Adenomyosis — heavy and painful periods

While many of the biological occurrence that happen to women are normal, different women still have different experiences. With much societal taboos and misconceptions, most still consider menstruation to be uncomfortable, embarrassing, and not to be discussed openly.

Lack of open discussions and proper education

The menstruation taboo extends to many parts of a woman’s physiology and sexuality, but it primarily involves the stigma around discussing and caring for menstrual needs.

The stigma also makes people feel like the topic of periods is uncomfortable, embarrassing, and even dangerous to discuss in some societies. This often leads women to use code words or (slang) to refer to periods.

Girls were then taught to keep their “little secrets” behind closed doors since they were young.

However, in-lieu with the Menstrual Hygiene Day last May 28, females all around the world were encouraged to speak up and stand up against the social stigma pertaining their menstrual cycle.

 In many parts of the world, poor menstrual hygiene is often caused by a lack of education on the issue, persisting taboos and stigma, limited access to hygienic menstrual products and many others. This often leads to the exclusion of women from social, domestic, and educational activities. 

Joanna Julan

Sharing her story, 27-year-old Joanna Julan revealed the treacherous experience she had to go through each month when her ‘monthtlies’ came to a visit. Diagnosed with adenomyosis and uterine fibroid, accompanied with symptomatic anaemia, the Kayan-Iban lass disclosed her struggles being a woman — one with difficulties. 

Joanna said that sometimes, people would question her condition. “They would say that other ladies have their periods too, but they can still come to class or work. Why can’t I? It bothered me a lot initially.”

According to Joanna, menstruation was not always a challenge for her. It was during her university days when she first experienced the pain of adenomyosis in 2014. “I was bleeding profusely. My jeans were soaked with blood. I had to run to the toilet to ease myself.” She thought that it was a normal occurrence for heavy-flow menstruation, and ignored the first sign.

 Months later, she experienced a full month of bleeding. “It made me light-headed and exhausted, so I decided to visit the hospital. There, I was diagnosed with uterine fibroids.” Joanna added that she was also given dosages of birth control pills to control the heavy flow and shrink the fibroid, but it did not help.

 As she struggled through with her period, it was not until the following year that she felt something amiss. “I felt dizzy. My brother and his wife brought me to the hospital for an intravenous drip. The medical personnel ran tests on me to check my haemoglobin level. It was only 5.6 when the normal should be around 12 to 13.”

“I was then referred to another hospital, near my brother’s place in Kuala Lumpur. The gynaecologist was shocked to know my haemoglobin level and said if I was a little late, I could have died,” she added.

Joanna was hospitalised for two nights. She was also given blood transfusions. “Back then, I was very pale, easily fatigued, and had heart palpitations.” After the diagnosis was made, it was revealed  that she had anaemia — as she had very low haemoglobin level which was equivalent to an old person’s heart. “I was told that I was weak. This was because my heart needed to work extra hard to pump blood throughout my whole body.”

 Joanna lamented how at her young age, her activities were limited. “I could not go hiking with friends. When I have my period, I have to stay at home. With the constant palpitations, I couldn’t even go up the stairs without feeling tired.”

Due to iron deficiency, Joanna also shared how her hair was dry and falls easily. “The most obvious effect that it had on me is how much weight I’ve gained due to the hormone pills. I received various negative comments regarding my weight and it upset me because they don’t understand my situation.”

With adenomyosis, Joanna would bleed even on days when it wasn’t time for her menses. But the one thing that gets her the most was the awful pain each time she starts to bleed. “Apart from my usual period pain, my left leg would also feel painful. I think it has something to do with the nerve related to my uterus.”

 Nowadays, Joanna said that she can handle it much better than before. Despite having to swallow tonnes of pills, she remained grateful. “I used to give birth to a ‘jellyfish’ each period.

The blood clot that came out felt like a big fist exiting me. But now, it’s much smaller. Maybe the size of a 50 sen coin.”

 Seven years after her first diagnosis, Joanna said that she continues to bleed heavily each month. “Sometimes I had to skip work to rest at home.” At one point, Joanna said that her condition was so severe to the point where it required her eating 16 pills in one go. “It was exhausting, and at times I would vomit.”

 Struggling with adenomyosis, Joanna had to take hormone pills for 21 days per month. “The other seven days — when I am on my period — I had to take painkillers and tranexamic acid to stop the heavy flow.”

