Mother of all Lists — Endometriosis: Wouldn't Wish it on My Worst Enemy

Endometriosis: Wouldn't Wish it on My Worst Enemy

I have to admit for quite some time I assumed that most people experienced periods as I have; sure, PMT might have gotten worse with age, but other than some irrational anger, a fierce appetite and a bit of bloating, monthly bleed is nothing more than an inconvenience.
But for some, including those who suffer from Endometriosis, menstruation can be nothing short hellish. Here Emma aka @mummyspaininthearse tells us why she wouldn’t wish the condition on her worst enemy:
I’ll never forget my first period. It goes without saying for any woman, it’s a pretty momentous occasion, but pretty it ain’t. I vividly remember waking up in what only can be described as a pool full of blood, shaking, in the most indescribable pain.
I was 10 years old.
My Mum took me into the shower to try and calm me down and clean up all of the blood.
Every period would usually last for around 14 days straight. I’d come back on 14 days later with the same agonising pain and heaviness. My GP would send me away telling me that some periods are just like that and no period is ever normal.
This is far from normal.
I would be in a heap on the bathroom floor, sobbing with the pain, even when I wasn’t on a period. I felt as if my stomach was trying to rip itself apart like there was a hot burning iron trying to scold my insides.
When I was 13 I was diagnosed with Von Willerbrands, a blood clotting disorder. This made my case even worse as my GP was even more resistant to referring me to a gynaecologist as he put the heaviness all down to this….
But what about the mind-numbing pain?
Finally, after 6 years of countless appointments and tears, my GP referred me to a Gynaecologist to have an ultrasound. I was so relieved that finally, someone was taking me seriously.
The scan came back normal.
But…. How….
I remember breaking down on the way home as everything inside of me, everything felt far from normal.
I began different treatments. Different types of the pill, the Mirena coil for a year (which for me personally was hell as it felt as if I was having constant contractions as it was a foreign body just trying to get out of me), pain relief (Oramorph being the strongest) and then, in the end, something called Prostap. A monthly injection that makes your body believe it’s going through false menopause.
I was 19 years old.
I hated it. I hated what it stood for. I hated what it was doing to my body. I hated how it was turning me into this old woman. I was paranoid that everyone who saw me would just ‘know’. It completely messed with my emotions, but it helped with my pain, so I had to stay on it as the physical pain was just getting too much. There were times I would find myself sitting on the bedroom floor crying, not even knowing why. The only problem is, you can only stay on Prostap for 6 months at a time as it can cause Osteoporosis, so after 6 months I’d have to come off of it.
And that’s when the mind-numbing pain would hit you all over again.
It’s when I went back to my gynaecologist one day that he started talking to me about something he believed I may have, seeing as the Prostap works so well, something called Endometriosis.
What the feck is that? I’m sorry; the lining of the womb grows out of itself and does what now? Attaches itself to different organs? Are you shitting me?
Before I knew it, I was booked in for keyhole surgery to investigate. The thing is with Endometriosis, is the only way it can be diagnosed is through laparoscopic surgery, hence why it takes on average 7-8 years for a woman to be diagnosed. Even though 1 in 10 women suffer one form or another with this chronic illness.
When my surgery date came up, I was a complete mixture of emotions. Of course, I was nervous, but part of me was relieved that I was finally 10 years after starting my periods getting the answers that I so desperately needed.
Speaking to the surgeon afterwards I felt numb. There was nothing. They found nothing.
What…
They believed it was something called Adenomyosis (Endometriosis that stays in the lining of the womb) and due to this they wanted to send me to another surgeon in another hospital who was more specialised.
I felt so numb.
Why didn’t they just find ‘something’ so they could burn the fecker away and I could get on with my life?
I’m not sure if this is perfect timing or not so great timing either, but I’ve also just met a guy… wow, so he’s definitely the one. How do I know this? I stayed the night as his parents’ house in his ‘white’ football kit and woke up to blood everywhere….
…even on him….
I wasn’t even due on…
FML

