Dec 7, 2022

Life in the Middle – Hysterectomy

Part 1

I had a fibroid. A lot of women have fibroid tumors. They’re not usually very serious. They rarely cancerous. My fibroid was on my left side and was sitting right on top of my bladder.

I first became aware of it in my early 30’s. I ignored it for several years. I wasn’t in the mood for surgery. It didn’t change its size for a very long time. And then, all of a sudden, as I entered my 40’s, it started to grow. Estrogen feeds fibroids and I think my last hormonal run as I entered into peri-menopause fed the little beastie. At the same time, I was having a lot of scans trying to figure out why I couldn’t get pregnant and it would always show up and it became clear that it was getting bigger AND it started to be painful during ovulation.

Eventually, it came to a point where the pain couldn’t be ignored. So I spoke to my gynecologist and she told me that, “…when they start to hurt, you remove them”. It sounded logical. It was about the size of a large orange. My bladder was starting to not cooperate — meaning — I was having a hard time “holding it”.

So, we scheduled surgery. I was living in Kenya at the time and I traveled to Dubai for the operation. The day before the surgery, I had a final consultation with my OB/GYN/Surgeon and I asked her if there was any reason to discuss a hysterectomy. I wanted to know if she thought that she would find anything pre-cancerous, etc.; and I wanted to discuss options should she need to make a decision while I was under anesthesia.

She told me that she would assess the uterus and that, if she felt as though there was a pre-cancerous concern, she would remove my uterus. I trusted her and signed some paperwork.

That conversation — that I initiated and I take responsibility for — ultimately led to having my uterus being removed and my entire body systems collapsing as a result.

I didn’t do enough research. I didn’t really consider all of the consequences and I take responsibility for authorizing a surgical procedure without doing my usual due diligence.

A quick review of jargon — every surgery has its own language.

Subtotal, supracervical or partial hysterectomy. The uterus is removed, but not the cervix.

Total or complete hysterectomy. Both the uterus and the cervix are removed.

Total hysterectomy plus unilateral salpingo-oophorectomy. This procedure removes the uterus, cervix, one ovary and one fallopian tube, while one ovary and one fallopian tube are left in place. This procedure is usually done if a problem confined to one ovary is detected at the time of hysterectomy. After surgery, the remaining ovary should produce enough female hormones if the woman has not reached menopause.

Total hysterectomy plus bilateral salpingo-oophorectomy. This is the removal of the uterus, cervix, and both fallopian tubes and ovaries. Removing both ovaries will cause surgical menopause in a woman who has not reached menopause because the production of female hormone stops when the ovaries are removed.

Radical hysterectomy. This procedure removes the uterus, cervix, both ovaries, both fallopian tubes and nearby lymph nodes in the pelvis. This procedure is only done in some women who have gynecological cancer.

Now that the “level” of surgery is clear, there are multiple approaches to the surgery itself and they include:

Abdominal: An incision (cut) is made in the abdomen to remove the uterus.

Vaginal: An incision (cut) is made in the upper vagina, and the uterus is removed through the cut.

Laparoscopic: A laparoscope, a lighted tube with a camera, will be used. Many small incisions will be made in the abdomen where the tool(s) is inserted.

Robotic: The surgeon controls a robotic arm to perform the surgery through small incisions.

I entered the hospital and prepared for a partial laparoscopic “keyhole” surgery. I would retain my cervix and ovaries.

Three very small incisions were made in my abdomen and the fibroid and my uterus were removed. I went into the surgery not knowing if I would come out without a uterus, so when I woke up from anesthesia I kept repeatedly asking, “…did she take my uterus?” But no one would answer me. Eventually, my repeated query must have concerned the nurses because my surgeon called to tell me that yes, my uterus was removed. She explained that she noted a very severe level of scarring and other side effects from Endometriosis. (Endometriosis occurs when bits of the tissue that lines the uterus (endometrium) grow on other pelvic organs, such as the ovaries or fallopian tubes. Outside the uterus, endometrial tissue thickens and bleeds, just as the normal endometrium does during the menstrual cycle.)

I stayed in the hospital another two nights and was released. At the time, I didn’t really understand what had just happened and how detrimental my decision was going to be to my health for the next 2 years.

I stayed with a friend for a week to recover before flying back home to Kenya. The misleading part about “keyhole surgery” is that you don’t have a great big scar on the outside to tell you how traumatizing the surgery is on the inside. I had three tiny incisions that were covered in big band-aids. I wasn’t bleeding. Ever. My belly was swollen but it would dissipate. Three days after my procedure I walked the outdoor track near my friend’s house because, “…I didn’t feel that bad”.

