So, on the day of diagnosis, I thought these two uterine disorders were the same. In fact, not so long ago, they were considered two variations of the same condition. They also co-occur in many women. However, endometriosis and adenomyosis (add-no-my-o-sis) have important differences that affect treatment options and chances of fertility. I will discuss the similarities and differences over the next two blog posts.
First, in order to understand these uterine disorders, one needs to understand a little bit about the uterus and how it functions. To keep things simple, I will only talk about the two general layers of the uterus that are relevant to adenomyosis: the endometrium and myometrium. The myometrium is the muscular layer of the uterus, and the endometrium is a much thinner inner layer that builds up during a woman’s cycle and then sheds, which leads to the blood that we commonly call a “period.”
So, the width of the endometrium changes based on the time in a woman’s cycle and the amount of estrogen being emitted. If an egg is fertilized in a given cycle, it will travel through the fallopian tubes to the uterus, implant in the endometrium, and initiate a pregnancy. If the endometrium is too thin, then the egg (technically called a blastocyst at this point) would not have enough room to develop, which would put the pregnancy at risk. If the endometrium is too thick, it hardens, and the fertilized egg cannot implant at all. An endometrium that is too thick will also mean heavier, painful periods, more fatigue, and other health problems because of the additional blood loss.
When they examined my uterus, they found that my endometrium was very thick. So thick in fact that one of my fallopian tubes was entirely blocked. They “shaved” my endometrium as much as they safely could. They also removed polyps that had grown in my uterus, again due to my endometrium growing too much.
To recap, I had a blocked fallopian tube, an endometrium that was too thick, and polyps in my uterus that wouldn’t give a baby enough room to grow. It’s no wonder “just relaxing” didn’t help me get pregnant during the 10 cycles that Ben and I tried.
When a woman has a hard time getting pregnant, it really,really might be something besides her trying too hard, thinking too much, or stressing herself out. If we do not know why a woman has a hard time conceiving, then perhaps we should stop giving advice. We are, most of us, not doctors, and not every doctor is a fertility specialist. So, we need to stop telling women what to do and telling them to “relax.” It is the least relaxing advice we can give.
On the bright side, the polyps they removed were benign (i.e., not cancerous). So, that’s a win. That’s a definite win.
But back to endometriosis and adenomyosis. In both cases, one’s endometrium has gone wild. It’s growing like a weed and in places it shouldn’t. With endometriosis, the endometrial tissue grows outside the uterus, like on a woman’s ovaries or bowel. With adenomyosis, it grows excessively inside the uterus and in the uterine muscle or myometrium.
Now, why is it a problem to have one’s endometrium growing wildly?
As I mentioned, the endometrium grows at the command of estrogen. If a pregnancy is not initiated, then that endometrium will shed. This is, as mentioned above, what leads to a woman’s period or menstruation. The signal for the endometrium to shed is given to all the endometrium in the body, not just the endometrium located inside the uterus.
So, imagine if you have endometriosis, and your endometrium is growing on your ovaries, it will also shed around your ovaries. However, that blood has nowhere to go, and it doesn’t just evaporate on its own. Every month, the endometrium will grow, and more blood will shed into your body with nowhere to go. This can lead to severe pain and many other issues that can significantly affect a woman’s quality of life. BBC Stories did an informative special with women who have endometriosis that you can check out here.
In the case of adenomyosis, the endometrium is growing in the muscles of my uterus. Every month when it sheds, my uterus gets a little bit bigger because the blood that sheds in my muscle has nowhere to go. Imagine if every month your uterus gets just a little bit bigger. These months turn into many, many years. Suddenly, the space available for the surrounding organs gets smaller. Like me, you might have bladder problems because your uterus is constantly pressing on the poor organ.
Of course, the uterus is an organ designed to grow, but if it’s already growing on its own, then would a baby have enough space to develop to term?
This is how adenomyosis affects fertility. The excessive endometrium eats up the space for a baby to grow. Also, the endometrium uses up a lot of the nutrients that are meant to support the growing baby. This can lead to embryos not developing at the rate they should or to pre-term births.
In fact, women with adenomyosis are at higher risk of miscarriage, still birth, preeclampsia, pre-term birth, and every other pregnancy-related complication out there.
That is, of course, if they can get pregnant at all.
The chances of becoming pregnant and having children are complicated by factors of age and the spread of the condition. If you who are reading this because you have been diagnosed with adenomyosis, Dr. Keith Isaacson gives a talk about it here; keep in mind that it is geared towards an audience with a medical background. However, I found it useful, and I am happy to know there are doctor’s like him out there trying to preserve his patient’s fertility.
What I like about his talk is that he mentions how underdiagnosed adenomyosis is, how it is too frequently misdiagnosed as endometriosis or uterine fibroids, and that it can occur in women as young as 17-year-olds. Unfortunately, some information on the Internet will tell you that this disease is common in women in their late thirties and forties. However, this just means that it is more commonly diagnosed in this population. His talk really spoke to my experience as a 16-year-old trying to figure out why I suddenly had such painful periods and back pain.
He also talks about the relationship between adenomyosis and infertility. Endometriosis can cause infertility, and this is a sad truth. Even sadder is that adenomyosis does so at a higher rate. This is because it primarily affects the organ that is involved in developing a pregnancy, your uterus. For women that have both endometriosis and adenomyosis, the fertility rate is even lower. I apparently only have adenomyosis.
So, that’s another win, right?
Of course, one’s ability to have children is not everything. I think it would be one thing to tell me that I cannot have children. I think what concerns me is all the other side effects and the lack of good treatment options. The only “cures” available for adenomyosis are menopause and hysterectomy. Menopause is the result of a significant decrease in the production of progesterone and estrogen, the hormone that causes the endometrium to grow. So, in say 20+ years I will have a natural cure to the disease.
In the meantime, though, I can anticipate pain, sometimes to the level of going through labor. Complete and utter exhaustion. Anemia. Bladder problems and more. And every month my uterus gets a little bigger, so the problem gets a little worst.
The other option is to remove my uterus entirely.
I once saw a person with endometriosis write online, “At least you can cure adenomyosis.” The logic is that at least a doctor can remove one’s uterus, and the labor like pain and other symptoms will normally improve. In contrast, with endometriosis, the endometrial tissue growing outside the uterus cannot be solved in the same way. Even if you remove it laparoscopically, it often just grows back.
So, maybe that’s another win.
I have at least two options to deal with the pain for good. Of course, I’m 20+ years away from menopause, and a hysterectomy would eliminate any chance I have of pregnancy. But I at least could opt out of the pain if it became unbearable.
I guess my point is that the uterine disorder I have is a difficult to diagnose and live with. It is different from endometriosis in important ways, but how the two conditions affects a women’s quality of life are about the same. Whichever one a woman has, she will face many challenges in getting good care, having children if she wants to, and being taken seriously.
This is because this uterine disorder is not visible on the outside, and even the symptoms are treated as just “bad period pain” that women should somehow be accustomed to dealing with by now. But…
Some days, I don’t know how I make it to work, the pain is so unbearable.
Some days, I don’t know how I stay awake, when the fatigue is so all encompassing I feel I could faint.
Some days, I don’t know how much longer I can fake it.
Some days, I pray and pray and pray. Just one more hour, Maxi. You can make it.
**The featured image is a side view of a uterus drawn by Dr. Jane. The circles in the center are the polyps they removed. The dots all over the picture are the endometrial tissues growing in the muscle of the myometrium. The very dark line is meant to show that one of my fallopian tubes was blocked. Of the Chinese words on the page, one of them is 子宫肌腺症, or adenomyosis.
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