By Divya Mascranghe
This is the final part of a two-part series on endometriosis. The writer explored the symptoms, diagnosis and management of endometriosis last Friday
For many women, a diagnosis of endometriosis also means coming to terms with possible fertility issues. As endometriosis affects the reproductive organs and sometimes causes infertility, stigma and shame are attached to the disease. Women also find it difficult to process a diagnosis of endometriosis due to the possibility of infertility. Society dictates that women have to get married and have a child, and places value on a woman based on her ability to bear children. Yet, her choice to bear children is only part of who she is.
Naomi (39) was misdiagnosed for two years before being diagnosed with stage four endometriosis. She said: “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.”
With regard to the stigma attached to endometriosis, Naomi said: “Especially in Sri Lankan culture, women are made to feel less of a person for not being able to conceive. But there is no shame, because so many women suffer with this and you’re not alone.”
For Vraie Balthazaar (36), a mother of two, marriage quickly became a point of discussion while having to come to terms with the disease. “Being told there is a possibility of infertility is scary, whether you’re married or not. It’s very much about children and society. It’s very scary,” she shared.
Nathali’s* (31) symptoms were ignored, until she was later misdiagnosed for polycystic ovarian syndrome (PCOS), and eventually diagnosed with endometriosis.
“Even though motherhood isn’t something I really ever wanted, it was still painful watching so many of my friends transition to motherhood and not understanding why it wasn’t happening for me. I felt guilty not being able to just feel happy for them. Now that I know it’s endometriosis, I’ve accepted it, but it does leave you feeling ‘defective’ as a woman.”
Support systems
Balthazaar says her endo changes her calendar and affects her work. “You have to have colleagues and comrades and friends who understand it.”
“Having a doctor who listens to your pain, and family and bosses who understand the struggle and are willing to cut you some slack when you fall ill, goes a long way in surviving endometriosis. But not everyone has this support system,” Minoli* (29) said.
Minoli went on to say that having to do day-to-day tasks and chores, especially related to work, as someone living with endometriosis causes much anxiety, especially when on one’s period or when having a flare up. “You’re worried if today is the day you pass out alone in pain somewhere, and wonder what will happen then.”
Having endometriosis also requires coming to terms with the fact that your body is fighting and you need to slow down. “For me that meant giving up intense physical exercise,” Minoli said.
Both Minoli and Nathali say that exercise and certain movements trigger a flare up of endometriosis that causes abdominal pain and severe fatigue afterwards.
Naomi believes that it’s also important that men are educated on endometriosis, because partners should understand what is going on, and not put extra pressure on a woman who is already feeling stressed.
The impact of dismissing symptoms
Meanwhile, Minoli said: “Because my pain was dismissed previously, I thought that it was all in my head. I remember feeling relieved when my doctor told me what was found during surgery. I finally knew my pain was real. I wasn’t crazy”
General practitioner Dr. Rashmira Balasuriya said: “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.”
She explained that a delay in diagnosis allows the disease to progress further and become more severe, and visiting a gynaecologist should be routine, especially if you are experiencing any gynaecological symptoms. Your marital status should not be the determining factor.
“Whether the final motive is to have a child or not, you (women) have to be happy and healthy,” Naomi shared.
Misdiagnosis and dismissing symptoms of those suffering from endometriosis can result in mental strain for women and worsening of the diseases. Consulting a gynaecologist who has experience in diagnosing and treating endometriosis is best.
Normalising pain among menstruating women, stigma and shame attached to conversations about sex and reproduction, misdiagnosis and dismissing symptoms by women, family members, and even some medical professionals can lead to delays in diagnosis. Such delays could lead to a progression of the disease.
Health services and support
If you suffer from endometriosis symptoms, it is recommended that you seek medical services. Some common symptoms according to the National Health Service (NHS) England include:
- 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 sick, constipation, diarrhoea, or blood in your urine or stool during your period
- Difficulty conceiving a baby
- Heavy periods, where you might use lots of pads or tampons, or bleed through to your clothes
For some women, endometriosis can have a big impact on their life and may sometimes lead to depression.
If you are diagnosed with endometriosis, know that you are not alone. The Colombo South Teaching Hospital in Kalubowila has a specialised unit for endometriosis. There are local support groups and organisations for endometriosis on social media such as the Endometriosis Association of Sri Lanka, Endometriosis Support and Awareness Foundation (ESAF) and private Facebook groups for women.
*Names changed to protect identity
(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)