Latia Lee’s right lung collapsed. After her emergency surgery, she was told that it was due to spontaneous pneumothorax (just a fluke). But it ended up happening again, which is when she began to research. She realised that both times her lung had collapsed, she was on the second day of her period. Googling the term “endometriosis“, she was in disbelief. All the symptoms matched, as this was what she had been suffering with for 23 years, without proper diagnosis.
For an Indian woman, when she was 20 years old, acute pain started during her periods. She talks about how she endured it because society around her expected her to. Ultimately after visits to multiple doctors, she was diagnosed with a stomach infection, appendicitis and the like.
After many such trips, a doctor suggested she get an ultrasound done and discovered she had endometriosis. This had caused a cyst on her right ovary, which was so large that it could endanger her life unless it was removed. She says that she felt like an alien was growing inside of her. Similarly, other Indian women too have silently had endometriosis for years on end.
What Is Endometriosis?
The instances mentioned above clearly illustrate how aggressive endometriosis can be in its worst-case scenario, ranging from lung collapse to cyst formation, with the need for surgeries. But what exactly is this condition?
Endometriosis occurs when the endometrium (the tissue that lines the inside of a woman’s uterus) grows outside the uterus. The tissue thickens, breaks apart and bleeds at the end of the menstrual cycle. But in contrast to a regular period, this blood has nowhere to go, which leads to surrounding areas becoming inflamed or swollen, resulting in scar tissue and lesions.
Basic Symptoms
Pain is the most common symptom, with women suffering from different kinds of unique pain. Endometriosis can also lead to women being unable to get pregnant. Stomach problems are also seen. Bleeding or spotting between menstrual periods occurs, although this can be caused by something other than endometriosis too.
Social Connotations And Misdiagnosis
The absence of period leaves in workplaces and institutions, propagation of myths regarding menstruation and lack of support from loved ones only exacerbates this monthly ordeal. Gender roles come into play when women who serve as caregivers in their households go ahead and do all sorts of chores while silently suffering every month.
In addition to these societal factors, when one suffers from a severe condition like endometriosis, it is hard even to imagine the sort of pain the woman goes through frequently. This pain only gets heightened during her menstrual cycle.
When pain becomes too severe, and the woman finally builds the courage to approach the doctor, even they fail to diagnose the patient accurately. Most times the condition is dismissed as severe cramping, without undertaking proper medical examinations to rule out endometriosis.
As a result, the woman ends up suffering for years on end, thinking that there is no cure for her immeasurable pain. It is a sad phenomenon that even today, after so much medical advancement, doctors do not look at endometriosis as one of their first diagnoses when a woman complains of acute pain.
Padma Lakshmi got diagnosed with endometriosis very late in life, which portrays that even if one has the best of privileges, they can still go undiagnosed. In conversation with People, she said, “I felt it was this really icky thing that I couldn’t share. I was so embarrassed about it, I would lie to my agent and say, ‘Oh I have a migraine’ and then the next month I’d say ‘I have the stomach flu’.”
It was only a year after her surgery when she realised that she could have been diagnosed much earlier and felt angry. She said, “Wait a minute, I lost a week of my life every month of every year since I was 13, because of this, and I could have had this operation at 20 rather than 36? I’m shocked that a health professional didn’t say, ‘This is weird. Your cramps are above and beyond what they should be’.”
She has since then co-founded the Endometriosis Foundation of America alongside her endometriosis specialist Tamer Seckin, M.D. to lend a helping hand to other women dealing with the condition.
Treatment
Treatment for endometriosis usually involves surgery, but as a first resort, doctors recommend trying conservative treatment approaches and only go for surgery if they don’t work. Several factors are considered before determining the best treatment, like age, the severity of symptoms and whether you want children or not.
Still, not all treatments work well for all women with endometriosis and endometriosis symptoms may return after the treatment is stopped. In the case of surgery, they can return as more time passes after the procedure.
Therefore, there is no official cure for endometriosis, but there are treatments that can help to decrease pain and conditions of infertility. These include hormone therapy, pain medications and surgical treatments for the pain related to endometriosis, and using in vitro fertilisation (IVF) for the infertility factor (if laparoscopy is unsuccessful).
The author is a part of the current batch of the #PeriodParGyan Writer’s Training Program