Painkillers and tranexamic acid to help decrease blood flow.

 Asked whether she would consider removing her womb, Joanna said that since she is young and still unmarried, doctors have advised her against it. “However, it would be a good option in the future.”

 Going through the social stigma, Joanna said it was important to speak out about women’s issues. “We have to be aware of what’s going on with us women and our bodies. Every female goes through it and it should be considered something normal and not something to be ashamed of. Telling others about this can avoid body shaming too.”

 “Throughout the years, I had to explain to everyone about my condition, they did not seem to understand how it can be a burden to us. Some women have no to mild period pain while some have horrible ones, depending on the person,” said Joanna.

Societal taboo surrounding menstruation

Like Joanna, some women experience period shame despite it being a normal occurrence.

Speaking to Sarawak Women for Women Society (SWWS) digital marketing officer Grace Ong, even in today’s age and era, women are still belittled for what their bodies do to them. 

“Our society’s cultural taboos and stigma surrounding menstruation, along with the media’s negative portrayal of menstruation teaches women and young girls that menstruation is shameful or ‘gross’ and that it should be hidden from the public eye,” she said.

 The common misconception is that menstruation is impure or dirty, and the general society’s negative attitude towards the subject caused women to internalise menstruation as shameful.

 With the prevalence of false and harmful myths about menstruation in society, Grace lamented how it is dangerous to spread misinformation and fear surrounding menstruation. “Our society is left with a gap in knowledge on menstruation due to the lack of open discussions and proper menstrual education in schools.

 “A lack of awareness and knowledge on menstrual health and menstrual hygiene management will also negatively impact women’s health. When women are shamed for sharing their experiences, the experiences are being invalidated and made invisible,” said Grace.

 Nonetheless, it is empowering to learn more about our bodies. “Better awareness and understanding of how our body works will allow us to appreciate our body instead of seeing it as something fearful or shameful.”

 Understanding the biological process of menstruation, Grace said that women will then learn how to better care for their menstrual health. “Open discussions, which include people who do not menstruate, are also necessary to normalise periods and dismantle period taboos and stigma that are still present in our society.”

What is adenomyosis?

Dr Philip Kho.

According to Borneo Medical Hospital’s consultant obstetrics and gynaecologist Dr Philip Kho, adenomyosis is a condition where the lining of the womb grows into the muscle layer of the womb. “The cells of the lining of the womb are active in the muscle layer of the womb and will swell and bleed during each menstrual cycle.” Speaking of the cause, Dr Philip said it was related to hormones or previous womb surgery like caesarean section.


A common illness, adenomyosis affects up to 65 percent of women. “On average, about one in four women will have adenomyosis at any one time. It is most common in women between 40 to 50 years old who have had children.”

The blue pills are her birth control pill, while the white ones are the hormone pills she has to take.

Though adenomyosis can appear asymptomatic in one out of three women, it can also affect women severely by causing painful period and heavy bleeding to the point of being anaemic. Dr Philip also added that the pain can be very severe, which then requires painkiller injections.

Despite its severity, Dr Philip assured that adenomyosis is benign. “Most women will be prescribed painkillers to ease the severe pelvic cramp during menses and medication to stop or reduce her period. Birth control pills or other hormonal medication may help.”

What’s certain is that it is not a lifelong disease. “When a woman reaches menopause, the symptoms will usually resolve. If she still has severe symptoms after taking medication, she will be advised to remove her womb,” said Dr Philip.

Other related diagnosis menstruating women are diagnosed with

By Dr Philip Kho
  1. Endometriosis (condition where the lining of the womb is present outside the womb) — Women will normally have pelvic pain and irregular period. This can affect fertility.
  2. Fibroid (condition where there is an increase in the thickness in the muscle layer of the womb) — Women usually complain of pressure symptoms like urine frequency, pelvic mass or pain due to the enlarged womb. Her period can be heavier if the fibroid is inside the uterine cavity.
  3. Adenomyoma (condition where the fibroid has adenomyosis inside the fibroid) — Women will usually have pain during her menses.
  4. Endometrial polyp (condition where there is a small fleshy growth (polyp) inside the lining of the womb) — The women will usually complain of irregular menses or bleeding in between menses.