- Women share their personal accounts of misdiagnosis and delayed treatment
By Divya Mascranghe
Many menstruating women experience some pain and discomfort during their period, but how much pain is “normal”? When should a woman seek medical advice for menstrual pain or discomfort?
One of the causes for pain could be endometriosis, a common but overlooked gynaecological condition – one in 10 women globally suffer from this chronic illness. According to England’s National Health Service (NHS), endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
Endometriosis can affect women of any age, including teenagers, and it is a long-term condition that can have a significant impact on one’s life. However, there are treatments.
Symptoms of endometriosis
The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms. Some common symptoms of endometriosis are:
- Pain in your lower tummy or back (pelvic pain) – usually worse during your period
- Period pain that stops you doing your normal activities
- Pain during or after sex
- Pain when passing urine or stool during your period
- Feeling unwell, constipation, diarrhoea, or blood in your urine or stool during your period
- Difficulty conceiving a baby
You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through to your clothes
For some women, endometriosis can have a big impact on their life and may sometimes lead to depression
(Source: National Health Service, England)
“It can take many years for women to be diagnosed with endometriosis because there can be no physical signs. The only way to definitely confirm diagnosis is through a laparoscopic (keyhole) procedure. Endometriosis is often misdiagnosed because the symptoms can mimic so many other conditions that are often more easily treatable such as irritable bowel syndrome,” General Practitioner Dr. Rashmira Balasuriya said.
“The myth that period pain is normal and women should just deal with it is another common problem that causes dismissal of symptoms – both by patients and sometimes healthcare providers.”
Dr. Balasuriya said treatment is personalised according to the severity of the disease and the preference of the patient. Even though medical and surgical treatments can control the pain and other symptoms, the disease can recur. Dietary changes, yoga or simple exercise can help.
“There is no one-size-fits-all diet and it’s best to work with a nutritionist to identify foods that trigger a flare up.”
Treatments include pain medication and hormonal treatments such as the oral contraceptive pill and the intrauterine system (IUS). Dr. Balasuriya added that surgical treatment includes removal of the endometriosis tissue or surgically destroying the sites. Both diagnosis and surgical treatment are performed through a laparoscopy.
Delay in being diagnosed
Vraie Balthazaar (36) shared her story with endometriosis, saying: “I have a long history of very heavy periods and I would bleed for days. When I consulted gynaecologists in my early 20s, they told me I was okay and there was nothing wrong. Many years later, I consulted a doctor for a urinary tract infection that wasn’t going away. I then went to five or six gynaecologists and finally found out that I had endo. It was stage three. My doctor found large cysts (associated with endometriosis) and removed them through surgery.”
“No one understands the fatigue that comes with endometriosis and how tired you are. It is really difficult to explain to others because it is hidden. On the outside you are functional and okay-looking. But you are feeling like the end of the world every month,” Balthazaar said.
Soon after Balthazaar’s surgery, she had two consecutive pregnancies, but she still has endometriosis.
“The laparoscopy gave me some relief but the experiences of women are different. My endo is not as severe now as it was before, but I have a check-up every six months.”
Minoli* (29) said: “I’ve always had very painful periods and pain which would run down my thighs. I consulted a doctor for spotting and was diagnosed with endometriosis 10 years ago. When we sought a second opinion, I was told by the gynaecologist that ‘he can’t see anything wrong’. Yet, I suffered unbearable pain for years and also have rectal bleeding while menstruating.”
“About six years later, I visited a general physician for a suspected viral flu and underwent a multitude of tests for various illnesses. I eventually visited a gynaecologist, who re-diagnosed me with endometriosis. During the surgery my doctor also found bowel adhesions and removed them.”
Minoli’s endometriosis has recurred after laparoscopy and she continues treatment and pain management. “The pain is so severe I feel dizzy with numbness in my legs, and feel like my body is shutting down.”
Minoli went on to say that bowel movements are a nightmare, as they cause terrible, intense pain.
“It’s like a jolt of electricity, which pricks you with hooks on the way up,” Minoli said, adding that this wasn’t a symptom her family took seriously when she first started complaining about it.
People experience different symptoms
Nathali* (31) decided to seek medical advice because she couldn’t conceive and experienced spotting. She consulted multiple gynaecologists who dismissed her symptoms and was then misdiagnosed and treated for polycystic ovarian syndrome (PCOS). Since there was no improvement from treatment, she consulted a gynaecologist experienced in treating endometriosis who correctly diagnosed her. She also says she has pain during sex.
“Sex is not supposed to be painful every single time. Some pain the first few times, yes, but it’s not supposed to hurt all the time.”
“It is important for women to know that endo doesn’t always come with heavy bleeding or excruciating pain during periods. For me the worst time of the month is during ovulation. Painkillers and heating pads definitely make a difference.”
While many women do not come forward about experiencing pain during sex, it is a common symptom of endometriosis.
Naomi (39) says she had very severe pain during her period. “The pain was so bad I had to crawl from my bed to the washroom.” Similar to Minoli, some years later she started developing a low-grade fever. She also developed joint pains, while most of the pain that developed was mid-cycle.
Naomi also experienced bad pain during sex: “I was misdiagnosed for two years and by the time I was correctly diagnosed, I had stage four endometriosis. My doctor suspected that I had endo from my late teens.”
She added: “I have now undergone seven surgeries including a hysterectomy, but my endo is back. Although it is not as severe as it used to be.”
All four women complain of severe fatigue and delays in diagnosis, while also believing that bad abdominal pain was a normal part of life as a woman. The mothers of two of these women have also been diagnosed with endometriosis.
Awareness is important
According to Dr. Balasuriya, awareness is crucial. “More awareness is needed about how common endometriosis is – this will ensure that doctors keep this condition at the top of their differential diagnosis list.”
“A delay in diagnosis allows the disease to progress further and become more severe. Visiting a gynaecologist should be routine, especially if you are experiencing any gynaecological symptoms. Your marital status should not be the determining factor.”
She went on to recommend that all women visit their gynaecologist. “Endometriosis may not cause any symptoms at all so some women may not experience painful periods.”
*Names have been changed to protect the identity of the individuals
(The writer is an attorney-at-law and has a postgraduate diploma in gender and women’s studies from the University of Colombo. Her research interests are gender, women’s studies, and ethnicity)