Monday, 4 July 2022

My Battle with Endometriosis


Endometriosis showed up in my 20s, although I did not know that then. I had bad menstrual pain, heavy bleeding and hormone imbalance. All which were ignored by my male doctor and male gynaecologists. My doctor (later admitted) thought I was a hypochondriac. The first gynae was just horrible. He seemed to hate me from the moment I entered the room, so my mind boggles at what my doctor had written to him about me!

Because my endo wasn't picked up on, the endometrial tissue kept spreading throughout my abdomen, affecting all my lower abdomen organs and muscles. When I started losing wight, I thought I'd found a diet that worked and bought a new wardrobe. Even though I had severe pain with constipation, I thought that was also due to my dieting. I never realised it was because the endometrial tissue had formed a band of shrinking scar tissue around my intestines that could very easily have led to a rupture and/or gangrene.

Then one night, I woke up to HUGE pain, but Stoic me waited till morning to phone the doctor (ambulances are expensive in SA as well as USA). My doctor admitted afterwards (he did apologise!) that he didn't think my pain was genuine, but thankfully he sent me for a scan anyway. They found an ovarian cyst the size of a grapefruit had torn my ovary apart. I was bleeding internally. I had surgery the next day, but they messed up. Not realising how damaged I was internally, this new gynaecologist caused more damage and had to call in the help of a second surgeon. I was under for several hours as they worked to save me. (SIDE NOTE: it was this emergency surgery that triggered my fibromyalgia)

You see, endometrial tissue is like living glue - it fuses to whatever it touches and every month, it bleeds. And when it bleeds… it fuses to more places. By that stage, my womb was fused to my bladder and my intestines and kidneys were fused to my back muscles, causing the constant back pain that had been an ongoing problem since my 20s. They had to remove one ovary. I should have been offered a hysterectomy - I wasn't. I should have had the long term details explained to me - they weren't. In fact, when I asked gynae #2 to explain what endometriosis was, he snapped, "I told you this already!" 

I pointed out that he has explained straight after surgery, when I was still groggy and drugged up. I made him explain again, which he did briefly and with great annoyance. I had to go away and find the information for myself, which was a slow and difficult journey since good information on this disease was still very limited back in the 1990s.

By the time I married, I was told I probably could not have kids, but once again I was not offered any help or suggestions. No pain care, no medications, nothing.

In Scotland, I miscarried twice. First time, was within a week or so, but I still knew I'd been pregnant. Second time, was longer and more unpleasant as a result. No one explained to me that I'd probably never have managed to carry a baby full term, or without danger, pain and complications, since by that stage my womb had been fused to itself  (gynae #3 said "folded over and glued to itself like an envelope") as well as fused to my bladder and lower intestines.

A year after my last miscarriage, the pain started to be intense. I couldn't lie down without pain. Yes, I told doctors. Nothing was done about it. I went home and basically stopped sleeping for about a month. Then one morning, the pain went up to epic level and my mom took me to the doctor where a FEMALE doctor booked me into emergency straight away.

This time, the remaining ovary had ruptured - bloated with cysts and fused to other organs. This time I was offered help - medications and the option of a hysterectomy, but with the warning that a hysterectomy would be dangerous and possibly life-threatening. Since all my lower abdomen organs were fused to each other, they could not remove my womb entirely. They'd have to cut off bits, leaving the pieces fused to other organs behind. That would mean each little portion would bleed when I menstruated, and probably cause more issues rather than solving them. On top of that, cutting it away when fused to everything else meant there was a pretty good chance that they could damage other organs or rupture my intestines.

I refused the surgery and took medications instead. The meds caused early menopause, with all the symptoms and annoyances of that. As an extra, the meds also made me put on a lot of weight. And finally... I had rare side-effects - extreme water retention and peripheral nerve damage: numbness, loss of balance, loss of ability to hold or use fiddly items like pens, paint brushes, etc for long (my hands cramp up). The cramping is mostly in my fingers, feet and toes, but sometimes I get weird painful muscle cramping in my legs, sides and shoulders. The nerve issue has led to other types of foot damage

Sleeping is still painful. Some nights are ok, some are bad. It's never comfortable. I have low grade pain constantly. It's mild, thankfully. Sleeping, standing and walking are the worst causes of pain. So I have to limit how much I stand and walk, which obviously hasn't helped me tackle the weight gain!

And it is VERY tiring. I get exhausted quickly. I can go from okay to a very not okay in minutes.

2 comments:

  1. Reading this makes me angry...I've heard women saying this, that male doctors have told them the pain was all in their head.

    If one thing social media is good for is this...women can now document and share their experiences to help other women. And to let the whole world know about these wretches who are supposed to help people heal.

    I'm so sorry you've had to go through such pain. I hope you feel better.

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  2. Yeah, the internet is actually a wonderful thing - and has led me to some great friends. (looks at Neena :D ).

    I'm fairly ok now. I miss walking without pain. I used to stride out walking. I miss that, but otherwise I'm ok. :)

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