Endometriosis, straitjackets and infertility

Leeches, straitjackets, bloodletting, caustic chemical douches, genital mutilation. Sounds like the ingredients of a sadistic torture chamber, right?

No, it’s just your trusty 19th Century treatment plan for endometriosis.

If that didn’t work, well you’d be deemed a witch or demonically possessed and killed.

Personally, I prefer a wheat pack, paracetamol, tramadol for extreme pain and some other drugs I am not going to attempt to spell.

Endo is basically the lining of your womb going on a little wander into your other organs and sometimes having this sneaky ability to start sticking organs together. My endo even turned my appendix into a little snail.

Some people think it’s gross to talk about but that needs to stop right now because women make babies and we kind of depend on wombs for the future of the human race.

And despite a lot of perception, endo really isn’t a new thing – it’s been observed for more than 4000 years.

The Egyptians starting writing about similar symptoms in 1855 BC and Hippocratic doctors treated chronic pelvic pain. Plato even defined “suffocation of the womb”, triggered when “the womb remains barren too long after puberty, is distressed and sorely disturbed”.[1]

Then came the Middle Ages and men in silly frocks decided it was demonic. Old Sigmund Freud didn’t help with the conversation either, putting endo symptoms into the “imagined psychological illness” pile, despite endo being discovered microscopically by Karl von Rokitansky when Freud was just 4.

My endo symptoms showed as stomach pain (because I have endo on my tummy organs more so than anywhere else) and a GP told me when I was 15 it was “women’s problems” and I had to accept and live with it (this was after being hospitalised and being so unwell I had a seizure).  I dealt with it over the years, being diagnosed with a raft of stomach-related “syndromes” and then I was hospitalised again two years ago. The doctors gave me a few potential diagnoses then retracted them: A bladder infection? No. Pelvic inflammatory disease? No, sorry, it’s not that – perhaps a cyst? Why, it might even be your conjoined twin called Elizabeth growing out of your stomach, darling!

It happened again a month later, but worse. To be frank, I have had my fair share of stitches and broken bones over the years and that type of pain doesn’t even come close. This is like my stomach is being prised open with a crow bar and grated with a small garden hand rake, followed with a light sprinkling of acetone – like something out of the Saw or The Hostel.

It f***king hurts.

This time in hospital I had a laparoscopy and they found endo all over the show particularly on my abdominal walls and bowel – and there were also plenty of “adhesions”, where organs start to bind together. Apparently, it’s the adhesions that cause the sharp nausea-inducing ripping or stabbing feeling.

After the operation, I rang my surgeon in a flap because I could feel all my organs moving around. He laughed and said it was normal – I just had been tightly bound up for so long.

I know. I know. I could do with a violin right now. A very small one. Play myself a little tune. And, there are people with significantly worse cases than mine having to endure a lot more pain than I did.

But here’s the thing – how many people are living with it and just don’t know because it’s relegated to the “women’s problems” pile. I mean it wasn’t that long ago it was considered to be all in our heads!

My advice would be to seriously keep pushing for answers. My mum was on my back to keep at the doctors to get an answer and finally we did. Which led to….

The Big F

Fertility.

Probably the silver lining from being diagnosed with endo was that my surgeon suggested an AMH test of my ovarian reserve. It’s a quick blood test and helpful predicter of how many eggs you could obtain in an IVF cycle (and your general fertility level, as far as I understand).

To my absolute shock and heartbreak, my AMH level was low. Really low. Too low to even consider egg freezing without looking at four to five (or more) treatments or more at $15,000 a pop. The eggs they would retrieve would be minimal and their quality could also potentially be very poor.

Honestly, I wish every young woman would go get this test.

I remember distinctly when my surgeon pointed out to me where I was sitting on the fertility chart and it was a blow I struggle to describe.

Over the past year I have had to come to terms with the fact I might not be able to have children of my own. I love kids – I get on with them more than most humans. They are so innocent, so inquisitive, so wholesome and so full of love. It’s not until you’re told you may not be able to have something that you want them even more.

I made a conscious effort to do everything I could to improve my fertility – and now, something which really is unheard of, my AMH level has gone up. It’s still in the “red zone” but teetering on normal.

It really is something you never really think about until, all of a sudden, you have to.

[1] All historical references come from Endometriosis: ancient disease, ancient treatments, Camran Nezhat, M.D.,a Farr Nezhat, M.D.,b,c and Ceana Nezhat, M.D.a,d

 

2 thoughts on “Endometriosis, straitjackets and infertility”

  1. Amazing read as always. Very insightful for me, I never really understood endo ….until now. The pain must have been excruciating. xxxx love you hun

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