Adenomyosis: Patient and expert perspectives

Painful, heavy periods, pelvic pain, fertility issues: Any of these could point toward a diagnosis of adenomyosis. Less widely recognized than endometriosis and uterine fibroids, which often cause similar symptoms, adenomyosis could affect up to one third of women aged 18-30. Getting a diagnosis can be tricky, so Medical News Today spoke to experts and to 32-year-old Kate, who lives with the condition, to find out more about it.

“I got my first period when I was 14. […] [F]rom the first one it was just very heavy. The pain wasn’t too intense. I woke up one night, I had one of those high beds with a ladder, so I couldn’t get down with my legs crossed. By the time I got to the bathroom, it was a trail of devastation.”

The quote above is from Kate*, a 32-year-old cisgender woman. Her experience of heavy periods during her teenage years is one many other women and girls will recognize.

It was not until Kate was 19 and at university that she finally realized that her bleeding was not normal, and worked up the confidence to consult a doctor. It was a further 5 years before she received a diagnosis that would explain her extreme menstrual bleeding — adenomyosis.

A little-known condition

Adenomyosis is a benign — meaning, non-cancerous — condition. It is very difficult to determine the number of people who have it as many may not be aware they have a gynecological condition. However, one study found adenomyosis was present in 34% of cisgender women aged 18-30.

Symptoms include:

  • heavy periods, or abnormal uterine bleeding (AUB)
  • painful or irregular periods
  • premenstrual pelvic pain and feelings of heaviness or discomfort in the pelvis
  • issues with fertility
  • pain during sexual intercourse or bowel movements (less common).

Prof. Andrew Horne, professor of gynecology at the University of Edinburgh, United Kingdom, and spokesperson for the U.K. Royal College of Obstetricians and Gynaecologists (RCOG), explained the condition for Medical News Today:

“Adenomyosis occurs when the cells that make up the lining of the womb are found in the muscular wall of the womb. Symptoms include heavy and/or painful periods, as well as pelvic pain and discomfort. A third of people with adenomyosis do not experience any symptoms, but those who do can have symptoms that range from mild to severe, and adenomyosis can severely impact a woman’s quality of life.”

Doctors first described adenomyosis in a 1947 study, having examined almost 2,000 uteruses following hysterectomy, the surgical removal of the uterus. Until recently, histological examination of a uterus was the only way of diagnosing adenomyosis.

However, improvements in imaging technology mean that doctors can now detect adenomyosis by ultrasound or magnetic resonance imaging (MRI) scans. So healthcare workers can now consider the condition as a possible cause of abnormal uterine bleeding, menstrual pain, or fertility issues in a younger population.

Issues with diagnosis

In the past, adenomyosis could only be diagnosed after a hysterectomy, a procedure that is often performed to cure AUB in women during perimenopause. So doctors thought the condition was confined to women coming to the end of their reproductive years, particularly those who had undergone several pregnancies or uterine surgery, such as cesarean delivery.

Even with advances in imaging, diagnosing adenomyosis can be challenging, as other gynecological conditions, such as endometriosis and uterine fibroids, cause similar symptoms.

In addition, the conditions often occur together — a 2020 study found that almost half of women with adenomyosis also had uterine fibroids.

“Clinical diagnosis of adenomyosis is difficult, because of the non-specific nature of symptoms. Furthermore, until quite recently, the diagnosis of adenomyosis required the analysis of the uterus after a hysterectomy. However, recent advances in imaging techniques have had an impact on the detection of adenomyosis, and ultrasound and MRI are now commonly used diagnostic tools.”

– Prof. Andrew Horne

However, diagnosis is still not always straightforward, as Dr. Sherry A. Ross, OB-GYN and women’s health expert at Providence Saint John’s Health Center in Santa Monica, CA, told MNT.

“Painful periods with heavy and irregular bleeding can be seen in a number of other medical conditions, so putting all the pieces together can be challenging for healthcare providers. […] Adenomyosis can also coexist with fibroids and endometriosis,” Dr. Ross explained.

“Many health experts still have disagreements on defining and classifying the imaging and pathology caused by adenomyosis,” she continued.

Trial and error treatments

The treatments for adenomyosis are similar to those offered for other menstrual conditions, as Dr. Ross outlined: “The best treatment options for someone with adenomyosis who still wants to conceive will depend on the symptoms she is experiencing. Nonsteroidal anti-inflammatory medication [NSAIDs] will be helpful for menstrual cramps and pelvic pain. The birth control pill and progesterone IUD will control heavy and irregular periods and menstrual cramps.”

Hormonal treatments may also have other benefits.

“Long-term hormonal contraception prevents [the] proliferation of endometrial[-like] tissue, which makes it less likely for endometrial tissue to invade the myometrium [muscular wall of the uterus],” said Dr. G. Thomas Ruiz, OB-GYN lead at MemorialCare Orange Coast Medical Center in Fountain Valley, CA.

When Kate first consulted a doctor, she was offered the birth-control pill as a way to control the bleeding and pain. However, because she has migraine, she avoided the combined contraceptive pill. In people who experience severe migraine, the combined pill may increase the risk of ischemic stroke.

“I could only have the progesterone-only pill, so I tried two different ones of those, but that didn’t agree with me at all — I just bled all the time,” she told us.

