’t have that. Instead, I went through a process where every step was planned down to the day, sometimes, the hour. I went through injection after injection, intrusive scan after intrusive scan, and that hit me hard when I finally fell pregnant. We didn’t succeed in creating our baby by ourselves, just the two of us. There was a whole team of doctors and scientists involved. We even had to leave our embryos behind in a hospital lab for 5 days. I won’t ever get the chance to nervously think ‘could I be pregnant?’ and trot off to the shops to buy a pregnancy test with that fearful excitement in tow. It was all taken out of our hands.

I fully expected that after having a child, any thoughts of more children would disappear. I quickly realised that it was just a natural urge that you can in no way control. Something I should have realised sooner after 2 years of trying to conceive. However, after a somewhat traumatic pregnancy and labour, the thought of having another child honestly scared me. But there was also another reason why thoughts of having another child were, eventually, pushed to the back of my head. I had wanted our son for so long and we went through so much to get him; I never wanted anything to get in the way of that love. These thoughts promptly morphed into a simple yearning to go back in time and relive his newborn days again.

I longed to go back to those winter nights where we were wrapped in a blanket, curled up together all night because he didn’t want to be anywhere else but with me. To nuzzle my nose into his neck as he slept on my shoulder and smell that milky newborn baby smell. I desperately wanted to hold that little body of his again. With the daze of having a tiny person depending on you 24 hours a day, lack of sleep, recovering from labour and the whirlwind of visitors; that period of time passes without you even realising it and before you know it, it’s gone. I would still give anything to just have a moment of that back again.

As our son grew, I slowly started to realise that the things we experienced together, I might never get to experience again. While other parents are packing away all of the outgrown baby clothes for the next baby, we were selling those things. Being practical really, but it became hard when we had to part with things that held memories. Moments together we would never get to experience again. His first words, first actions. As a breastfeeding mother, I’m still holding on to these fleeting moments of just us. When we stop, that’s it. That one last thing that makes him still my baby - when we stop he’ll be my little boy. All grown up.

Infertility doesn’t leave you when you have a child. I’m certain there will be many more trying moments.

It really is the grief that keeps on giving.

You can follow my Endometriosis News column here.

S.
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Friday, 20 October 2017

Hug reusable wraparound heat pack


I was contacted a few months ago by the lovely Fiona over at Hug and asked if I would like to try one of their reusable heat packs. Now, you know me, I love anything that's even a smidgen like a hot water bottle, so of course, I jumped at the chance!

Here's the important stuff...

So... What is Hug?
Hug was created by product designer Fiona Bennington and is a wraparound, wearable heat pack that adjusts to different waist sizes. It is filled with pearls suspended in a gel liquid. You can wear Hug directly against the skin as it has a velvet lining that doesn't stick. It is discreet, practical and doesn't feel heavy to wear.

Hug is designed to offer soothing comfort for a variety of ailments, including
:: shoulder/neck relief
:: stomach/back pain
:: shoulder pain relief
:: c-section recovery
:: period and pelvic pain
:: migraine relief
:: headache relief
:: back/spinal relief
:: breast pain relief
:: joint pain

... But, it can also be used to simply keep you cool on hot days, or warm on cold days!

How to use your Hug
Hug can be used warm or cold. For a cooling sensation, simply pop your Hug in the freezer for an hour. For a warm Hug, simply microwave as shown in the video and diagram below.

There isn't any other way of heating Hug - please be aware of this if you don't own a microwave!



Hugs temperature is dependent on you. However, there is a warning indicator on the heat pack which changes colour at 45°C and personally, I wouldn't heat it anymore than the recommended amount. Plus, you can heat it again as soon as it has cooled.

How to wear your Hug
You can see the range of ways Hug can be worn, here.

Hug adjusts to different waist sizes with easy to use velcro straps. It fits from an 80cm waist up to 111cm which is similar to a UK ladies size 8 up to a size 20. Hug also offer a reduction strap for sizes below 80cm, and an extension strap for sizes beyond 111cm - both of which can be purchased separately to the heat pack.

The video below will show you how to wear and adjust your Hug.


