Dec 6, 2022

Life in the Middle – Hysterectomy

Part 2 — Lost in Recovery

I had a partial hysterectomy in Dubai in 2017 and I flew home to Kenya to recover. A month later, I flew back to Dubai in tatters from insomnia and depression. I met with my OB/GYN/Surgeon and told her that I couldn’t sleep. I wasn’t even experiencing the sensation of being sleepy.

I needed help. I told my surgeon that I was severely sleep-deprived AND depressed. I wasn’t before the surgery. For reasons that I will never understand, except that perhaps she was quite possibly the most absurd physician in the history of medicine, she told me that, “…removing your uterus has no effect whatsoever on your sleep or mental health”. She said that with a serious expression.

Our exchange didn’t last much longer. I tried to explain to her that I was sleeping just fine before the surgery and, literally, a week after the surgery I couldn’t fall asleep. She would not hear me. She told me I sounded “hysterical” and then wrote a prescription for Xanax and a sleeping pill.

Med School’s finest hour.

I fired her. The exact words were, “You’re not listening. You didn’t discuss side effects from the surgery with me thoroughly and I’m telling you I can’t sleep and I’m sliding into a very dangerous depression. You’re fired.”

Yep. Fired. I pay you. You’re not delivering to expectations. Fired.

I went and collected copies of all of my records and then left the building never to return.

The next day, I visited with a new doctor — from Beirut- and she told me that all of my post-surgery conditions/side-effects were normal. Very normal. She also warned me that I could expect to have difficulties for at least 12 months. However, she didn’t expect the insomnia to last. She also gave me a prescription for Xanax and a sleeping pill. I didn’t ever fill either prescription.

I liked this new doctor. At least she acknowledged my symptoms were REAL. I wasn’t hysterical. I wasn’t crazy.

I didn’t fly home with solutions — but I didn’t feel so isolated.

The depression kept coming — in waves. Each wave was bigger than the last. I sought counseling in Nairobi from a trusted source and we started a weekly discussion around mourning my uterus. Mourning my infertility. And acknowledging all of my feelings about my childhood rape, not being married or having children and the final “punctuation mark” that the surgery put on my sexual self. ALL of that felt very real. And it was incredibly painful.

I thought I’d dealt with the childhood rape successfully with years of intensive, good therapy. I thought that I had accepted not being married after 40 (something I never really anticipated or wanted) AND not having any children.

But the feelings were all back.

The childhood rape memories and trauma came back so unexpectedly. I wrote 20,000 words in 3 days about it. Apparently, the trauma was still very real despite all of the “work” I’d done over the years. My “sex” had been traumatized during the surgery and so it all flooded back.

The absence of a husband — something that had started to bother me when I turned 40 and really started to make me sad after 45 was “fresh enough” that it just hurt. Was I still a woman? Can a woman be a woman without a uterus? Would a lover be able to tell? The questions might sound silly. I felt “castrated” and I didn’t have a guide book to manage my emotions.

I couldn’t have children. I spent 3 years trying to conceive and that journey ended with a medical discovery — the rape had caused permanent damage and I could not conceive. To add insult to injury, my ovarian count was non-existent. Not only could I not conceive, but I was, in fact, peri-menopausal. I went from “trying” to “hormone replacement therapy”. I’m not sure I can accurately describe what it felt like to be told that I couldn’t have a child. Unless you’ve gone through the infertility journey, it’s impossible to describe.

I spent the next two years trying to absorb, understand, and accept the truth. It wasn’t easy. It was incredibly lonely. It doesn’t help to hear, “…you can always adopt…” I know people meant well — but it wasn’t helpful. It also didn’t help to be asked, by people on several continents in random settings (drivers, waiters, co-workers, strangers on the bus), about my private life. The exchanges went something like:

“Do you have a husband?”

“No.”

“Oh. Do you have children?”

“No.”

“Oh. Are you broken?”

