This under-researched condition, possibly a variant of endometriosis, can be a critical consideration particularly for patients with endometriosis. The definition is of endometrial glands and stroma growing within the myometrium of the uterus or in other words not dissimilar to endometriosis but growing in the wrong part of the uterus. I liken it to having a “bruised” uterus and certainly that is what it can look like. The attached image shows a patient with severe adenomyosis and endometriosis. It is hardly surprising that many patients complain of significant pain and discomfort. We don’t know why it develops in some people and not others, nor do we know the cause. It can be difficult to diagnose, particularly in the early stages. However, there are subtle signs that can be picked up on ultrasound and MRI. Laparoscopy surprisingly may not offer a diagnosis as the condition is in the walls of the uterus and looking at the uterine cavity from the inside or the uterus from the outside may not reveal the changes. By the time it is obvious at laparoscopy the changes are usually significant.
It is probably a progressive condition that can result in significant menstrual associated pain and discomfort. Other symptoms include pain with sex and passing urine and bowel motions, fullness, backache and bloating. It has been linked to fertility and obstetric problems such as infertility, miscarriage and premature delivery although the literature is controversial and mixed. Traditionally it was thought to arise after women had delivered several children usually in their 40s.
In recent years I am seeing increasing numbers of much younger women (some in their early 20s) who have had ultrasounds predicting this diagnosis. There is a significant crossover with endometriosis and patients with severe endometriosis often will subsequently have adenomyosis diagnosed. Some consider that it is possible to get a “focal” form of the disease and that it is possible to excise these areas. I am sceptical of this view. When operating on this condition there are no “surgical planes” to dissect out in contrast to a fibroid which has a type of shell (not dissimilar to peeling a banana). Since adenomyosis has no planes, the operator has to resort to excising normal and abnormal tissue with the decision purely based on “feel”. Focal adenomyomectomy in my experience almost invariably recurs and whilst there may be some short term benefit in this type of surgery I am concerned the risks may not be worth pursuing. If you consider removing a portion of the uterus is similar to removing a quarter of an apple it is difficult to then put the apple together again. This results in a significant weakening in the wall of the uterus such that the risk of rupture or issue during pregnancy becomes a problem.
It may be possible to manage the condition conservatively with progestogenic agents including Mirena and the like similar to endometriosis although none have been shown to decrease or treat the condition. There is a promising form of therapeutic ultrasound utilising high intensity focused ultrasound beams (HIFU). The technique does not require surgery and involves heating the affected area. For some patients this holds great promise. More about this in another blog. The difficulty is that the ultimate cure involves hysterectomy. For some people this can’t be done fast enough and results in a massive relief of symptoms. In ideal circumstances this occurs after childbearing has been done and patients are extremely grateful. In patients who are much younger it is a devastating blow. If you are unlucky enough to have adenomyosis in combination with endometriosis when you are in your 20s you will face a difficult conundrum. For most patients with endometriosis we can often delay or defer the situation for some time and most people can achieve a family. In the setting where you have both conditions you may not have the option of deferring pregnancy and this clearly represents a major problem. For patients with severe endometriosis involving the ovaries we can freeze eggs and still have hope of a pregnancy but if severe pain as a consequence of adenomyosis becomes an issue women may be forced to consider hysterectomy.
More research is desperately needed into this much unappreciated condition.