I flew home to continue my recovery with the surgeon recommending that I stay still and heal for at least 3 more weeks. I wasn’t warned about ANY side effects related to removing my uterus. I was shipped home and told that I was going to feel good in about a month.

Before I go on, I want to acknowledge that, at times, a hysterectomy is necessary and I genuinely feel for every woman who is facing cancer or other health issues that force the surgery.

Within about 10 days of the surgery, after I flew home to Nairobi to recover, insomnia settled in with such intensity that I was staying awake for 24–36 hours before being able to fall asleep. And the sleep only lasted 3–4 hours. Hot flashes came one after another, my taste buds stopped working, and my emotional well was collapsing. Mind you, NONE of these “side affects” had ever been discussed or acknowledged by my OB/GYN/Surgeon.

Miserable, crying, desperately wanting to sleep and incredibly depressed, I entered into a state that I never anticipated. I’d have to say that, even though the insomnia was overwhelming, my quick slide into a severe depression concerned me the most. A darkness surrounded my mind and my thoughts unlike any depression I’d ever known.

I reached out to a friend/healer/therapist and she advised that I needed to start actively go through a process of “mourning” my uterus. My mind and my soul were weeping and mourning. I found myself revisiting my previous infertility struggles and the fact that my womb was gone hit me like a tsunami wave that was drowning me.

At the advice of my therapist, I held a “ceremony” for my uterus — my infertility. I wrote to my body openly about the betrayal I felt because I couldn’t have a child. I felt betrayed because I was desexed — castrated — and I wondered if I was still a woman. The mind can do some amazing things and it can also do some pretty destructive things, as well. I was sleep deprived, physically in pain, and mentally destroyed — within 10–14 days of the surgery. I thought that I was losing my mind entirely. I didn’t have anyone to talk to because none of my close friends understood what I was saying. How I was feeling. I was told that, “no one in our family ever had a problem after their surgery”. Not helpful. Things were dark.

So I wrote. I wrote 25,000 words in 3 days about my sexual abuse as a child, infertility, anger, despair, the surgery — anything and everything. My entire “sex” — mentally and physically was addressed in my journal. Writing has always been cathartic for me and it was never truer than during the early recovery days.

While I wrote and mourned the loss of my womb, I started to look for answers. I truly enjoy research and I began to feel empowered as I learned more and more about hysterectomies, side-effects, and possible solutions. I joined an amazing support group on Facebook called Supporting Each Other : Before and After Hysterectomy and found relief. This group, and there are others, is exclusively used by women who have undergone a hysterectomy or who are scheduled to have the surgery.

The group saved me and still supports me. I can discuss anything and everything and there are hundreds of women who understand. They also have answers. They confirmed that insomnia is a side effect of the surgery. Depression, fatigue, sadness, taste buds, weird body odor (that goes away over time), “swelly belly”, the list goes on and on. All side effects. These women know more about the surgery than my doctors ever expressed and they are largely the reason that I didn’t completely lose my mind.

About 4 weeks after my surgery, I flew back to Dubai for a check-up. I sat down with my surgeon and immediately told her that I was suffering from extreme insomnia. She told me that there was no correlation between removing my uterus and insomnia. She also told me that my mental health issues were not related and that I was hysterical and needed to see a psychiatrist. Thankfully, there was a small part of the “fighter” in me that was still intact and it told me to leave. I didn’t listen to this doctor — I listened to myself. I got up, told her she was “fired” and walked out. I got a copy of all of my records and never returned. I found another doctor in Dubai the next day. She was older (mid-50’s) and from Beirut (known for having great doctors). She said, “of course you’re not sleeping…the uterus helps stabilize your entire hormone system and now that it’s gone, your body is going to have to completely recalibrate. Your depression is very common.”

Right. So I wasn’t crazy. Insomnia was normal. Depression was normal.

My new doctor told me that it would take “at least a year” before my body settled down. A YEAR.

And that included weight loss. The 15 pounds I’d gained in the 18 months leading up to the surgery that I could not lose would not go away for a year, she said. I would only start to lose weight again once my hormones reset.

So I tried to accept the fact that I had to wait.

What I did not now then, and have only recently discovered (after a two year journey with doctors) is that I suffered a “total system collapse” as a result of the surgery.

Part 2 — coming next-Collapse.

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