So I’ve met the new surgeon. I like him. He seems to want to open me up again pretty sharpish. Bloody hell (excuse the pun). I only had my last op 12 months ago. As when I’m not on the ‘make me a crazy ass bitch’ injections, the pain is just like something out of the alien.
Oh wow… I certainly wasn’t in this much pain the last time I woke up from surgery. Seriously, what the hell has he done to me!?
I’m sorry, can you repeat that please? I had Endometriosis where? I feel like I’m going to faint. Or at least be sick. Dan’s face. He looks scared, but he’s doing that ‘everything fine’ face.
Everything is not fine.
How can it be on my ovaries, womb, rectum, back, hip, bowel, bladder… how? Just how?
Everything from then on became a continuous whirlwind. Prostap injections into the stomach/hip. Laparoscopic surgery to burn away more Endometriosis which seemed to be growing more and more aggressive every time they opened me up which resulted in the surgery being longer and the recovery taking more of a toll on my body each time. And repeat.
Once me and Dan were married, I stopped the Prostap injections straight away as we knew we wanted to start a family imminently. To say it was utter agony, physically and emotionally is an understatement. I had nothing stopping the Endo growing. Every month I would come on a period with a Tsunami of blood, reminding me that I still wasn’t pregnant. The pain was constant, causing me to physically shake. Making love was excruciating.
It was utterly devastating for both of us.
In the meantime I had more surgery. More thick, life changing Endometriosis was taken away.
3 months after surgery, on Valentine’s Day, I found out we were expecting Annabelle.
It was without a doubt the toughest pregnancy due to the severity of my migraines, constant sickness (which made me tear my oesophagus and throw up blood), pain of adhesions stretching from previous surgeries and SPD from 4 months, but it was without a shadow of a doubt the best, the most beautiful time of my life and I will always cherish it.
During pregnancy, Endo is believed to stop grow due to hormones not feeding it, a bit like the Prostap injections. Within 2 weeks of having Belle, my symptoms came back with a bang.
I just knew…
So began the Prostap injections and more surgery with a new-born.
Worryingly, even whilst on the Prostap injections the pain started to intensify and I started to bleed at any given time. Dark, thick blood (Which I later found out to be something called ‘chocolate cysts’).My Endometriosis was getting stronger.
It was winning the fight….
After 6 laparoscopies me, Dan and my surgeon agreed that enough was enough. Endometriosis had won. The only thing left was a hysterectomy. Something I had been fighting against all of these years.
I was 30 years old.
I left the surgeons room and sat in the café with my Mum and just cried and cried. I didn’t care who saw me. My heart had broken into two.
No more children.
Ever.
I will never be able to give Dan another child. I will never be able to give Belle a Brother or Sister…. She loves babies…. I’m a failure….

Endometriosis is not just a bad period. Endometriosis has taken my life, my husband’s life, my daughter’s life, my family’s life, my close friends’ life and crapped on it from a great height.

