Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (7)
Updated: Mar 16, 2022
Until death do us part
It’s a rainy night in December and a friend and I have booked tickets at the Royal Shakespeare Company in Stratford. I force myself to go out. I have my period, but I am so fed up with avoiding life and I love Shakespeare, so I dose up on paracetamol and ibuprofen and am determined to make it through the night, even though I already expect that “actually enjoying myself” would be asking too much, given the pain I’m in.
I fidget on my seat during the play. However much weight transferring I do, my bottom half is screaming to lie down in an Epsom salt bath or with a hot water bottle. I have reached a pain level during my periods now where no amount of conventional painkillers makes any difference. I take them anyway, but they only take the edge of a tiny bit. I feel like I want to pass out and cannot wait for the interval. Luckily my friend and I had gone in separate cars, so he stays, while I drive myself home.
The pain is overwhelming. I decide not to risk the motorway, as exits often get blocked off at night for repair works and I don’t want to get stuck. Every fiber of my being just wants to be home.
The country lane I am on is pitch dark and the rain hammers down on my windscreen. My driving is totally automated behaviour, my body knows what to do. I feel like I am elsewhere. It takes all my remaining strength to keep my eyes and concentration on the road. A wave of pain hits me and while I momentarily catch my breath, my focus is miles away from the road. I go into the bend ahead of me way too quickly. I can feel myself losing control. The road is wet and slippery from the rain.
A massive tree is coming towards me. I can see it get closer in my head lights. In fact, it is as if everything happens in slow motion, as if time has been suspended. The tree seems to be taking shape from the darkness around me, illuminated, and it seems it appeared out of nowhere. Time seems to stand still while a voice in my head says: “Just let go. If you let go now, it’ll all be over.” The thought of it all being over fills me with an incredible sense of joy and peace. It is almost as if this cosy, warm, still, painless idea of not having to live this life anymore is calling me with the sweetest of songs.
Suddenly my son's face appears in front of my eyes. Is it just his face or does he actually call out "Mummy!"? I yank the steering wheel around, swerving onto the other side of the road that is luckily steeped in utter darkness. I am so lucky, that no other vehicles have ventured out on this wet and dark autumn night. My car comes to a stop. I'm slumped over the steering wheel in utter shock. All I can hear is my own breathing. The time warp I had been in turns into normal reality again. I shake and steer my car back onto the road. It feels surreal. The whole thing could have only taken a split second, yet it felt like ages.
Relief. Fear. Regret. Joy. Joshua. Fuck!
What just happened?
“Ok God, whatever you are and wherever you are: I know I had these “I don’t want to live anymore” thoughts, but I didn’t mean it! Fuck! That was close. What scared me more than anything else was the utter joy and elation I felt for that split second when I thought “This is it, it’s all over”. I have always been a glass half full type of person, I am an optimist, always seeing the positive in everything. Did I seriously just consider killing myself?
That night is a turning point. There is a very clear voice in my head saying: Enough! You have got to do something about this. You cannot carry on like this. Stop running away from the reality that endometriosis is winning and you are loosing. Stop pretending you can just carry on with life as if everything is fine. It's not fine. Nothing is fine! Tears well up. How did I get here? Why me?
I realize that this thought of killing myself is not something that has suddenly sprung up on me out of nowhere. It is actually a thought I have been toying with for weeks now. In fact, it has become so normal that I hadn't even noticed what dangerous territory I had maneuvered myself into. I have since spoken to other people who had suicidal episodes and what I have experienced over the past few weeks seems to be common. I have literally spent pretty much every day thinking about how I could kill myself as if I was thinking about how I could join a gym. Looking at it now, it's quite incredible how in a totally normal and rational way I had looked at all sorts of different options open to me.
About 5 miles from my house, there is a little village train station that some fast Virgin trains don't stop at, but travel through at quite some speed. Throwing myself in front of one of those trains should do it. I had even considered the trauma of the train driver and had in my mind written a letter to him/her asking for his/her forgiveness and assuring them that they should not blame themselves in any way.
I had over several weeks collected boxes of painkillers in my cupboard. Supermarkets only sell two at a time. They were stacked up and I kept wondering if I had enough. The last thing I would want was for it not to work and for me to have to have my stomach pumped.
