Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (2)

Updated: Mar 16

The diagnosis


21 January 2011. I’m drifting in and out of that lovely cotton wool cloud that exists between a general anesthetic and the real world. Opening my eyes seems such an effort, whereas letting myself fall back into that white oblivion is absolute bliss. Something is pulling me back though. Someone is calling my name.


I open my eyes and smile. The smile is automatic. I don’t really feel like smiling at all, but I’m a terribly nice person, so I smile even though I don’t feel like smiling. What I’m smiling at is my surgeons face. She is sitting on a chair at the foot of my bed and I think she wants to go home. She also smiles a smile she doesn’t want to smile by the looks of it. She is talking to me. I see her lips move, but I can’t hear a thing. I reach back into the white cloud to grab my conscious mind and force myself back into the body that is lying on the hospital bed. My body. The body that has just had a laparoscopy. What’s a laparoscopy you ask? (Well, at least I did, when I was told I should have one.) It’s when a doctor makes a tiny incision in your belly button and puts a camera through it to look inside your tummy. But I should really start listening to my doctor here. “… much worse than we thought. I haven’t been able to do anything. Everything in there was too red and angry to laser. We need to get the inflammation down first. I’ll arrange for you to come and see me in 2 weeks to discuss your options.”


Much worse than we thought. Much worse than we thought. Much worse than we thought. Haven’t been able to do anything. Haven’t been able to do anything. Not done anything. Much worse. Much worse.


Oh God! I can feel the tears welling up. My throat feels tight and while inside my world is falling apart I can still feel that stupid smile on my face. My outside façade probably looks like ‘I’m absolutely fine, marvelous, in fact’, while my inside is panting with panic thinking ‘Am I dying? Have I got cancer? No I’m pretty sure she didn’t say cancer. Oh God! Why did I not listen? What have I got?’ I want to rewind or ask her to go back to the beginning of her explanation, but I can’t speak. It’s like a ball of fear is blocking my throat.


“Are you ok?”

“Fine,” I croak.

“Don’t worry. Recover and I’ll see you in 2 weeks. You’ll be fine.” And off she goes.


So here I am, 34 years old, laparoscopy, and all I will now know for 2 weeks is that whatever I have got it much worse than we thought. Bloody hell. Stupid anesthetic. Why didn’t I listen!? I’m so exhausted.


A few hours later my husband comes to pick me up. That’s the good thing about private healthcare. They want the bed, so you’re out quickly. He wants to know what the surgeon said and the tears well up again, but I push them back down before he can notice. My husband lost is first wife to breast cancer, I really don’t want him to have to go through this whole “ill wife thing” again. I put on my brave face: Not to worry, they haven’t been able to do anything as everything was really inflamed. But I’ll see the consultant in two weeks to discuss my options and in the meantime we’ll have to wait for her letter, as I have no idea what she said I had, but it wasn’t cancer. Big smile… a long out-breath. I’m pretending I’m not worried one little bit. Whatever we get diagnosed with these days seems to be ok as long as it’s not cancer. Cancer kills. Everything else is fine. You live.


The letter from my consultant arrives a week later. It’s the one they sent to your GP and you get copied in, so it’s full of medical terms I’ve never heard of. Apparently I have stage IV endometriosis on my uterus, ovaries and colon and extensive endometriosis in the pouch of Douglas. I quite like that I have a pouch of Douglas, it sounds interesting and adventurous, a rough Scottish wilderness hiding inside me. I also have ovarian endometriomas, a retroflexed uterus and fibrosis. I have to google most of these words and make a mental note of starting my own dictionary of medical terms. I feel a bit lost reading about my health in what feel like a foreign language. It is actually a foreign language in a foreign language, as I am German and the normal English is already a foreign language, albeit one I have learned to speak quite well. So I'll just have to learn medical English now.


Google teaches me that endometriosis is a chronic illness where cells that are normally found in the womb for some unknown reason appear outside of the womb and inside the tummy. I imagine a layer of cling film like cells that attach themselves where they shouldn’t be.


What’s the big deal? The big deal comes once a month when my body releases little messenger hormones that tell the cells which form the lining of my womb that no fertilized egg has been implanted and that their services – to form a cozy nest of blood supply for a baby – are not required this month and my period starts. Those little messenger hormones are programmed to speak to all the cells that form the endometrium. Just as if they were inside the womb, the cells that have escaped my womb and cling to my ovaries and my colon get the message and dutifully start to bleed. The trouble is, there is no outlet. No cervix, no vagina. No exit route. I effectively bleed internally and the blood has nowhere to go. The bleeding cells are stuck to my organs, which naturally don’t like having something stuck to them. So they start reacting with inflammation to tell the immune cells to come and sort out whatever is going on.


The immune cells are ace. Like policemen on duty they arrive and sort things out. The trouble is, that this happens every month and those police guys have lots of other jobs to do as well. After months and months of this, they’re overworked and it takes them longer and longer to sort out the inflammation. My body is trying to make me aware of the inflammation and sends signals to my brain, the message I receive is encoded as pain. The more fed up my organs get, the more pain I feel. Basically everyone - me, my organs, my body, my immune cells - is tired, exhausted and fed up, ready for a holiday.


When I finally see my consultant gynecologists' again, she explains that before anything can be done to deal with the extensive endometriosis, we need to urgently get the inflammation down. She has a way of giving us all the holiday we so yearn for and it’s called GNRH injections (Prostap). For six months, we can stop those little messenger hormones from telling my cells to bleed by injecting male hormones that shut down my ovaries and my whole reproductive system. A bit like putting me into premature menopause at 34. Turn me into a man. Fabulous, I’m hoping I won’t have to hoover and cook anymore either.


Six whole months without periods - I feel like I’ve won the lottery. I am less ecstatic when my gynecologists' explains my options after the six months: a full or partial hysterectomy (which means taking the womb and possibly ovaries out) and a less likely but possible bowel resection (removing part of my bowel). I decide to just push these thoughts aside for the moment. Let’s take this bridge when we come to it. For now, I am going to make the most of my six months holiday. No periods, yippie!



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