Why should I try Hug?
Low level heat therapy has been proven more effective as pain relief than over the counter pain killers, and much better for your body too!

Where can I get a Hug?
You can purchase the heat pack, accessories and gift packs from Hug's online store, where, currently, they are including a free gift with every purchase if you shop with them directly. Alternatively, you can purchase the heat pack alone on Amazon. The Hug website also offers international (for outside of the EU and UK) shipping.

Anything else I should know?
You can find more information on Hug via their website or by visiting their Twitter or Facebook pages.

Hug recently took home the first prize in the Engineering category at the Invent 2017 Awards so it's now an award winning product!

The story of Hug was featured on BBC Radio Ulster on Tuesday 17th October 2017 which you can have a listen to here if you are in the UK - flick through to 15:55 if you don't want to listen to the whole show! Their story will also be featured on the BBC1 Made in Northern Ireland series on Monday 23rd October 2017 at 7.30pm. If you're in the UK, you can watch it on the BBC iPlayer - just find the episode (series 2/episode 4) under the 'Northern Ireland' category.

Sounds good, doesn't it? Well, it is good! 
I love a hot water bottle or my beloved (electrical) heat pad, but they aren't practical if you are moving around or need to leave the house. Hug is the answer! It's wearable and fully adjustable so it won't fall off or hang loosely. It sits reasonably discreetly too, though, obviously, it will show if you are wearing a skin tight outfit - you could always wear it on top of your clothes though and show it off!

I really love that it wraps right around you, meaning the pain is covered from all angles. This is great for endometriosis pain because, if you're anything like me, when my tummy hurts, my back hurts too (what doesn't hurt!?). I also loved the way it feels - the little pearls are really soothing and give almost a massage type effect. It's quite satisfying to fiddle with when it's cooled down too!

Hug is fully reusable which means, once you've bought it, that's it! No running out when you need it. No not being able to get to shops to get some more. No more cost.

I also liked that it has instructions printed directly on the heat pack, so, no trying to find loose instruction papers all the time! Having had a run in with a gel hot water bottle in the past from which I have a lovely scar on my leg from where the hot gel leaked out, I'm quite a stickler for when it comes to instructions for this type of product. The warning indicator on the heat pack made me feel reassured but, I have to say, the edges of Hug are really well sealed also.

So, that's my opinion!... Would you like a chance of winning a Hug all for yourself? Head over to my Instagram and find out how!

S.
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Monday, 16 October 2017

Endometriosis and infertility, part 1: trying to conceive

Image courtesy of http://bit.ly/2gf04ue

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


It might be hard to believe, but prior to being diagnosed with endometriosis, I didn’t want children. I was still quite young but, I was determined that children were not something I wanted for my future.

It was only when the pain I was suffering from was being investigated, that it dawned on me that I might not be able to have children. For me, that’s when everything changed. This realisation made me automatically want, not so much a child, but an answer: “Could I have children in the future?”. I spent the majority of my 20’s yearning for this answer and it never went away. It was present when I was alone, when I stepped outside the house and at night I dreamt of it. It was everywhere I went.

I would speak about it often, but it was an odd position to be in because I didn’t want a child at that age. The only hope my specialist could offer was that it might be possible, if my endometriosis stayed how it was post surgery. But it didn’t.

We started trying for a baby 7 years after I was diagnosed. Without knowing, I began my journey through the stages of infertility: denial, anger, bargaining, depression and acceptance.

I think that no matter what your health is like, whether you are fit, or suffer with illness on a daily basis; when you do eventually start trying for a baby, you expect it to happen. Even with my extensive and aggressive endometriosis, I still thought that I would get pregnant straight away.

When you don’t get pregnant in the first month of trying, your hopes change. I thought, we just needed to try a bit longer; it doesn’t always happen straight away, right!? But, deep down, I knew.

After 8 years of not knowing the answer to my question, and 1 year in to trying for our baby, I found out that one of my fallopian tubes was blocked. A few months later, I found out that irreversible internal damage caused by my endometriosis, along with me not ovulating and my blocked fallopian tube, meant that our 18 months of trying to conceive was futile. I couldn’t have children naturally.

