Here I am, at 38 years old. I have had my adenamyosis diagnosis exactly 1 week. I’ve been suffering on and off for 23 years.
My first brush with the condition was when I was 15 years old, and I woke up at about 5 am on a Saturday morning with unbearable cramps. I was sweating and faint. I crawled to the bathroom. I vomited. I laid on the floor because the coolness of the tile was soothing, and I was floating in and out of consciousness. I could barely get above a whisper to call for my mom. It took her about 20 minutes to come, which felt like an eternity. This was all new to me, as I had started my period at 11 and never really experienced strong cramps until that day. That was the day everything changed in terms of period management.
When that time of the month came, I learned that humming created vibrations that calmed and soothed me, and would also exhaust me enough that I would fall asleep to get through the pain. I ended up going to the gynecologist for the first time at 16, where the (MALE) doctor tried to quell my fears of my first pap smear by saying, “Oh it doesn’t hurt. It’s like childbirth, it’s not so bad.”
I immediately distrusted him.
He put me on birth control, and I promptly felt the crazy set in. I didn’t like the way it made me feel, I had strong concerns about putting synthetic hormones in my body (this was 1995, and there wasn’t enough scientific research on what long-term use of birth control does to the body. It had only been around 30 years or so at this point. Crazy to think about now.) I stayed on it about a year, and was like, nope. I’m done. I can figure this out.
I was wrong. A couple months after I quit the pill, I found myself on the floor as the entire school walked by, staring, wondering what was wrong with me. I managed to get down to the nurse’s office with some assistance, and I hummed myself to sleep until my dad could come and get me. The rumors went flying - I was dying, I had to be rushed to the hospital, I was going to be gone for weeks…
Same distrustful doctor puts me back on birth control. Gives some bullcrap about “affecting my fertility if I let the cramps continue without hormone therapy.”
One of the millions of examples of the Western (particularly American) ways of putting a bandaid on the problem rather than addressing the problem itself.
This dance went on for years. I stayed on the birth control until I was about 23, when I really couldn’t see why I needed to keep it going. A couple months later, the cramps promptly started up again.
The pill made me crazy and depressed. The absence of the pill made me sick and affected my quality of life. I did this dance for years. I tried new kinds of birth control, I got ultrasounds, none of which had definitive answers. Even if it had answers, how to move on was never discussed.
My distrust for my initial doctor started to spread to all the others I subsequently saw when, after I would ask what could be done about my cramps without taking the pill, they would give me the same tired answer, “I don’t know.”
The incompetence and laziness in this response was insurmountable and I just couldn’t see how these people are paid so much money and have so much expertise and couldn’t give me a good answer on how to move forward.
As I got older, my quality of life during period time became worse. For years, I could have a day of severe cramps, go hide in the bathroom at work, and somehow carry on.
But as I entered my early 30s, the amount of blood I was losing was becoming increasingly more and more. I was missing work days because of it. I was spending a small fortune on products. I couldn’t keep going like this.
But I did, for several more years. I went back to try to get a diagnosis at 34, and was met with the response, “Well, gee we can’t seem to find anything specific! It seems like it might be a varicose vein in your uterus. Birth control can help!”
Feeling defeated and broke from the $1500 that I had to spend out of pocket (American Health Insurance is a joke), I gave up researching for another 3 years.
I went to Thailand and got Chi Nei Tsang (abdominal massage). The practitioner said to me, “You have a very large cyst on the right side of your uterus.”
She was not wrong. I could feel it, and I described my issues to her. She recommended to see my doctor at home. So I did. And again, felt like a dead end. I got a biopsy, which came out negative. But then I was given an alternative for the cramps! We were getting somewhere!
Except, the recommendation was to get a hysterectomy.
This was so incredibly baffling. In 2017 (a year ago now), how is a hysterectomy the only way? Do we not care about our women at all? HOW can this be the only solution??
I got frustrated, yet again. I stopped searching, yet again. I got sick during my periods yet again. I had, however, found the magic combination of 800mg ibuprofen a day or two before my period did seem to help.
And the bleeding over the last couple of years continued to get worse and worse and worse. Just this January, I armed myself to go to the grocery store by putting in my super plus tampon, my lining, and pads (I have a Diva Cup, but I can’t even begin to look at using that thing until at least day 4 of my period). So the cramps weren’t really there as I had taken the precautionary 800mg of ibuprofen for a few days. But the bleeding. OH the bleeding. While it wasn’t the first time this has happened, it was the first time I just...stopped caring. I no longer cared that I’m standing at the frozen foods isle with a stream of blood running down my leg because the pool had overflowed. I had black pants on! No one could see. I know longer felt rushed to take care of the issue, because fuck it. Let me just live in my disgusting filth because at least I’m not feeling overwhelmed to get to the bathroom. I was actually pretty psyched that I managed to squeeze my vagina tight enough that it didn’t leak onto my seats when I finally climbed back into my car for the short drive home.
The dam had opened. That’s what this whole experience has felt like...like a dam holding the water back, and it finally breaks.
And then February comes. I did my precautionary steps, took my ibuprofen…
And then 1:30 am on Feb 14 comes along. I wake up from pain, and drank some water and rolled on my stomach to give it some pressure. After some time, it wasn’t working. I went upstairs. I started sweating. I started humming. Humming wasn’t working. I vomited. I was grey. I had diarrhea. I tried to vomit again. The cramps got worse. My boyfriend had stepped in by this point. He brought me towels. He brought me a heating pad. He held me up as I was passing out. We eventually went to the emergency room. The pain was not subsiding after hours and hours. I finally got a pain shot. I had to take the day off of work.
I told a friend. She suggested Adenamyosis, and that she would talk to her boss. So I got fast tracked into the doctor’s office because I got friends, y’all, and here we are. I have a $3000 bill from the emergency room, a prescription for progesterone to help shrink it, and i’m now on a detox diet (I’m barely sticking to it) to get me feeling better until we can come up with a viable solution. I refuse to get a hysterectomy.
So here’s to hoping some changes and a detox and non-birth control progesterone helps. It’s been a rough 23 years.