March 16, 2019

What it’s really like to live with Endometriosis

What it’s really like to live with Endometriosis

Today, March 16, is another season for the Worldwide EndoMarch. Every year, on a Saturday in March, at the crack of dawn, hundreds of people from all walks of life gather at the City Mall, Onikan, Lagos Island, for the Lagos leg of the annual event aimed at breaking the silence around Endometriosis—a silent but growing health condition that predisposes women of reproductive age to ill health, infertility and severe periodic pains.

The early morning five-kilometre walk traditionally terminates at the Muri Okunola Park, on Victoria Island. It is put together by the Endometriosis Support Group of Nigeria, ESGN, in collaboration with Nordica Fertility Centre, Lagos, to raise public awareness and keep women on the alert about endometriosis.

When a woman with endometriosis  has her monthly period, the blood and tissue shed from the endometrial growth has no way of leaving the body, hence resulting in internal bleeding, inflammation that result in pain, adhesions and bowel problems.

Endometriosis is an incurable medical condition in which the lining of the uterus transplants itself outside of the uterus to the lining of the abdominal cavity and other organs-causing bloating, bleeding and pain. Doctors say the disorder causes damage and blockage to the Fallopian tubes by impeding the journey of the eggs down the Fallopian tube to the uterus, hence causing fertility challenges.

They add that the commonest symptom of endometriosis is pain—painful intercourse, painful menstruation, abdominal pain, back pain and emotional pain.

One in every 10 women is affected and about 176 million women worldwide have the disorder.  It is often extremely painful and can make having sex and going to the toilet agonizing. It causes painful periods and may lead to infertility problems.

Series of prominent, glamorous and some of the most beautiful women around have spoken publicly about their personal battles with the disorder. They include Hillary Clinton, Nike Oshinowo-Soleye, Padma Lakshmi, Whoopi Goldberg and dozens others.

They use their voices to speak bravely about their battles living with the condition. Their voices are important so that others can be aware and learn about it. To de-stigmatize and raise awareness about endometriosis, women affected keep talking about it.

It was quite a shock to several people when socialite, entrepreneur, role-model and former Miss Nigeria, Chief Adenike Oshinowo, first opened up to the public over a decade ago about her struggle with endometriosis.

Nike had just turned 40, when she granted the interview and disclosed her big secret. Over the years she has granted many more interviews and is now officially recognised as, the face of Endometriosis and Global Ambassador of the Endometriosis Support Group of Nigeria, ESGN. Her story was an eye opener, particularly in Nigeria.

She readily admitted she has lived with the condition since the age of 11. She lost count of how many surgeries she has had and is now looking forward to menopause. At 47 she became a mother to twins via an American surrogate.

“No doctor told me why I suffered so much because of endometriosis. I turned 50 recently and I’m looking forward to menopause. However, in spite of endometriosis, I have had an amazing life,” she asserted.  She is not alone.

Popular Nigerian performing artiste, songstress, rapper and song writer, Saeon Moruda (Oluwaseun Omolara Oni) also had her battle with endometriosis.

“I am a survivor of endometriosis, and I am currently dealing with it,” she stated. Recounting her journey through the disorder, Saeon noted that although her experience was relatively short, it is unforgettable.

Former US presidential candidate, and one-time US First Lady Hillary Clinton, who also served as the 67th Secretary of State, Senator for New York, had trouble conceiving her only child, Chelsea, born in 1980, due to endometriosis.

So did Padma Lakshmi, an Indian American author, actress, model and television presenter that was diagnosed at age 36.  Padma suffered with pain for more than 20 years and was told it was ‘all in her head’ before she was diagnosed with endometriosis. She had surgery when it was revealed she had two cysts on each of her ovaries and was also put on to birth control. She gave birth to her daughter, Krishna, in 2010.

Padma who is co-founder of the Endometriosis Foundation of America remarked: “I think, yes, endometriosis was definitely a major reason that my marriage failed, not intentionally, but, it’s weird to talk about your period all the time. It’s the least sexy thing in the world to do,” she said.

American comedian, actress, singer-songwriter, political activist, author and talk show host, Whoopi Goldberg, knew about her endometriosis for a long time, and was surprised to learn that so many women lacked knowledge about the condition.   She found out she had endometriosis in the 70’s and was given medication for the disease which worked.

She has one daughter, Alexandria, born in 1973. “You have to take whatever stigma people think that is there. You have to take it. It’s not male or female.  It has nothing to do with that. It has to do with, here’s a disease you don’t know about and you need to know about it. It’s that simple. It’s not rocket science.”

Lena Dunham, the “Girls” star announced she had endometriosis on Instagram. Soon after the post, Dunham was hospitalised to ruptured ovarian cyst. She wrote of her condition earlier in her 2014 memoir, Not That Kind Of Girl, describing the pain as feeling like “someone had poured a drop of vinegar inside of me, followed by a sprinkle of baking soda. It bubbled and fizzed and went where it would.”

Because of her endometriosis, Tia Mowry-Hardict underwent two surgeries and changed her lifestyle in order to conceive. “Despite my diagnosis, I still wanted to try and have a baby, but not being able to have kids was an immediate fear. It made me feel out of control.” The famous twin now has a, Cree.

“When all you know is pain, you don’t know that it is not normal, said Sarandon, who became aware of her condition in 1983, and has given advice for men on how they can help.

In 1982, Country star Dolly Parton was taken to the hospital to have a partial hysterectomy related to her endometriosis. She says she suffered from depression after learning she would not be able to have children. It was an awful time for me. Every day I thought, ‘I wish I had the nerve to kill myself.’”

Anna Friel, a British actress, was diagnosed with endometriosis when she was 28, after being rushed to hospital with a ruptured ovarian cyst. She says, “one doctor told me it would be very hard if I left trying for a baby beyond the age of 30, which at the time was far from an ideal situation.” She gave birth to daughter, Gracie, in 2005.

Known best for her role in Save The Last Dance, Elizabeth Oas spent many years in pain due to Endometriosis. She says: “I found myself working as a patient advocate, and thus created 5 years ago the internationally known blog talk radio show,”The Pelvic Messenger.”