I had always assumed that having this answer, would make the situation easier to deal with; that I could move on. Obviously, it didn’t. I was devastated.

It was near impossible to hide my grief. It made it difficult for me to see friends and their children. I was jealous and angry towards anyone around me that managed to get pregnant - with ease or not. I became very bitter; congratulating fellow endo sisters pregnancy announcements through tears and back-handed compliments (“Congratulations! That’s fab news that you didn’t have to go through fertility treatments!”). How could I be happy for others when my body wouldn’t work like theirs!? Why wouldn’t my body work like it should!? I’m female - isn’t this what I’m made for!?

A pelvic pain psychologist I saw during this time described infertility as being on the same psychiatric level as that of stillbirth. Two completely different situations unified by an ever-present grief that is never resolved and keeps on giving. And it did just that.

My journey wasn’t long in comparison to others though. We were granted one single round of in-vitro fertilisation (IVF) after two years of trying to conceive. We got 10 eggs, 8 of which fertilised, 1 of which survived. No embryos made it to freezing. We had 1 single chance at having a baby… And he was the toughest little blastocyst we could have ever wished for and he grew to be the most incredible little boy. Our little boy - our miracle.

If you are facing infertility, please be gentle with yourself. Allow yourself to feel this myriad of emotions. Realise it’s OK not to attend social events which will leave you in pieces. Communicate with your partner. Ask questions. And, although I would always usually encourage finding a support system either locally or online, be careful because these places might well trigger all the emotions you are trying to avoid.


You can follow my Endometriosis News column here.

S.
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Monday, 9 October 2017

Taking back control

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

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


I recently started a new treatment for my endometriosis and had a Nexplanon Implant put in my arm at the end of August. I have to be honest, I didn’t want it. I had been free of any contraceptives for just over a year, my acne had settled down and, although my endometriosis pains were getting progressively worse again, it felt nice to be the one in control of my own body for once.

I spent a long time considering the implant and after speaking with my doctor and her explaining that she didn’t think it would help me due to my past history and the way my body has reacted to similar treatments previously, I decided against it. However, I saw my consultant at the hospital shortly after this and she explained that I had very few options left with regards to treatments. As always, I felt a little backed into a corner, like I didn’t have much of a choice, but we drew up a plan together to start at the easier end of the scale before we, eventually, think about surgery again. The ‘easier end’ being the implant.

I assumed the implant would give me similar side effects to the Mirena coil that I had back in 2010 - and still had in when my endometriosis flared up back in 2012 and left me in the state I am now. I thought it might affect my appetite, might make me a little nauseous, that it would affect my libido, skin and possibly, my weight. And, it has affected my libido and skin, but that’s most likely because it’s making me bleed much more than usual. That’s something the doctor can (hopefully) help me with though. I can take an additional pill alongside the implant which should stop any bleeding, but, at the moment, I still need to let the implant settle in.

I am finding a few things difficult to handle though, and, mostly, it’s that I no longer feel like myself.

I have noticed a definite shift in my moods. I became very irritable almost immediately, and by the second week, I felt like there was a black cloud hovering over me. My anxiety went through the roof, and, for someone who has only had mild anxiety before, but also felt very level-headed over the past few years following a bad stint of depression, it’s hit me quite hard.

It’s not the first time I’ve felt like this after trying out a new treatment for my endometriosis. I’ve had 3, 6-month rounds of Zolodex (Goserelin) and Decapeptyl (Triptorelin) before and they really effected my mental state. In fact, I would say they have been some of my darkest times... It’s funny what a few chemicals can do to your head.

It is a difficult position to be in though. Treatments will always have some effect on you or your health in one way or another. Take, for example, the majority of the treatments that I’ve tried for my endometriosis - they have had a negative effect on my bone health, but, the things that will help my bones are the things that are bad for my endometriosis. It really is a vicious circle! But, what can we do?