My mother-in-law had given me two bottles of morphine to take back to the pharmacy, as she hadn't needed them after an operation, together with two boxes of very strong Cocodamol painkillers she had been prescribed. I had, of course, kept them all. They had joined my stash of paracetamol and ibuprofen. Today, I cannot even believe I did all this. But back then, it seemed the most normal thing in the world. I had in my mind written letters to my son, so he would have something to remember his mum by.
That moment in the car was like a wake-up call. It was like God was testing, how serious I was about this. As if God was showing me how beautiful death would be for my soul and giving me the option to carry on my journey on Earth or to go back home. I had chosen my son and with him, life. But I also knew one hundred percent, that if I chose life, I wanted to live and not just exist. I wanted so much more than what I had been living over the past almost nine years of slow decline into suffering and pain.
At this point I start having very regular conversations with myself and realize there seem to be two of me. There are two voices in my head: the victimized endo sufferer who sees no way out and the voice of resilience and hope. The endo voice is definitely the louder of the two. The voice of resilience and hope is nothing more than a little shy whisper. But it has a willpower in it that I can already feel is much stronger than the voice.
“Right. Enough is enough! You have got to stop this. There has got to be a way of fighting this illness. I DO NOT WANT TO DIE! I AM NOT READY TO DEPART THIS EARTH! UNDERSTOOD?!”
“Very funny. It’s not like I haven’t tried. I read books, I read medical studies and articles. I changed my diet. I saw homeopaths, iridologists, acupuncturists, nutritionists. Maybe it’s time to admit defeat. Maybe I should have a hysterectomy. I mean, lots of other women seem to be fine after it. What if it did solve the problem? What if I didn’t need HRT afterwards or would be absolutely fine on it. I’m not my mum. There is no proof I’d have the same problems she had when she went on HRT. Maybe it’s time I stopped being so stubborn and finally saw sense.”
“I’m not sure. It just doesn’t’ feel right.”
“What do you mean, it doesn’t feel right? What kind of argument is that? Dr. Myer said, she’d see me on her operating table sooner or later anyway. She said whatever I did, it wouldn’t work long-term; it would just mask the truth, namely that the endometriosis is spreading silently inside me while I might feel I’m getting better. Well, I am in bloody pain almost every day now. So stop pretending! Endo is eating me up from the inside. Face the bloody truth: Dr. Myer was right. She was right all along and I’ve been a bloody fool!”
“What if you haven’t looked everywhere yet? What if there is something you’ve overlooked. Don’t make any rash decisions. You can’t think straight you’re in that much pain. Please just give yourself a little more time. Go back on the internet. If you have a hysterectomy that’s it. They can’t put your womb back in once they’ve taken it out. Please just have one more look. If nothing comes up, fine. Then we’ll have the hysterectomy. And if they’ve got to take part of the bowel out and even if you end up with a colostomy bag, it’ll be ok. At least thanks to dad, you know what to expect, so there won’t be any surprises. Just one more google search. Agreed?”
“Ok. One more search. That’s it though!”
The google search brings up an Indian endometriosis specialist in Huddersfield, whose name I can’t pronounce, but who is a glimmer of hope. He seems to do an operation called peritoneal excision. I’ve never heard of it, but according to his website he has incredible results treating endometriosis and I would be able to keep all my organs.
“Well, if you think he can help you, go and see him,” my husband says.
I do love him for being so “matter of fact” and pragmatic. I am thinking about the £350 consultation fee and all the money I’ve already spent on alternative methods that helped a bit, but didn’t cure me and that after my voice operations seem to have been a wasted investment. It’s a long way to Huddersfield. Do I really want to go there? What if this so called endo specialist is a fraud? Surely if there was an operation that proved to have better results, my gynecologists' would have known about it and would have mentioned it!
Despite my head going into a spiral of doubt, my gut is super excited, proper butterfly excited. I ring up to make an appointment and book my train ticket to Huddersfield. The appointment is a month away. It feels like a glimmer of hope. One I'm almost too scared to look at for fear of yet another disappointment.