A guest blog for Adenomyosis Awareness Month
Kathleen King returns to the BGP blog to mark Adenomyosis Awareness Month, telling us about this little-known but highly significant condition. Katheleen is a medical scientist, endometriosis advocate and former chairperson of Endometriosis Association of Ireland - read her blog about endometriosis here.
Uterine adenomyosis (ad-en-oh-my-o-sis) is a little-known, under-researched and highly significant condition, which causes heavy, painful periods and has a range of major impacts - on both day-to-day life and big life choices, especially around pregnancy and having children.
Adenomyosis affects between 20% and 88% of those born with a uterus - we don’t actually know how many, since a hysterectomy is required to make a definitive diagnosis. There has also been an assumption that this is mostly a disease confined to older individuals who had undergone multiple pregnancies, but emerging research and case studies show that adenomyosis affects all ages and not just those who have a history of pregnancy.
It is also commonly seen in individuals with endometriosis (which I wrote about last month) and the symptoms overlap considerably - but it is not the same disease. Whereas in endometriosis, tissue similar to the lining of the uterus is found elsewhere in the body, adenomyosis occurs when the kind of cells (endometrium) that normally line the inside of the uterus (womb) invade the muscle walls of the uterus. The most common symptoms of adenomyosis are severe pain before and during menstruation, heavy menstrual bleeding, a "bearing down" feeling in the pelvis and lower back pain. The pain is more severe than “normal” period cramps and is not relieved with basic pain medication; it can also persist for days. It is important to realise that to experience extreme pain with your period is not “normal”. If you have missed a family or social event due to pain or heavy bleeding, or have a diagnosis of endometriosis, then adenomyosis should be considered. Adenomyosis can be present in those with fibroids, polycystic ovary syndrome (PCOS) and other gynaecological issues.
Individuals with suspected adenomyosis should be evaluated by their doctor using their menstrual and symptom history, pelvic examination, and imaging. Laboratory testing may be performed to evaluate for anaemia (from heavy periods). The uterus can feel "boggy" or enlarged on examination. Abdominal swelling, which can be quite severe, is present in many people. In many cases an enlarged uterus, pelvic pain and/or abnormal bleeding will be examined via transvaginal ultrasound; the images should be reviewed by a radiologist experienced in evaluating adenomyosis. If conservative surgery (to remove large areas of adenomyosis without removing the uterus) is being considered for adenomyosis or fibroids, an MRI is often performed to assist in surgical planning.
Adenomyosis can only be definitively diagnosed by removing the uterus (hysterectomy) and sent to the laboratory for a histopathology examination. This also removes all of the disease, but of course, is a major and irreversible operation with a range of consequences. However, it is generally preferred over alternatives as it can immediately improve quality of life by removing the source of the symptoms. Many of the drug treatments carry side effects and pain can remain a major symptom with techniques such as endometrial ablation and uterine artery embolisation. If a person with adenomyosis wants to have children, there are some alternatives, hormonal treatment and in exceptional cases, removal of the adenomyomas (dense areas of adenomyosis), which leaves the uterus intact. However, for those who wish to have children, it’s also important to note that adenomyosis may also contribute to infertility and pregnancy complications.
There are other treatment options that may reduce the heavy bleeding caused by adenomyosis, including:
IUD – An intrauterine device (IUD) is a small device that fits inside the uterus and is normally used to prevent pregnancy. One type of IUD, the Mirena coil, which releases the hormone progestin, might help with the symptoms of adenomyosis.
Endometrial ablation – This is surgery to cause scarring in the lining of the uterus, which makes periods less heavy. It is unlikely to reduce pain symptoms. Despite the similarity in names, this is not the same procedure as ablation of endometriosis.
Uterine artery embolisation – This is a treatment that blocks the blood supply to the uterus. For those who do not wish to have any future pregnancies, uterine artery embolization (UAE) may be effective for reducing symptoms related to adenomyosis. UAE is also an option for those who choose not to have, or cannot have, a hysterectomy or have found hormonal treatment unsuitable due to side effects or ineffective control of symptoms.
Uterus sparing surgery. Uterus-sparing resection of adenomyosis is an investigational approach that can be considered in individuals with extensive adenomyosis who are actively pursuing pregnancy. The disadvantage of this approach is that even when performed by expert surgeons, there is a risk of uterine rupture in a future pregnancy. This is a highly skilled surgery and should only be carried out by someone who has proven experience of this procedure.
Treatments that can ease the symptoms of adenomyosis include:
Pain medicines, such as NSAIDs (Ibuprofen, Ponstan, Difene)
Oral contraceptive pills
GnRHa drugs (brand names: Decapeptyl, Zoladex, Synarel), which cause the ovaries to stop making the hormones estrogen and progesterone. There are side effects similar to menopause with this treatment.
Tranexamic Acid (Cyclokapron) is used to reduce bleeding volume
Many treatments - including hysterectomy, endometrial ablation, or uterine artery embolization - are not suitable for those who want to become pregnant. People with adenomyosis need to discuss fertility and pregnancy with their gynaecologist or obstetrician and work with them to find other treatment options until after pregnancies and childbirth.
There is not a great deal of information available to those with adenomyosis symptoms, so if you are affected, I hope this blog is a useful starting point and can equip you to ask questions and have an informed discussion with your doctor and healthcare providers. You can also find further information and support via organisations that support endometriosis and pelvic pain.
Sources of further information and support:
Experiences on BBC video https://www.bbc.com/news/av/health-44851478