Nearly 6 hours of surgery and even then things didn’t go to plan. Endo had stuck all of my organs together. The bowel and uterus being the most rigid, so they could only remove my ovaries and fallopian tubes perforating my bowel in the meantime.
A week in the hospital with tubes coming out of your stomach, arms and ‘nunny’, trying to act as if everything is absolutely fine in front of your 2-year-old daughter is nothing short of heartbreaking.
A matter of a few months went by and I was brought back in for emergency surgery as even though I had both ovaries removed, every month I would still have a period that would last a week with constant pain that would leave me literally dripping in sweat, exhausted to the point of feeling as if I could keel over. I had lost 2 stone as something was showing on a scan to be suffocating my bowel and the heavy bleeding from the bowel was now every, single day.
I felt as if I was slowly dying.
Going down to surgery I could feel my heart racing. I had put on a unicorn dressing gown to try and see the light of the situation, but inside I knew something was terribly wrong. The thing with Endo, is you start really knowing your body and I knew something was really, terribly wrong.
Oh Dear God…
I can’t breathe. This pain is just insane. Why does it say 8.30 pm on the clock? It can’t be. I was out to sleep at 12.30 pm. Why are there so many people around me? ‘Emma, Love. There have been complications, but we’re all here for you. Do you need more pain relief?’ ‘Drugs, just give me drugs, please’. Oh, God. I sound like a drug addict. Right now, I don’t care. This pain, Jesus Christ. It’s so much worse than all of the other times. I can feel a bag!? Shit, have I got a stoma bag? Why is there blood pumping into me? Don’t bother; I don’t want to be here if the pain is going to be like this. Oh God, did I just think that? Belle. I need to see Belle. ‘Emma, Love? You’re doing really well. Can you hear me, Sweetheart?’
And so it was done.
A full hysterectomy. 7 and half hours of surgery with robots. More Endo removed from multiple organs (images I’ll never erase from my mind), damaged ureter which resulted in a 30cm stent to be left in for 8 weeks which was utter agony every time I moved an inch, every time I went for a wee I genuinely felt as if I was going to keel over from the pain, countless UTI’s and ended up in hospital on an IV drip of antibiotics for a kidney infection.
Once the stent was out, I desperately tried to look at this as a fresh start to see this as something ticked off my list of health problems (Fibromyalgia, Chronic Migraines, von willerbrands, curved spine, leaking heart valve), but something wasn’t right. I didn’t feel right.
The pain was still there.
Countless times I would go to my Doctor, Out of hours or A&E in agony asking if HRT could grow Endo as the pain was getting worse and worse. Doctors would explain to me that it was adhesion pain from previous surgery, that it was IBS (even gynaecologist had me fill in food diaries), that I need to go back to pain management and just ‘get on with it’. I eventually stopped the HRT without telling my GP as I firmly believed it was growing Endo and my migraines (which are hormone-related) were getting so bad I felt I was on the verge of having a stroke.
One day I was having an ultrasound due to my weight loss and enlarged spleen and the sonographer said she would kindly scan where I was having a lot of my pain lower down. She asked me when I last had my period….
But I’ve had a full hysterectomy…
She found an ovary with a large cyst on it. I felt numb. Sick. Angry. Devastated. Every emotion you could imagine. When I phoned up my surgeon’s secretary, I spoke to someone standing in for her who simply turned around and said three times ‘It’s nothing to do with us’. And ‘Stop getting so stressed’.
There are days I don’t know who I am anymore. I look in the mirror and all I see is a tired, haggard, ‘old’ woman. I’m exhausted. I feel so ill all of the time. I feel like this thing is slowly trying to kill me. Day by day.
When I finally meet up with my surgeon (eventually I had to go private as even though I was put through as urgent, the waiting time was 5 months. I couldn’t wait that long as in the meantime I ended up in the hospital for 5 days after keeling over twice in one day), to say he’s devastated, shocked and perplexed by everything is an understatement. The pathology reports 100% show that BOTH ovaries were removed, yet the scan clearly shows some form of a working ovary and my bloods show that not only am I going through menopause I am also producing Oestrogen. He calls me his Enigma and if there is a stomach that he wouldn’t want to operate on – it’d be mine.
Trust me, love. If there is a stomach that I wouldn’t want you to operate on either, it would be mine.
People keep telling me how I’m strong, when in fact all I feel is numb.
Then there are the days that I am strong. Stronger than you could ever imagine. I have been fighting Endometriosis for 22 years now and this son of a bitch will never beat me. I will never let it win.
I’ve been told my operation has been put as urgent, so here’s hoping it will be done as soon as possible without any damage and I will be able to move forward from this chapter finally. I will not give up on this fight.
I pray every, single day that my daughter and nieces never get this life-changing condition.
Endometriosis is not just a bad period. Endometriosis has taken my life, my husband’s life, my daughter’s life, my family’s life, my close friends’ life and crapped on it from a great height.
I would not wish it on my worst enemy.
If you suspect that you have Endometriosis, please demand to get it checked sooner rather than later.
I beg you.