‘I Have Learnt To Live With Endometriosis’: A Woman Shares Her Experience

Tanvi*, a 26 year old corporate lawyer, had severe period cramps in late 2019, which were unbearable to the extent that she had a blackout in the shower due to the pain. She fainted but was one of the lucky ones to know the steps she should take afterwards as her parents are doctors.

Not a lot of women realise the underlying condition to symptoms such as pelvic pain and painful periods. According to the World Health Organisation, early suspicion of endometriosis is a key factor for early diagnosis, as endometriosis can often present symptoms that mimic other conditions and contribute to a diagnostic delay. Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally.

The Initial Diagnosis

Tanvi went to get a USG test done–an assessment to check the receptivity of the endometrium (the inner layer of the uterus). “The doctors after the test told me that it was a bad case of endometriosis as there was a lot of inflammation in my ovarian and uterine wall,” she said. “There was possibly internal bleeding as well. The uterine wall was so thick that it had almost conjoined with the ovarian wall.”

After the diagnosis, she understood why she was having severe pain during her periods. The medication and treatment she was given involved hormonal pills, which were basically contraceptive medicines to regulate her hormonal levels and reduce the thickening of the walls. “I also had to cut down on smoking,” she added.

Smoking can affect the development of endometriosis as it reduces the production of two vital hormones, oestrogen and progesterone. It also causes inflammation not only in the lungs, but all the body tissues.

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Living with Endometriosis

She says that after three years of her initial diagnosis, she has gotten used to the ailment. “It is not as bad as it used to be. It does not affect me on a daily basis. I don’t face any specific difficulties from the illness itself.”

But, the contraceptive pills have known side-effects that affect every user. “The medication itself causes extreme mood swings and anxiety that I face most of the time,” said Tanvi. She gets panic and anxiety attacks, there are tremors and shivering felt on her hands, and while working sometimes she would randomly start crying.

She added that early on in her endometriosis journey, sex would be extremely painful for her. “It was not a pleasant experience and was disturbing because sex is supposed to be pleasurable. I accepted my fate that life would mean unenjoyable sex.” However, she needed to find ways to navigate through it and had a partner who was supportive. “One can find alternatives that work for both of you,” she said. She has had to teach herself that penetration might be a painful affair, so other ways of finding pleasure might be suitable.

Personally, she has not faced any stigma attached to endometriosis, but has found other individuals who received backlash from their family and partners when they told they were on hormonal pills. There were times when these women did not want to have sex because of the pain, but their partners did not understand the complications they were facing.

She said that she has open discussions about endometriosis with her parents, who, due to their medical background, understand the sexual and pregnancy concerns related to the illness. Her friends do not exactly understand what endometriosis is, but they have been their loving selves, not letting Tanvi feel any different than before. The person she feels who is impacted the most by her diagnosis is her boyfriend who is flexible and understands the ups and downs she faces.

Her case seems to be the exception to the rule as a new survey by the Alliance of Endometriosis reveals that 90% of people with endometriosis feel disbelieved, dismissed or ignored by others at least monthly. More than 60% reported that they want validation that their endometriosis symptoms are not “normal” or “all in their head”, while more than 50% said that more detailed education and resources about how endometriosis affects patients could improve their conversations.

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Advice to other women

“Acceptance is most important,” said Tanvi. “One needs to accept that this is a bodily change and it will have a certain impact on other aspects of your life.”

She further highlighted that understanding the severity of the ailment is essential. “Women who have endometriosis are strong to go through painful periods, unpleasant sexual intercourses, and dealing with the bad side-effects of medications.”

Moreover, owning what card you have been dealt with because the ailment will never be managed entirely is the best way to handle the inner critic who wants to live a certain life and have a bodily standard. “You need to be kind during that process,” said Tanvi.

She added that she can almost not remember her life before endometriosis. “But I have learnt to live with it over the course of time. It is okay. It is just a different reality and I am okay with that.”

*Name changed upon request for confidentiality

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