Breaking the silence on endometriosis

The photography and storytelling project "Endosilence. Breaking the Silent Struggle of Endometriosis" will run during Endometriosis Awareness Month in March 2025. —Photo: Gabriella Wyke

To learn more about endometriosis, the Express sought the expertise of Minto-Bain. As lead for women's advocacy with the T&T Medical Association, the gynaecologist who has worked in Trinidad for the past 20 years runs several projects geared towards raising awareness around female-related health issues. Endometriosis is not only one of the most common conditions that causes pain in women, it is also complex. And it affects different women in different ways, says Minto-Bain.

"Generally the pain is a severe period pain. It is mostly linked to periods - but not always. It can cause pain during sexual intercourse, or it can cause pain with the bladder and passing urine. It can cause bowel related problems and infertility - at least a quarter of women (maybe even higher) who come into fertility clinics have endometriosis," explains Minto-Bain.

"The severe period pain that accompanies endo is a monthly trauma, it wrecks people's work life, their sex life and their ability to have friendships and go out because once a month they are incapacitated. Some women have chronic pains all the time from endo."

Although it is incredibly common, endo is often stigmatised, people think of it as period pain and it's generally considered taboo to talk about women's bodies and blood.

Because we don't talk about it enough, people really struggle to get medical advice and a diagnosis, says Minto-Bain. She points to research which shows that it takes the average woman 11 years before she gets a diagnosis of endometriosis.

Endo affects women from the onset of their first period, through menopause and after, regardless of one's ethnic origins.

"Even when their periods have stopped a lot of women still have bladder and bowel problems linked with the scarring and inflammation that endo causes," said Minto-Bain.

With endometriosis, tissue that resembles the tissues that line the inside of the uterus or womb are found in other parts of the body including the tummy, the bladder, fallopian tubes, lungs, etc. But doctors still don't know what causes it or why these bits of tissue grow in the wrong places in some women, and not in others.

Minto-Bain surmises that it could be due to some defect of the immune system - but it remains a mystery.

Laparoscopy which is a surgical procedure used to examine the organs in the abdomen used to be considered the gold standard to diagnose endometriosis. But times have changed. Nowadays a gynaecologist who has a comprehensive patient history and understands what they're looking for can make a diagnosis of endo. Ultrasounds and MRI scans can also pick up the condition.

There is no cure for endometriosis, but there is treatment in the form of pain medicines, hormone treatment and key-hole surgery. When young women present in their late teens, early 20s with endo, gynecologists tend to recommend hormonal treatment, like the birth control pill to stop endo from getting worse. Endo is an inflammatory condition, a lot of women find relief from following an anti-inflammatory diet, many use different supplements - neither of those options have been shown to be particularly helpful if you look at research, says Minto-Bain.

She cautions women with endometriosis not to rush into surgery.

"The days of just taking everything out are long gone. If you take out the womb, you still have endometriosis generally, it's not curative for the vast majority of women and it's a huge undertaking," said Minto-Bain.

The earlier a woman or teen is diagnosed with endo, the sooner she can understand what's going on with her body and get treatment. The problem, says Minto-Bain, is that people come to the doctor too late and by then they may have a deeply set, chronically inflamed problem with lots of scar tissue.

If you are a woman or teengager suffering from severe period pain, Minto-Bain has this advice.

"If you have severe pain with your periods, do not accept that it's normal. It's not normal — it's a medical problem. Find a doctor who listens to you and considers endo as a diagnosis. Be aware of doctors who talk about surgery and hysterectomy right away, other treatments are available. And if you suspect that you have endo, read and learn as much as you can about it, there are many resources including the Trinidad and Tobago Endometriosis Association."

Minto-Bain is confident that the upcoming photography exhibition Endosilence. Breaking the Silent Struggle of Endometriosis, will empower women to speak out, reduce stigma, encourage open discussion and raise awareness.

By raising awareness of this condition, more women and girls will seek help sooner, rather than enduring years of suffering, stresses Minto-Bain.

Those wishing to take part in the photography exhibition Endosilence. Breaking the Silent Struggle of Endometriosis can send an email to TTendoproject@gmail.com.