Endometriosis

My Endometriosis Story

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Endometriosis is a disease that is currently doing its best to ruin my life.

I have progressed from intermittent flare ups to being in pain 24/7.  And that’s not just a dull ache – it’s absolute pure agony.

If you want to know more information about the ins and outs of Endometriosis, then head to one of my first published pieces.

Endometriosis is a gynaecology condition where cells that normally line the womb start to grow and spread elsewhere.  They implant themselves and grow and grow, sometimes so deep that they develop their own nerve and blood supply.  They react to hormones in the same way – becoming inflamed and causing internal bleeding. Endometriosis is an inflammatory condition, meaning scar tissue and adhesions easily form and these alone can cause problems by attaching organs to each other and distorting anatomy.

No one really knows the exact reason Endometriosis develops and I have heard multiple theories, but the most interesting one is from my current specialist – they believe at their specialist Endometriosis centre that you are born with Endometriosis cells and it’s an autoimmune response that causes them to mutate, spread and grow.  It’s main symptoms are incredibly painful and heavy periods, clotting and symptoms such as fatigue, bladder/bowel problems and fertility problems.

My periods first started when I was 11-years-old.  They started when I was in school, but thankfully my mum had prepared me by giving me a handful of feminine hygiene products to put in my bag.  I even remember talking to my friend telling her how painful my first one was.  Little did I know that this was going to be for the rest of my life.

It took a while for my periods to fall into a cycle, but the only two things I remember about them during my teenage years was how heavy and painful they were.  I had incidents where it felt like I had suddenly wet myself, only it was blood, and I would need to go home frequently to get changed or carry spare underwear with me.  Nighttime was even worse – I’d bleed all over my bedding and have to change in the night, often waking with the pain or being covered in blood.  Those large overnight pads were what I wore in the day, as I flooded and would loose huge clots.  I’d have to double up when I got to the age of wearing tampons as I’d bleed through them within an hour or two, and tampons themselves were painful but I thought that was normal.  And the pain.  God the pain was so intense I’d be glued to a heat pad, popping over-the-counter medication like no tomorrow.  It would make me feel lightheaded and faint when the cramps hit out of nowhere.

I was placed on the combined oral contraceptive pill at around 16 or 17 years of age,  because my periods were a such a nightmare and I would be heading off to university.  The pill did nothing but put me into a regular cycle – the bleeding was just as heavy, my periods were just as long and the pain was just as bad.  When I got to university, I would dread practical sessions during my period as I didn’t want to have an accident.  I bled through my student physiotherapy uniform on more than one occasion.  I was needing to change my sanitary items so frequently I couldn’t keep track.  And as I got older, my period was joined by urine infections and strange bowel symptoms.  I was regularly anaemic because I lost so much blood.

By the time I started working, my period pain was something I would dread.  I would often have packets of the pill back to back to avoid them.  I would avoid doing things like swimming or dancing out of fear of bleeding everywhere and it became common practice for me to sleep on a towel.  I would even organise staying at my boyfriends (who is now my husband) house outside of my period because I felt so uncomfortable with my heavy bleeding and bad pains.  I’d often have to stop myself passing out with my patients and wore as many pads as possible to reduce the effects of flooding.

The frustrating thing is, I never knew I had Endometriosis – I had no inkling and didn’t really know anything about the disease.  That’s why I never pushed for a diagnosis.  At every doctors appointment I attended, they told me my symptoms were “normal”, part of “being a woman” and “my pill wasn’t strong enough”.  Even when I saw consultants for my bladder and bowel symptoms and we spoke about my periods, they just reinforced the “normalcy” of it all.

You see, in the couple of years leading to my diagnosis, where I saw several doctors, attended A&E and was under the care of various consultants, my bladder and bowel symptoms were really just red herrings to what was really wrong.  I was experiencing such regular urine and kidney infections and bloody diarrhea that this was all that was focused on – and that was the right thing to do, but when everything was coming back normal and my periods were getting more and more out of control, they should have listened.  I remember my parents asking for someone to have a look inside me even before it was offered because I was so unwell.

Eventually I went private and paid to see a consultant close to my parents that had been recommended, and it wasn’t until she trialed me without any form of hormones that someone finally listened and believed that everything was linked to my periods.  I was booked for a laparoscopy and operated on within weeks.  I even have a memory of my mum and me looking at each other and shaking our heads when the possibility of Endometriosis was mentioned.

