Adenomyosis
Endometrial-type tissue within the muscular wall of the uterus. Often coexists with endometriosis and is frequently missed.
Adenomyosis causes heavy, painful periods and a uterus that is often tender and enlarged. It commonly occurs alongside endometriosis, which is one reason a patient can have excision surgery and still have pain afterwards if the adenomyosis was never addressed.
What it is, and what it does
Adenomyosis is tissue that looks like the lining of the uterus, growing inside the muscle of the uterus. That places it halfway between the lining and the outer surface, which is where endometriosis is usually found.
The two often go together, though not always. Where they sit matters less to you than what they do.
Endometriosis causes trouble in the organs away from the uterus: bowel symptoms, bladder symptoms, and frequently very sharp nerve pain. Adenomyosis irritates the muscle it is sitting in, and an irritated muscle does the one thing it knows how to do. It squeezes.
That squeezing is inflammatory, and it produces severe cramping in the dead center of the pelvis, rather than off to one side or higher up in the abdomen.
What it feels like
Along with the cramping, it usually means heavy bleeding and blood clots, sometimes clots with grayish or whitish tissue caught in them. Low back pain is common too, because that is where the nerves from the uterus travel.
Not everyone has all of it, and some people have it a great deal worse than others.
It is very common and probably underdiagnosed by a wide margin, so it belongs in the picture whenever we are working out where someone's pain is coming from.
Why it gets missed
Partly because it is not being thought of, and partly because it does not show on imaging as plainly as something like a fibroid.
The uterus is often a perfectly normal size. Looked at carefully, an ultrasound may show it slightly thickened from front to back, and rounded. Someone who reads these scans all day can also pick up an irregular contour, and areas of adenomyosis that resemble fibroids. Those are called adenomyomas: the shape of a fibroid, made of adenomyosis.
There is often a mismatch between how small the uterus looks and how much trouble it causes. Patients describe it as a hot bowling ball in the pelvis, or a spiky one. That gets the inflammation, the weight and the pain across better than a measurement does.
Radiologists set a high bar before they will write the word, so plenty of people hold a report that never mentions adenomyosis while having every symptom of it. That is a reasonable way for a radiologist to work, because they are reading an image rather than sitting with you and going through your history. Putting the history and the imaging together is usually what makes the diagnosis clear.
Telling it apart from endometriosis
Most of the time we can, and the timing does much of the work. Adenomyosis symptoms track the period closely.
One pattern is worth knowing about. Pelvic floor muscle spasm and discomfort often begin a few days to a week before any bleeding starts, as though the adenomyosis sets the muscle off ahead of the period. It is classic enough that when we hear it, we look hard for muscle spasm, because adenomyosis tends to drive it and that makes the third problem worse as well.
What can be done without an operation
Short of a hysterectomy, treatment is still mostly hormonal, and there are a lot of options. Some are tolerated better than others.
In practice there is a complication. Those hormonal methods run into the endometriosis, which makes its own estrogen, and people get significant side effects from birth control that should have been straightforward. It is frustrating, because all they wanted was lighter periods, or none.
So the endometriosis often has to be removed first. Once it has been, many more of those options become usable: settling the uterus down, making periods lighter or stopping them, and reducing the cramping.
Adenomyosis also drives up inflammatory chemicals called prostaglandins inside the uterus, which is why ibuprofen and the rest of that family help to a degree. There is a real limit to how far they go.
When a hysterectomy is the right operation
A hysterectomy will not treat endometriosis, because endometriosis is fundamentally outside the uterus. It has often been performed in the hope that it would.
Some people who had one for endometriosis did feel better afterwards, and the reason is usually that adenomyosis was part of what was wrong and the operation dealt with that part.
What we are trying to do is give you the options you actually want. If you do not want to conceive in the future, and you do not want to manage this with hormones until menopause, and you have had enough of periods, then a hysterectomy is an entirely reasonable way to get where you want to go.
If instead you want the endometriosis treated and the adenomyosis calmed down, with your uterus kept for a possible pregnancy later and your chances of conceiving protected, that is also something we can do.
These decisions are complicated and deeply personal, and they need a conversation rather than a rule. Some of those conversations are hard, and some of them end in uncertainty. That is the reason to have them properly.
Where we have seen regret
The regret we see arrives the same way each time. Someone was told a hysterectomy would improve their endometriosis symptoms, had the operation, and felt no better afterwards. They are left believing they gave up options and are still in pain.
That is why the adenomyosis symptoms and the endometriosis symptoms get separated out before anyone operates, and why the conversation covers what you want your life to look like on the other side of it.