Having severe pain during your period is not normal

Ghanthimathi (right) and fellow endometriosis patient Leila Azura share their experience living with the chronic condition during the event. Photo: MyEndosis

The sad fact is that many women live in silence and pain because they don’t know what is normal and what isn’t when it comes to menstrual health, says Surita Mogan, founder and president of the Endometriosis Association of Malaysia (MyEndosis).

Endometriosis is an inflammatory condition that occurs when the endometrium – a layer of tissue that normally lines the inside of the uterus – grows outside the womb in other tissues or organs.

Common symptoms include chronic pelvic pain, period pain, pain during or after sexual activity, and infertility.

An endometriosis patient herself, Surita adds that: “A lack of awareness of endometriosis and social taboos surrounding the disease are the common factors associated with the delay in seeking treatment.”

Consultant obstetrician and gynaecologist Dr Imelda Balchin agrees, saying that: “Endometriosis affects one in 10 women during their reproductive years, yet not many are aware of what the condition entails and how it can be managed.

“Endometriosis is a chronic and painful disease, which can have debilitating effects on fertility and quality of life of patients during their prime and most productive years.

“Although the symptoms may vary in type and severity, the pain can be both physically and mentally exhausting, leaving patients feeling helpless and overwhelmed.”

She adds that studies have shown it can take up to 11 years for a patient suffering from pelvic pain to be diagnosed with endometriosis.

Therefore, it is important for women with symptoms suspicious of endometriosis not to suffer in silence and seek medical attention as early as possible.

A lonely battle

Endometriosis occurs when endometrial cells, which usually line the inner wall of the uterus, grow outside the uterus. — 123rf.com

Ghanthimathi Subramaniam, 47, has never known what it is like to have a painless period.

Ever since her first period at the age of 12, she has been experiencing severe pain every month during menstruation.

As a teen, her pain was such that she constantly fainted during sports at school when she was having her period.

However, everyone thought she was faking it to get out of physical education (PE) lessons and household chores, compounding her misery.

Finally, at the age of 17, her mother brought her to see a gynaecologist.

However, the doctor told her that her period pain was normal and only prescribed her a painkiller.

While the painkiller did help initially, she eventually developed an allergy to it.

Neither Indian nor Malay traditional medicines helped either.

Ghanthimathi battled with her pain in isolation until she was finally diagnosed with endometriosis at the age of 26.

Over the years, her condition has progressed and has had a severe impact on her quality of life.

She has also developed adenomyosis, where the endometrial cells grow within the uterine wall.

Consultant obstetrician and gynaecologist Dr Patricia Lim Su-Lyn is all too familiar with the underdiagnosis and undertreatment of endometriosis.

She has seen many patients like Ghanthimathi who, by the time they do eventually get diagnosed, already have stage 3 or 4 endometriosis.

“The aim in treating a woman suffering from endometriosis is to relieve pain, slow the growth of the endometrium-like tissue, improve or protect fertility, and prevent the disease from recurring, ” she says.

“There are effective treatment options for endometriosis that can range from hormonal therapies, which aim to control the development of endometrial tissues, to hysterectomies, i.e. removal of the uterus via surgery.

“It is important for patients to discuss with their obstetrician and gynaecologist a long-term management plan so that the condition does not worsen and recur, as well as to prevent more surgeries.”

She notes that up to half of female infertility cases is due to endometriosis and emphasises the need for early management of the condition to ensure that it doesn’t progress to such a severe stage.

At present, there is neither a known permanent cure for endometriosis nor a therapy that can prevent disease progression, but treatment options are available that can relieve the symptoms, slow down the progression and prevent its recurrence.

Starting a conversation

Surita, Dr Balchin, Ghanthimathi and Dr Lim were all speaking at the launch of the MyEndosis website, developed by the organisation and supported by Bayer Malaysia.

Says Surita: “Today, MyEndosis is taking its awareness-building efforts up a notch by launching the MyEndosis.org website to promote greater awareness of endometriosis.

“But not just among women – everyone should know about endometriosis.

“By starting a conversation about endometriosis, we can raise awareness, end the stigma and break down barriers around this disease.”

Bayer’s Pharmaceuticals Division for Singapore, Malaysia and Brunei country division head Dr Vincent Ruland says: “Many women living with endometriosis are living life to the fullest after being diagnosed because they are receiving the right treatment.

“Together, we can help end the silence on endometriosis.”