The war on endometriosis remains a marathon

Clara* knew it was time to suck it up and see the doctor when she was denied a promotion at work, leading to a resignation in protest.

She leaned back in her seat lamenting about how menstrual periods remained a key hindrance to women getting ahead in the corporate ladder, yet no one would talk about this kind of discrimination openly. Ever since her first period at 14 years, she had never experienced peace.

Her periods have always been spot on regular, every 22 days, bleeding for only three days, but three days of agony. She was a constant visitor to the sick bay, forcing the school nurse to stock injectable painkillers to manage her pain. Despite the severity of the pain, her periods have always been light.

Her cyclic companion remained by her side throughout university, with missed classes and sometimes even missed examinations because of periods. Clara literally normalised her pain, learning to self-medicate with a cocktail of painkillers to make the pain manageable. She would still miss at least a day of work on most cycles.

This affected how people viewed her at work. She refused to be silent about her suffering, making it public that she wasn’t ashamed of her menses, especially since this was beyond her control. She worked twice as hard as her peers to avoid being the dead weight on her team but clearly this wasn’t good enough for them.

At her performance appraisals two years ago, her immediate boss pointed out that she was always on sick-off, hence not quite able to handle the additional responsibilities a promotion would come with. Clara was livid! She knew her time was up in the organisation. She had to think outside the box.

The next year, Clara tendered her resignation and started her own business. It had been a rollercoaster for the past 12 months as Clara worked to get things off the ground. Finally, she could take a breather. Things were looking up and she had a modest staff of three, allowing her time out for self-care.

In many previous consultations, Clara had been told that her tests did not reveal any abnormality. Doctors suggested that she tries the combined oral contraceptive pills to help manage her period pains; but she held back, not wanting to take hormones with no clear diagnosis. She stuck to her painkillers. 

But now Clara sat across from me, acknowledging that things were getting out of hand. Both the pain and her premenstrual symptoms were getting worse. She complained of excessive bloating and constipation in the week preceding her menses, culminating in explosive diarrhoea once the periods came. She would be irritable and snappy, with poor sleep patterns. Thankfully, she did not experience low moods.

Her biggest concern was the diarrhoea. She would have multiple episodes, especially on the first day of the periods, that were extremely painful, aggravating the uterine pain from the period cramps. She could not be sure this was a new development over the past six months or so, and it seemed to be getting worse. Increase in dietary fiber and water consumption were not helping the constipation at all.

Additionally, sex was no longer pleasurable. It had gotten progressively painful to have sex, causing her to avoid it altogether. This was denying her pleasure, while straining her relationship; another reason for seeking care.

Clara’s last pelvic ultrasound was a year old and was noted to be essentially normal. Enquiring about Clara’s family history, she noted that no one else suffered such remarkable menstrual pain, but that fertility may have been an issue. She noted that most of her aunts had small families, even when they desired more. One had undergone assisted reproductive technologies in order to conceive.

Examining Clara opened a whole Pandora’s box. Clara’s abdomen was markedly tender. She had lived with the pain for so long she no longer recognised it away from the periods. A pelvic examination revealed deep pain, worse in the area behind her uterus.

The most important finding was in the digital rectal exam. My examining finger hit a point of intense pain that caused her to protest. There was obvious blood on the glove.

Endometriosis is one of the most disheartening diagnoses to give a patient. This is a condition where the endometrial tissue of the uterus, the innermost lining that is responsive to reproductive hormones, finds its way out of the uterus and grows outside, attached to other organs where it should not be.

In this abnormal position, the endometrial tissue continues to respond to hormones, cyclically thickening and shedding, resulting in bleeding into abdominal spaces that shouldn’t have blood in the first place. This triggers the body to respond by intense inflammation as the immune system attempts to mop up this blood. The endometriosis can happen anywhere in the pelvis, abdomen, intestines, liver, diaphragm, lungs (as was the case with media personality Njambi Koikai), and even the brain.

Clara had most of the classical symptoms. There was no doubt that the pain she felt and the bleeding came from an endometriotic nodule in her rectum, most likely extending to the posterior part of her uterus. This explained the constipation, diarrhoea and dyspareunia (pain during sex) that she had pointed out.

I sent Clara for a pelvic ultrasound by an experienced endometriosis specialist, Dr Charles Muriuki. The scan done immediately confirmed what we had suspected. Additionally, she also had features of adenomyosis, which is infiltration of the endometrial issue into the muscle wall of the uterus. Clara went through a wave of emotions, following the confirmation of the diagnosis. It will take a bit of time for her to settle into that space before we are able to take it to the next level.

Clara needs laparascopic surgery to explore the extent of the disease and remove the endometriotic nodules in order to relieve her of the disease burden, relieve pain and preserve fertility. She will still require medication on and off, but hopefully, the treatment will improve her quality of life.

Clara is still quite young and this means that she remains at risk of relapse of symptoms or development of new symptoms. Endometriosis is a chronic disease, needing long-term care. As we plan for our social health insurance coverage, may we not lose sight of this!

Dr Bosire is an obstetrician/ gynaecologist