One thing I’m trying hard to do is combat these negative feelings. I don’t want to cry every day or worry about any and everything. I want to feel like ‘me’ again. So, I’m taking back control now. I’ve realised this isn’t me, that it’s the implant making me feel this way, and with that, I’ve been able to think of both sides of everything. Am I really feeling this anxious, or are my feelings heightened by this treatment? Am I really feeling sad enough to cry myself to sleep each night, or is there in actual fact, nothing to worry about? I’ve been getting out the house more for chilly autumnal walks, I’ve thrown myself in to writing and I’ve been more productive with my days - not staying in bed in the mornings, making sure I make the most of each day.

I won’t have yet another treatment controlling me.

When you’re in this situation, my only words of advice for you are: “find yourself again”. You are not what this treatment is making you. Hormones will change you; you just need to hold on a little tighter to the reigns and not let go. 

You can follow my Endometriosis News column here.

S.
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#MakeItVisible


Would you look at these photos and think that I am sick?

I certainly look a little dishevelled in the photos on the left, but you can't see my illnesses. You might assume I am more likely to be ill there in comparison to the photos on the right though, where I have done my hair, put make up and a nice outfit on. But, again, you can't see my illnesses. 

You might presume I am completely fit and able bodied... But, I'm not.

I suffer with endometriosis, fibromyalgia, borderline osteoporosis and a range of other health and mental health issues. You cannot see my illnesses because they are invisible.

I am in pain, fatigued and on medication in both photos. Even if you cannot see it, even if you think I am making it up, even if you don't think at all; I am sick.



This month, I am helping Healthline promote their #MakeItVisible campaign. They have partnered with the US Pain Foundation to shine a light on invisible illnesses.

We want you to share your stories on Twitter, Instagram, Facebook or Pinterest (basically, anywhere you can share an image!), and help the world understand that you are battling an illness, even though you might not 'look sick'.

For every photo you share with #MakeItVisible, Healthline will donate $5 to the US Pain Foundation.


Let's get sharing and help break the stigma that you have to look ill to be ill!

S.
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Friday, 6 October 2017

A little update and a brand new look


I didn't realise it had been quite so long since my last personal post! It feels like it's been forever!

So, hopefully by now you will have seen my exciting news - I'm now a columnist over at Endometriosis News. I did a quick post on it and have been adding the links every Monday to my newest columns, but, just in case you've missed it somehow (honestly, not sure how you could have because it's all I've been banging on about recently!), the columns are all linked in previous posts or you can click on the 'Endometriosis News Column' tab, under 'EMLWY & BEYOND', at the top of the page which will take you straight to my column.

I've really thrown myself in to all things writing recently, and you might have noticed that EMLWY has had a BIG makeover! I made it a .com a few months ago and felt like it was a good time to make everything look a little bit more grown up... Didn't quite realise how much work I'd made for myself behind the scenes though! It took me one whole day alone to get the 'Celebrities with Endometriosis' post looking how it should (by the way, it's had a massive update and has 9 new faces on it so head on over and have a look!)! But, it's almost all sorted now, just a few more bits and bobs to do. So, please have a little look around - there's some new drop down menu's and pages at the top, and lots of new links have been added to the 'Endometriosis Library' which is always a work in progress by itself! I'm really feeling proud of how everything is looking - you know, the type of proud where you have to keep looking at it all the while! It might not look much to anyone else but when I started writing EMLWY back in 2011 (Wow! It's almost 6 years old already!), I had no idea it would someday be like it is now.

Aside from all things internet...

If you follow me on Instagram, you would have probably seen that we went on holiday at the end of August. We went down to my parents caravan, as we do every year, but this year was so much fun. Hunter gets so excited about going on holiday now and we took him to a few new places and just had the loveliest time. Honestly, I used to get quite stressed out at the prospect of going away when he was tiny, but it's just the best now! I think we were all a little sad when it was over and done with!

We haven't done much else exciting recently really, but we did have our first date night out in about 4 years a few weeks ago! It was our first time leaving Hunter in the evening and we went out to see It at the cinema... We were back just after 9pm to eat pizza in bed but we had a good night!

