Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (1)

A normal period night

Hello. Sorry you have to see me like this. I’ve got to be honest, nobody ever has. Not even my husband. Especially not my husband. My husband lost his first wife to cancer and the last thing I want for him is to have a second wife who is not well. He’s been through so much already, he doesn’t need to suffer any more.

So here I am. Oh sorry, I better tell you where I am as you can’t see me. I’m kneeling on the bathroom floor. It’s a wooden floor. The guy who put it in was really pleased when he found some reclaimed timber wood we could use as floor boards and we put an oak stain on it. It looks lovely and warm when the sun shines in through the window in the morning. Right now, however, it is a bloody cold wooden floor. It is 2.30am and it is winter. I have not switched the main bathroom light on, as it is an ensuite bathroom and I don’t want to wake Richard up, who is fast asleep in our warm cosy king size bed. There is a little light over the sink, which is illuminating a hunched figure kneeling in front of the toilet. That hunched figure is me.

I am in what my yoga teacher would call the child pose, kneeling with my upper body curled up over my thighs. Just that my arms are neither resting on my side nor stretched out in front of me. They are currently reaching up towards my head, where my hands are pulling some of my hair out. Not in the metaphor sense of “Oh, I was pulling my hair out!” but actually pulling some hair out. Oh, the pain. It feels so good. I cannot tell you how good it feels to feel pain somewhere other than in my groin, my lower belly, my upper thighs, my lower back and the whole area around my mid riff that I would call my endometriosis area (or endo area for short). Pulling my hair out is one of the ways I try to divert the pain just for a second. Sometimes I bite my arm or my finger. The distraction never lasts very long, but oh, it’s such a relief, even if it’s just for a second.

Sometimes I just kneel there, rocking back and forth, waiting for the wave of pain that grips me to wash over me. Other times I scream, mouth open, as loud as I can inside my head. Obviously not actually, I wouldn’t want to wake my husband. Sometimes I cry, tears silently running down my cheeks. Other times I sob, chest heaving up and down with pure desperation, my hands in front of my mouth trying to muffle the noise that every now and again escapes despite my attempts at doing this silently. Sometimes I swear like you’ve never heard anyone swear (in my head, of course). Other times I just feel totally empty, staring into nothingness, wishing I wasn’t here anymore.

Eventually, I will be so cold and numb, I crawl back into bed. Shivering, exhausted. If I’m lucky I fall asleep for just another hour before it’s time to get up and face the day.

Hello day!

Main aim: holding it together. "Don’t let anyone see how you really feel. You can do this, you’ve done it so many times before. Smile. Let’s go!"

Empty the dishwasher. Porridge for hubby, scrambled eggs for my son, quick cuddle for the dog, refill water bottle, washing machine on, quick, put your shoes on, time to go. “Have a lovely day!” Kiss hubby goodbye. School drop off. Walk the dog. Feed the dog. Put washing in the dryer. Tidy. Hoover. Prepare lesson. Can I cancel today’s lesson? I’m really not feeling well. Take paracetamol. Drive to client. Teach business German. Drive home. School pick up. God, I’m exhausted. Cook dinner. Bath. Hot water bottle. Bed.

That’s a good period day.

A bad period day is spent on the sofa, writhing, not knowing how to position any part of my body so the pain becomes bearable, and wishing with my whole heart I would just pass out. You see people pass out with pain, don’t you? All the time. I remember a friend passing out regularly when we were kids lined up during East German school assemblies, outside, standing in the school yard. I did sometimes wonder if she was able to faint by choice, as it got her out of the boredom of standing there. Movies? In movies I’ve definitely seen people pass out when the pain gets too much. Why don’t I pass out?

I really could not imagine being able to bear any more pain, surely this is what childbirth must be like. I had Josh by caesarean, so I wouldn’t know. And sorry to any mothers who did go through labour and probably think “Fucking twat! She clearly has no idea!” I don’t, you’re right. I’m just in such pain it helps to think it might be as bad as labour pain, it makes it feel a little heroic and therefore a tiny bit more bearable and it takes a little bit of the guilt away that many mothers feel who didn’t have their children naturally. You always feel like “not quite a proper mother”, which of course, is utter rubbish.