Broken. That was a word I heard more than once in the Middle East, Africa and Asia. To be honest, I felt broken. I WAS broken. But I didn’t need to hear about it from strangers. Others closer to me said, “…how odd…you’re the first person to have a fertility problem in our family”. Also not helpful.

It was a lonely road and it was painful. I had a few friends I could talk to but not many. I discovered that women really don’t know how to listen to a woman who has fertility issues. And men — forget about it. I learned to lie and tell people that I had a husband and children. I made up their names and lives. It was easier.

It made most really uncomfortable to talk about so I stopped trying.

No husband, no children, no uterus. 47 years old. The darkness was very real. The insomnia made it darker. The depression was pitch black.

I didn’t give up. I kept going to therapy. It helped. I started to exercise a bit (after 6 weeks). It helped. I had some down time at work — that helped. I wasn’t overly busy. I started to date someone. It helped(ish). I was trying to get life back on track — despite the absence of sleep. The insomnia continued but, like a lot of things, I learned to soldier on with life. I couldn’t wallow around in sleep deprivation and depression.

6 weeks turned into 3 months and that turned into 6 months. Different lover. Same issues. Sex didn’t solve the insomnia. I held hope that sex would elevate my hormones, overall, and sleep would return. It didn’t. Hot flashes, however, were calming down. My travel schedule returned and it was demanding. Every trip was an opportunity to get new blood work and seek medical advice. I needed answers. I was not sleeping, having hot flashes, and gaining weight — quickly. 6 months after the surgery I was 15 pounds heavier.

I knew that SOME temporary weight gain was normal. My new friends in my Facebook hysterectomy support group told me that weight gain came with the operation as did “swelly belly”. Swelly belly? The uncomfortable stomach “bloat” that comes when they remove the uterus and thus there’s more “room” for organs to shift around. I didn’t know about swelly belly and didn’t wear a “binder” (a medieval device that straps around your waist to keep all of the inner bits in place). So, I got significant swelly belly. (I can’t adequately describe the bizarre feeling about 2 weeks after surgery when I literally felt my internal bits moving around. It was like a scene out of Alien.)

No one could explain the PERMANENT weight gain. I was eating vegan, juicing, going to the gym every day. But I was gaining weight. A year after surgery I was up 30 pounds. Every doctor I saw told me that they didn’t understand what was happening OR they made up a problem that didn’t exist. A few doctors told me I was lying about my diet and exercise regime. There was “no other explanation for the weight gain”.

Obesity became a constant reminder of my surgery and it started to eat away at my confidence. I didn’t like the image in the mirror. I didn’t recognize the image in the mirror. My new body, at 200 pounds, was the biggest version of my self I’d ever known. My cute clothes didn’t fit and the “fat clothes” filled the closet.

I kept working. Traveling. Life was moving forward as it always does. I kept trying to adjust. The insomnia became “normal”. I learned to function on 3–4 hours of sleep a night. I was doing okay. I never felt great but I had okay days. And that became the new normal.

Two years after the surgery, I still had insomnia. I was up 50 pounds in total and weighed in at 220 pounds. I’d given up on feeling great. After 2 years and $30,000.00US spent consulting with doctors, specialists, and laboratories around the world, I had almost given up. The 2017 decision to grant permission to have my uterus removed was proving to be the most detrimental health decision of my life and I couldn’t recover from it no matter how hard I tried.

I entered my 49th year prepared to try just one more time to solve the stagnant weight and obesity, insomnia, and never-ending other health issues (pre-diabetic system, skin issues, joint pain, ulcer).

I was preparing to move to Singapore after 11 years in Kenya and I decided to give TCM (Traditional Chinese Medicine) a go. Western medicine had completely failed me. I told myself that if TCM didn’t work, I was done. I wouldn’t try anymore. I would embrace “okay” health and obesity and just stop.

I was desperate for Singapore to heal me.

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