If you read my last implant update then you will know I've not been having a great time with it. I wrote everything over there really, and I don't want to say too much at the moment because I'll be doing a 2 month update on it all in a few weeks but, yeah, I'm struggling with it all. I'm still on the same period I was at the end of that post - it's been over 3 weeks now and with only a 1 week break between that and my previous period, I'm pretty exhausted/frustrated with it all. I'm quite used to continuous periods (Hello! 7 month period!) - it's annoying but I'm hoping that this added pill that the doctor told me about will help to stop it. I'm just not sure at the moment when I should see the doctor because, although she left it totally up to me (we were both prepared for this not to work!), I know the implant needs some time to settle in. The worst part so far has definitely been the anxiety it's brought on though. I'm not sure why it has heightened it so much, and as someone who's only had what I would say is mild anxiety that's never been an issue before, it's hit me quite hard. I've been trying my best to distract myself away from it all so I'm just hoping that will also settle down soon. Pain wise, I just don't really know. I'd say I'm probably in as much pain still but it's probably more spread out rather than hitting me hard in one week and then tailing off and building back up to that week. But we'll see... I'll keep you all posted though.


I had to start taking some more tablets back in July to counteract the constant sore throats the Naproxen was giving me. I now take Lansoprazole first thing every morning before eating anything, and, touch wood, I've not had any sore throats since.

I had some good news back in August regarding my benefits... I've been awarded them as per usual and I'm still in the Support Group which means I don't have to attend anything work related!.... You wouldn't believe how relieved I was to read that letter - I'd been worrying about it since my assessment in July. I expect I'll be hearing from them come January again anyway if they are going to still be on my back like they were pre-tribunal!

I had a few weeks off of Slimming World at the end of August. I had gotten myself in to a bit of a rut of maintaining my weight every week, which isn't a bad thing really, but I'd lost all motivation. I decided to enjoy our time away and stop worrying so much over numbers on the scales. It worked wonders and, to be honest, I was looking forward to getting back on to it at the beginning of September. However, I fell in to the same rut again. Part of me thinks it's because I've got to a point with my weight where I can't shift any more - bar 2lbs, I'm at my lowest weight in forever! But I found it hard before when I was coming up to the final few pounds. I've also been struggling a bit because I was missing certain foods - some bad foods I was just craving because I wasn't allowed them so I'd end up scoffing loads if I got the chance, and some which aren't in any way bad for you, but aren't 'Slimming World friendly'. Because of all the tablets I'm on again now, well, I've gotten a bit blocked up (again)! It happened before so I was expecting it, but not being able to go to the toilet when you're trying to lose weight isn't going to help matters! While I was on holiday, I started eating muesli with dried fruit and nuts in for breakfast each day and I was going to the toilet once, even twice, three times a day! But, going back on plan, I had to go back to eating something different for breakfast because I was only allowed 30g of muesli for my Healthy B Choice which was only a few spoonfuls so it wasn't worth it at all! I realised my body was trying to tell me something so I've come off it again. Slimming World was great for losing weight, but I'd lost 22lbs, I'm still below my last target weight, and I've dropped a dress size, so why keep pushing myself when I don't need too? I want to be able to eat 'healthy' things again like avocado, dried fruit and nuts etc without worrying about syns all the time! Seriously though, some of the things you can't have on Slimming World are just odd - like smoothies for example. It's just fruit right? But no. You can't have it because it's not in fruit form! I had a little splurge for the first half of the past week, but I've been watching what I eat for a few days again now and I've started calorie counting. If I can still have free reign over what I eat and lose weight then that's ultimately the goal. But, as long as I'm not piling anything back on and maintaining my current weight, then I'm happy. Anyway, I'll keep you all updated.

I haven't really spoken about my fibromyalgia for a while now and that's because it's not really been bothering me at all. I still get days where I'm aching a little bit more than usual or a bit more tired than usual (take for example, the day after we went to the cinema - it wasn't exactly like I was out partying, but it sure felt that way the next day!) but it hasn't been completely knocking me out like it has done before. It's odd. I feel like it's in a total lull at the moment and I didn't think you got that with fibromyalgia - I thought fibro is pretty constant. It's just another reason why I don't think I have fibromyalgia at all. But, I see my rheumatologist in a few weeks so I'll be discussing it all with him then.