In fact I still remember the joy I secretly felt, when I was told my placenta was basically blocking my child’s exit route, a condition called placenta praevia, which meant I couldn’t have a natural birth. While the nurse, who clearly felt pushing a melon through your vagina was the preferable choice of bringing a new soul into the world tried to tell me - her voice full of hope and empathy - that my placenta might still move in the third trimester of my pregnancy, I secretly prayed to god to just leave it where it was, so I could have a caesarean.

A c-section sounded like absolute bliss to me and took a little of the sheer panic out of my thoughts that were kind of going like this: “What were you thinking?! It’s all very well putting that thing in there. I admit that was quite good fun. But shit! It has to come out! Why didn’t I think this through! It has to come out!!!!!!!!! Please God let me have a caesarean. Please, please, please. I’ll do anything. Just let me have a caesarean!” I afterwards did wonder, if that’s where I jinxed it. Was that the moment it was decided that if I was spared the pain of natural labour, I would have to endure years of monthly period pain instead? I’ll never know.

If you search online for descriptions of endometriosis pain you get phrases like “hundreds of knives slashing your insides”, “your insides being ripped apart”, “electrical shocks ripping through you”. I once saw a picture of an artist suffering from endo who had painted a wreath of thorns round her belly, oozing with blood and red inflammation and I felt that captured exactly how I felt every month. At best, it’s a dull ache in your abdomen, legs and buttocks that is always there, a constant companion lurking in the background of your self-awareness.

Oh, and let’s not forget the pain when you need a wee. Not everyone has this, but I did. It’s like you desperately need to go, but nothing comes out and however hard you try to squeeze, there seems to be no communicative connection between your brain and your bladder or whatever muscles are responsible for opening your bladder. Sometimes I stick my finger into my vagina trying to massage what I figure must be the exit route through which that urine pipe must run, resulting in a little oh so welcome trickle running down my hand. A tiny bit of relief at last. Even though it doesn’t last long, it is pure bliss. But I know my bladder is still full. Sometimes I strip off and jump in the shower, as the running water and standing upright helps to release the blocked flow. I remember the boys once on a skiing trip discussing who did or didn’t wee in the shower, their opinions ranging from “doesn’t everyone” to “how disgusting”. I kept very quietly out of that conversation!

If we’re talking bodily functions and exit routes we might as well talk number twos. Another nightmare. I basically spent my life being constipated. This was a dream for my mum, who used to proudly tell me that even as a baby I never produced a dirty nappy. Instead I would poop cute little rabbit pellets onto a piece of tissue paper neatly positioned under my cute little bum while she changed my nappy. What a dream child! Much better than my naughty brother who would fill the whole nappy full of shit that ended up running up his whole backside, oozing out of the sides. Not like clean, perfect, constipated, little me. No, no, no! So growing up, being constipated was my normal. In fact, with my mum lovingly telling that story, I was almost proud of never having had a proper shit.

Being constipated and endo do not go well together. I am in agony. It feels like I can’t push anything out, like the muscles responsible for moving your stool down and out have stopped functioning. The pain is horrendous. It is as if on top of the normal period pain you have the worst tummy ache you can imagine. You know that just having a good old shit would solve at least part of your problems, but the exit gate remains shut and whoever has got the key has gone. It actually feels like it’s all piling up behind the gate, but the anus muscles are totally unresponsive.

I put Vaseline on my finger and reach inside my bum hole. I manage to scrape out some little pellets of poo, but not enough to truly cause relief. (Sorry about this folks, but I figured, if I write this, I might as well be as true and authentic as I can be).

I remember talking to my gynaecologist about the constipation and she told me to get glycerine tablets and just take laxatives regularly. I can’t see how that can be a healthy long-term solution. Although I do get some herbal laxatives. They don’t do much though.

I realize that the constipation and pain are worse on the first two days of my period, so decide just not to eat much on those two days. I never feel like eating anything anyway when the pain is really bad, and I am sure my body can survive a couple of days of fasting. I eat a little watery porridge or flaxseeds soaked in water. This usually helps smoothen the bowel passage.

Looking back at this from today's perspective, I cannot believe I actually thought this was the most normal way of having a period. How did I just accept this as my life for years? How did I not question my doctors more?

Follow my journey from this to fully healing from endometriosis, completely naturally. Log in and read my Blog every day this month. March is Endometriosis Awareness Month. Sharing our stories, sharing what did or didn't work on our healing journeys, supporting each other is what sisterhood means. So enjoy reading my story. Maybe it'll inspire you to look outside the box for solutions to heal yourself.