In the last post, I mentioned that there are only two “cures” for adenomyosis: menopause and hysterectomy. A hysterectomy would eliminate any chance I have of becoming a mother, and menopause is not a much better option.
Except they can simulate it with drugs, like Zoladex and Lupron.
The endometrial growth that causes adenomyosis happens at the signal of the hormone estrogen. So, what if we inhibit the release of the hormone estrogen for a few months? Well, you have simulated menopause. Of course, this comes with all the problems normal menopause can bring, like migraine, hot flashes, depression, difficulty sleeping, a lack of interest in doing anything at all, hair loss, loss in bone density, weight gain, etc.
I got three shots over the course of three months to inhibit the production of estrogen. The first month was the worst. Here’s an email I wrote to my boss Don to tell him I could not participate in a performance involving the DKU Band:
My period is back again after stopping for about 8 hours. Whew… glad I got a break. *eye roll* With its return, I’m in incredible, can’t move kind of pain. So, I will miss this evening after all. This is concerning… I feel like my body can now immobilize me whenever it feels like it. Anyway, I’m trying to get in touch with the doctor to ensure this is all normal, and I’m just believing this round of meds will help reduce the adenomyosis. Pray for me, please. I’m suffering.
Pray for me, please. I’m suffering.
So, here was how these meds or stimulated menopause affected me specifically. The decrease of estrogen meant that all the endometrial tissue in my body would shed like it normally would when a woman gets her period. However, since the estrogen will not increase again during simulated menopause, the shedding just continues. This meant I had a three-week long period after the surgery. Including my normal period before the surgery, the bleeding from the surgery, and then the simulated menopause, I bled 25 out of the 30 days of April and into the first week of May. You can imagine the level of fatigue and pain. Remember, the endometrial tissue shedding into the muscle of my uterus still has nowhere to go.
On the bright side, Ben’s dad got out of the hospital at the end of April and was recovering well. Here’s an excerpt from an email I wrote, Stephanie, a close friend:
Ben’s dad is doing much better, and the near-death experience has definitely made him more amiable. You can just see it in his eyes. When we come over, he smiles this big smile. I can tell he’s happy to be alive and to have family around. He’s said himself that he just needs to focus on his own health and not worry about the rest. Everybody has their own problems, and he just needs to be grateful and take care of his health. He also doesn’t need to worry about our (my and Ben’s) decisions and life so much; we’re actually doing alright. We are considerate children. Can you believe that?
I then explained to her the ways in which simulated menopause was a lot like the real thing.
As for simulated menopause, I fear it comes with all the exciting things. I can’t wait to have a good night’s sleep again. I’m either awakened because I’m too hot, too hungry, too nauseous, or in too much pain (normally migraines) at all times of the night. Yesterday, I got to work, and I said to Don, “I need to go back to sleep.” My head was hurting so bad, I was barely able to do even that.
The good news is that I taught a graduate and undergraduate class this semester, and the graduate class started and finished early. So, right now, I’m only finishing up one class. This allows me to teach in the morning and pass out in the afternoon if I have to. Last month was worst than this as my period came somewhat continuously for 3-weeks. On some days, I was in immobilizing pain. I actually had my acupuncture doctor make a home visit to help with the pain one day when I couldn’t even walk to the bathroom. Now, my period has stopped, though I still have cramps (probably from the adenomyosis), but not at the same labor pain level.
I’ve never experienced normal menopause, so I don’t know how it compares to simulated menopause, but there’s just this drastic change between me now and me two months ago. The most annoying part being the lack of interest in doing anything at all. I can feel the mental effort I have to put into planning lessons, grading papers, etc. Sometimes I feel really lonely and desperate and out of control.
I do not know how simulated menopause compares to real menopause, but becoming suddenly menopausal at 28 was like being pushed out of a helicopter into a tumultuous ocean without any swimming gear. There were times when the pain was so severe, I wasn’t sure how I was surviving it. There were too many days in the 4 months of menopause when I was simply taken down, completely immobilized, unable to even walk myself the few feet to the bathroom.
Have you ever seen an infant cry because they are sick? The way they seem barely able to manage the suffering? The way they search for any means of comfort whether from their guardian or their beds or a stuffed toy, but with no luck? Sometimes even the respite of sleep is beyond them?
That was me on too many days this year.
Ben. It broke his heart to watch. He constantly asked, “Babe, what do you need? How can I help?” He seemed to be trying to transmit his strength to me on those days as he used his full body to lift me out of the chair, guide me across the room as I wept in pain, just to get to the bathroom.
He wasn’t the only one.
There was a day at work where I felt light-headed, then I needed to sit down, then Don had to hold me up as I made the slow walk to my colleague’s car, so she could drive me home. Everyone whose office was on that hallway saw as I leaned on the wall on one side, Don holding up on the other, tears streaming down my face. I closed my eyes. I couldn’t stand to see the pity reflected back.
Just a couple more steps Maxi. You can make it. Just a couple more steps.
The head of the university’s emergency management team also had his office on that hall. He wanted to take me to the hospital immediately. I wanted to go home. There was nothing they could do for me at the hospital. There was no cure for 28 and menopausal.
The symptoms of menopause started to become their own experience. I forgot about the adenomyosis for a while. I just wanted the menopause to end. I was tired of the hot flashes which brought with it bouts of nausea. I was tired of the disinterest in work and life. I was certainly sick of the migraines.
One day while at Ben’s parents, a migraine came upon me. First, I was just light-headed, then I was weak, and then I was immobilized. Ben’s parents upon seeing me like this where incredibly concerned. We had not mentioned that I had adenomyosis; we were not sure it would really mean anything to them if we did. Also, Ben’s dad was himself recovering from surgery. We did not want to add any stress.
Watching Ben all but carrying me to the bathroom that afternoon, Ben’s dad said, “How does someone so young have so many medical problems?” Ben was immediately incensed. I didn’t care. I couldn’t. When you reach this level of physical pain, emotional pain does not register. I did not have the mental capacity at that time to concern myself with how Ben’s dad felt about my migraine.
Once the migraine lifted, I told them the doctors had given me this medicine after the surgery. I explained how it had severe side effects like migraine, but in a couple more months, the medicine should be out of my system. Also, hopefully, the drug will have helped with the initial problem in the first place.
Yes, the initial problem. The adenomyosis. It was so easy to forget amongst the suffering of simulated menopause. Additional side effects of the drug included the feeling of a burning sensation in my feet accompanied by rashes. I also gained 10 pounds. Though it didn’t look like it, I could feel the difference when I tried to put on my pants. I also literally developed carpal tunnel syndrome overnight, which has fortunately been improving in recent months.
But even amongst the suffering, there were so many people to be grateful for. My colleagues were exceptionally kind and patient. They offered to cover my classes. They helped hold me up when I could not stand by myself. I even had one colleague who was also going through menopause, and we could commiserate about how awful it was together, which helped me feel less lonely. Also, my research partners gave me a lot of leeway, and I cannot thank them enough for not giving up on me. My family and friends were extremely supportive, and some friends in particular let me go on and on in detail about my suffering. I cannot thank them enough.
In June, I sought support through the site Betterhelp.com, which provided me with English-capable, professional mental health counseling from the comfort of my home in China. Through this resource, I was able to talk about all the things that were happening to me and how it made me feel or not feel anything at all. I could also get some advice from a woman who knew all about menopause herself.
I was also grateful for Ben. I cannot say enough about his love and support during this time.
No matter what, every day I wake up and Ben wakes up, I have a lot to be thankful for.
**The featured image is of a new-born puppy Ben and I puppy-sat for a week in June. He really liked my feet, rashes and all.
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