My first laparoscopy in early 2016 identified Endometriosis.  It was found in all sort of places and was worse on and in my bladder – it had infiltrated itself throughout my pelvis.  It was found between my uterus and bladder, on my bowel, left ovary, ligaments and fallopian tube.  I had adhesions that distorted my bowel and attached it to my pelvic wall, as well as some that pulled my bladder, uterus and ovaries.  It was everywhere and my insides were a mess.

I had this Endometriosis ablated, and only the deeper bits excised.  I didn’t know anything about ablation versus excision back then. When I came round I was told it was Endometriosis and that was that – I wasn’t educated about the disease or even advised that it would come back.  I was told to take a progesterone-only pill and my then boyfriend (now husband!) and me were told not to hang about with getting pregnant because it would be hard (because of my Endometriosis) and that the next step would be remove my left ovary, before finally a hysterectomy.

After my first operation, I spent my time learning about the disease that was inside me and quickly learnt that it would inevitably return.  I was lucky to have a GP that really understood Endometriosis and began to help me manage it.  However, much to my dismay my Endometriosis symptoms returned within weeks of my surgery and I was struggling to work and maintain a social life because the symptoms were so bad.

Eventually, I was referred to the emergency gynaecology clinic at my local hospital, and that’s how I met my first Endometriosis specialist.  This time round I knew what I was facing and pushed for answers and he was keen to perform another surgery – one that was much more thorough. Even though he was Endometriosis specialist, looking back I realised that he didn’t quite take me seriously when I told him how bad my symptoms were – on the morning of my operation I told him I knew it was on my left ovary and he scoffed at me.  But I had been right – the Endometriosis had returned and spread and my left ovary was the worse. He was very concerned at how fast my Endometriosis was growing.

I was placed into the medical menopause for a while to halt the growth and shrink any bits that he had missed.  He admitted there was a particular troublesome spot on my bowel he couldn’t get to.  The menopause made me pain-free 99% of the time, and I was able to get back to a normal life, but it came with side effects and I didn’t want to be experiencing them on my wedding day, so I came out of it.  By doing this it was obvious that my symptoms would return, but I didn’t expect it to be as bad as it was.  My periods were horrendous – I was flooding, bleeding so heavy I was changing pads every 45 minutes and the pain had be doubled over on the floor.

I was still told that this was “normal” and just because “my body was getting used to having hormones again”, but I knew something was wrong.  Thankfully, my GP believed me and because I was having to take stronger and stronger pain relief, missing work and not being able to have a social life again, referred to me a top specialist Endometriosis Centre.  I didn’t go back to my previous specialist because he’d gone abroad, and whilst I had spoken to his replacement over the phone, I was less than impressed with her attitude about me coming out of the menopause and telling me pain was “no way related to Endometriosis – it must be irritable bowel syndrome”.

Because of the long waiting lists to see the lead specialist at the centre, we paid privately to be seen. I was impressed with how seriously I was taken and he couldn’t believe some of things that I had been told or treated in the past.  He listed me for another surgery that would be a bigger and longer one, involving his specialist Endometriosis urology and bowel surgeons.

When I came round from my 3rd operation (which was only 4 months ago), I felt a mixture of relief and despair – my Endometriosis hadn’t grown back as much as they’d thought but they’d found other things.  They discovered old Endometriosis growths, lots of scar tissue and pelvic nerve damage, but also Adenomyosis.  The Endometriosis had penetrated my womb.  I was told that I had two options – a hysterectomy or get pregnant ASAP.  I could consider going back into the menopause, but due to other reasons that’s not appropriate right now.

Currently, I am spending every waking hour in pain, taking stronger and stronger pain relief.  I am struggling to work and my social life is non-existent.  I am lucky to be in the care of a wonderful Endometriosis specialist who is deciding what to do next, especially since I’ve developed Endometriomas and other cysts that rupture at will, leaving me in agony, unable to move and off work.  It’s hard to know that there are pretty much no options left, and it’s heartbreaking to consider anything about my fertility – the location of where my Endometriosis has grown and deepened tells its own tale.

Since being diagnosed with Endometriosis, I’ve been diagnosed with other conditions too – some of which are sometimes linked to Endometriosis.  I’ve also learnt I have other problems with my cycle. It’s a complete rollercoaster, one that is never-ending, and it’s made even more difficult by the fact Endometriosis and Adenomyosis is invisible – you could take one look at me and not realise I have anything wrong at all or see what I go through on a daily basis.  That’s why its important to raise awareness and let people see behind the smile or social media posts – you never know what someone is going through.

I am what someone with an invisible illness looks like.

3 thoughts on “My Endometriosis Story

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