I've been worrying a little about that appointment because I know that last time he said that if my T score's had gotten worse this year then I would have to start on medication for osteoporosis (oh, just on a side note, I noticed that I didn't get my last set of T score's so I'll try and get them when I see him so I can let you all know what's exactly happening with it all). I was also a little concerned when I got a copy of the letter my endometriosis consultant sent to my doctor just to update them on what had been discussed at my consultation, and she had written in that about my 'mild osteoporosis' even though I thought I was still in the borderline section of the scale... So I want everything clarifying when I see my bone doctor!

Anyway, I think that's you all updated on what's been happening over the last few months!

They'll be a new column on Monday and I have a few more posts lined up for next week also... AND a little competition! So keep your eyes peeled folks!

S.
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Monday, 2 October 2017

Finding the positives

Image courtesy of http://bit.ly/2Fc1MXH

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


You might have clicked on this column, full of curiosity, wondering how anyone could ever find anything positive about this disease and all it entails. Well, let me explain…

I have a really lovely life. I’m not showing off or anything, but I do. I have a beautiful little family of my own - a loving partner who works extremely hard to support us and a very energetic 2 year old who brings laughter to each and every day. We live in a nice house, and, although it’s not our own, we have made it ours. We go on a good old British holiday every year. I own nice clothes, albeit the majority of them thrifted. There’s very little I want for.

So, why am I in mourning for my previous life?

Some might call me selfish. I might have everything some of you are wishing for. But, occasionally, my mind wanders back to my old life and the possibilities of what I could have now, had I been able to continue on that path.

I was diagnosed with endometriosis when I was 21, and, although I had some very low moments in the ensuing years, I was working towards a successful life. I had a career which generated a good salary, which in turn enabled me to have a car of my own, get out and about, see friends regularly and afford whatever I wanted. All of that was progressing me towards a better place. I could have eventually bought a house with my partner, we could have maybe gotten married, holidayed abroad every year, bought whatever we needed when we needed it. But, endometriosis took that away from me.

At 28, with no prior warning, I found myself in hospital when my endometriosis flared up, and at that moment, everything changed.

I could no longer work, could no longer drive, could barely walk anywhere, let alone get out and about. I was on a cocktail of prescription medications which left me dozy and unable to focus on anything, and, over time, the problems with my health just seemed to escalate. I became dependent on those around me and with that, I lost myself. I have never regained what I lost.

Had this been my choice, I would have had no problem with my life changing so drastically. But, it wasn’t. I felt imprisoned in my own body, like I was looking out on this whole wide world but unable to reach out to it. Everything I had in my embrace previously, now was just out of reach.

Can you imagine what that is like?

I am incredibly thankful for what I have now and I am probably more grateful for it now then I ever would have been before, because none of it has just been handed to me - I have worked so hard for every single aspect of it. I have worked so hard to maintain some semblance of a life, because I could have sank into a pit and lost everything.

And that is exactly what has lead me to find the positives in my endometriosis. Even writing this, it sounds obscure - positives in endometriosis!? Am I mad!? Has all this medication finally gone to my head!? In fact, I originally titled this piece “Why I am thankful for endometriosis” but I’m not thankful for it, not in the slightest. However, I’ve had to find some positives in all this. I can’t mourn the past and the ‘what-if’s’ forever.

Endometriosis has given me a new perspective on life, a new life. In a hugely long winded roundabout way, it made me a mama. It’s given me new opportunities to write and support others in similar circumstances, and made me realise what, and who, is important. It’s stopped me being the flighty girl I once was, made me more mature and responsible.

Was I really happy before or am I just looking back on my previous life with rose tinted glasses? Would I have really gotten everything I wanted or would I have worked myself into the ground to get it? And, I must remind myself, I still had endometriosis back then. Even though it didn’t cause me as many problems as it does now, it was still there. There were still occasions it ruined. Still times it got me into trouble with how much time I missed from work.

Endometriosis dealt me a new hand, lead me down a different path. I will never know where that old path lead, but I am bountiful in all I have now.

You can follow my Endometriosis News column here.

S.
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