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What I've Had to Consider as I Decide If I Should Get a Hysterectomy

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Several years ago, I was diagnosed with adenomyosis via ultrasound. I was at the doctor for something unrelated, and while I was there I mentioned that I was having a lot of back and hip pain, and we did an ultrasound and now here we are.

Adenomyosis can’t be seen to the casual observer. Simply put, adenomysois is when the uterine lining grows into the musculature of the uterus, rather than growing along the inside, and it can cause a number of problems. It often presents with endometriosis, and they’re similar, but definitely not the same. There’s no “typical patient” with adenomyosis and the disease is not well enough understood to determine the cause. What is clearly understood is the only cure is a hysterectomy, and the symptoms vary from person to person, but can be debilitating. Symptoms range from minor pain to infertility to inability to have physical intimacy, and these are just the beginning. It can be life-changing, as it was for me. Treatments vary. Almost everyone I know relies on Nonsteroidal anti-inflammatory drugs (NSAIDs), but I have also done pain management interventions (think steroid injection or radiofrequency treatment).

To me, adeno feels like someone is sitting on my uterus and braining my fallopian tubes. The pain is constant. It’s a constant heavy downward pressure, and it radiates down my thighs into my hips and my lower back. It changes my posture and the way I walk. Half the time, every step is a stabbing sensation through my pelvic region. It’s not just this heavy, dull aching pain with a stabbing feeling. It also burns. Exercise is difficult on any given day but on a bad day, everything from my belly button to mid-thigh is swollen and tender. This morning when I woke up I was so bloated my regular clothes didn’t fit and I genuinely looked pregnant. I’m not being hard on myself. I really was that swollen. This happens fairly frequently.

For the past few years, I’ve gone through different hormone therapies, a “medically induced menopause” called Lupron, I’ve had steroid injections into the nerves so that I just don’t feel the pain, and I’ve had a radiofrequency treatment (kind of like cauterizing those nerves). I couldn’t tolerate these pain management procedures because I also have Hashimoto’s and fibromyalgia. Although they were temporarily effective, they caused significant flares in my other illnesses. I have taken pain medication almost daily, I can’t workout on a regular basis, and I limit my activities so that I don’t aggravate my already inflamed uterus. On my worst days, I have been unable to walk and I have missed work.

This takes such a toll on me emotionally. Last week, I worked a volunteer event on Saturday and had to cancel something that was important to me on Sunday because I couldn’t walk. I just overdid it. I cried. It’s exhausting to be in fairly constant physical pain. It’s emotionally draining and heartbreaking to be so inconsistent, when I used to pride myself on routine. I used to run 20 miles a week, I’ve run 20 half marathons, and I was always an energetic social butterfly and I loved my life. I still love my life, but I unfortunately have much less energy and enthusiasm. In my case, it’s not just the adeno, but the adeno alone does change one’s life and does cause extreme fatigue. How could you be in pain constantly and not be fatigued?

I went to the gynecologist two weeks ago and her words exactly were, “It’s time to look at hysterectomy. We’ve exhausted our options.”

I thought hard about what to do. Why should I have this surgery? Why should I not have this surgery?

An obvious concern is that I haven’t had biological children. I didn’t even think about having kids until after I was diagnosed, and two different specialists said I’d have to pursue fertility treatments. I decided not to go that route. But I’m embittered because I feel like being without biological children was not a choice I made. The choice was taken from me. I could have frozen my eggs or whatever needed to be done, but the bottom line is I most likely couldn’t carry a child to term regardless of how I got pregnant. That ship sailed while I took for granted that I’d be able to do it when I was ready.

Other than that, a reason to not have surgery is the recovery period. It is not a minor outpatient procedure. I have been told that it takes a week to be able to walk around easily, five weeks after that to lift five pounds, and another two weeks after that for physical intimacy and regular exercise, then a whole year to be fully recovered. Hot flashes, fatigue, mood swings, general weakness.

However, I see this differently than the pain I’m in right now. I will have pain for the next year if I have surgery, but if I don’t then I’ll have pain until menopause. I’ll be recovering versus getting by. Slowly, I’ll get closer to the version of myself that I want to be. I’m not looking forward to recovery, but I am looking forward to getting my life back. This has been a long ride and I’m ready to get off.

It’s important to think about the support I’ll have at home, too. I’m so fortunate to have a small but solid support network, so I know I’ll be OK. My employer understands and has wished me well. I know I’m lucky. Both of these factors cause others to delay surgery. I’m also incredibly blessed to have two different health insurances. Otherwise, this would be several thousand dollars. I recognize that I have resources many don’t, and I’m grateful.

With all of these reasons to have surgery, and not a single one to delay, the decision is made. So now the surgery is scheduled, and I’m just ready to get it done. Waiting for surgery is difficult. I’m just anxious to get on with my life.

Getty Image by Ranta Images

Originally published: July 19, 2018
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