She subsequently tried several other treatments — mefenamic acid for the pain, tranexamic acid for bleeding, the Mirena (hormonal) IUD — none of which made a difference to her symptoms for long.

And she still did not know the cause of the problem.

Persistence paid off

At 23, Kate finally found a primary care physician who had a gynecology qualification: “She was brilliant. She got me straight up to a hospital for scans.”

Although the first scan did not find anything, the second, at Birmingham Women’s Hospital, made the diagnosis: “Straightaway she said ‘Oh, there you go, adenomyosis — you can see it’.”

“The diagnosis was when I was about 23 or 24, so it was about 4 or 5 years of pushing and trial and error,” Kate added. “If I’d known more about doctors before I started going, I’d have maybe saved myself a little time.”

Following her diagnosis, Kate was referred to a consultant, who prescribed the combination birth control pill, which was much more successful at first, but the effects did not last.

Finally, she tried the transdermal hormone patch — “that was brilliant,” she told us.

Have a baby?

“A few [primary care physicians] and a consultant at the hospital had suggested that I consider having children as that might help. […] I was, like, 25, and didn’t want children at that time,” Kate recounted.

This is common advice, so MNT asked experts for their views.

“Some women feel [fewer] symptoms from adenomyosis after having a baby while others do not. Everyone with adenomyosis has a different experience with the struggles of this elusive medical condition,” Dr. Ross noted.

Dr. Ruiz explained why having a baby can help some people with adenomyosis. “Pregnancy causes something called decidualization of endometrial tissue which makes endometrium less active, and therefore, [results in] decreased pain,” he said.

Fertility issues

However, because it affects the wall of the uterus, adenomyosis can also cause issues with fertility, so the advice to have a baby can be both unhelpful and distressing for some.

“Some research studies suggest that the condition appears to impact on fertility and can lead to an increased risk of miscarriage and premature birth. Anybody who has been diagnosed with adenomyosis and who is concerned about their fertility can talk to their [primary care physicians].”

– Prof. Andrew Horne

Kate was lucky. In her 20s, when she thought she did not want children, she considered a hysterectomy as the only sure way to cure her adenomyosis. Now 32, and pregnant with her first child, she is relieved she did not push hard for the operation.

“I was expecting it to be a really difficult journey to conceive and then sustain a pregnancy […] [but] we just caught straight away, which was wonderful. After being told for so long that it would be a difficult journey, it was quite a shock for it not to be. I’m now 6 months pregnant,” she told us

For some, the journey to pregnancy may not be as straightforward, as Dr. Ross explained.

“The uterine muscular and cellular changes associated with adenomyosis make the environment less favorable for fertility, implantation, […] and a term pregnancy. Women with adenomyosis who get pregnant have an increased risk of preterm labor, pre-eclampsia (hypertension of pregnancy), intrauterine infection, and cervical incompetency,” which means that the cervix is unable to retain the fetus.

Because of her condition, doctors are carefully monitoring Kate’s pregnancy and, so far, everything is going smoothly, but she is well aware of the issues others face.

“A lot of talk in the [adenomyosis] support groups is not around people who have struggled to conceive, but because there’s damage to the uterus, they’ve struggled to sustain a pregnancy. There’s quite a high rate of miscarriage, with a lot of people having two or three miscarriages before successfully having their children,” she said.

Impact on mental health

Adenomyosis and other gynecological conditions do not just have physical effects. They can also impact mental health, particularly if left untreated, as Prof. Horne highlighted:

“In our recent report on Gynaecology waiting lists Left for too long: understanding the scale and impact of gynaecology waiting lists, the RCOG called for more support to reduce waiting lists, so that women can access treatment sooner. We spoke to over 800 women with gynecological conditions and 80% said that their mental health had worsened due to waiting with painful symptoms.”

Be kind to yourself

Kate has found that trusting herself and listening to her body is most important: “If my body’s saying I need to rest or if I’m finding that having a lie down on the floor is needed, I will […] [I have stopped] trying to force myself to do too much, because I’m just making myself worse.”

Prof. Horne advised any person with excessive bleeding or pain during or between their periods to seek help.

“We would encourage women who are experiencing symptoms such as chronic pelvic pain or painful periods to speak to their [primary care physician] and ask to be referred to a gynecologist if they are still concerned. These symptoms may not indicate adenomyosis, but could be associated with another gynecological condition,” he pointed out.

Dr. Ross echoed this: “If you have persistent symptoms of painful periods, heavy and irregular bleeding, painful sex or infertility and don’t feel satisfied with your healthcare experience, be your best healthcare advocate and bring up the potential diagnosis of adenomyosis.”

Like with many other gynecological conditions, there is a lack of research and funding on adenomyosis, but campaign groups are working to remedy this.

“There is a lack of investment in research focused on women’s health, and we hope that the upcoming Women’s Health Strategy will prioritize more research on gynecological conditions such as adenomyosis, raising awareness of the symptoms and improving diagnoses and treatments of gynecological conditions,” Prof. Horne commented.

“No woman should be left to suffer with heavy periods, or untreated, or undiagnosed pelvic pain.”

– Prof. Andrew Horne

* We have changed this contributor’s name to protect her identity.

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