I thought I was going to die’(endometriosis) – Nike Osinowo

Delectable and delightful, the former beauty queen, now 47, still radiates an aura of self-assurance, wittiness, vigor and vivacity that women several years younger would die for.

Decisively and convincingly, she speaks about her long-term association with endometriosis – a disorder that occurs when the endometrium (cells lining the uterus) grow in other areas of the body, causing excruciating pain.

Medical experts identify endometriosis as a significant factor in unexplained female infertility, chronic pelvic pain, and other gynaecological problems.

Oshinowo holds her audience spellbound with the story of her personal experience with this disorder during her reproductive years. One thing is certain; her relentless campaign against the pain of endometriosis is no fluke.

The goal, she points out, is to let women who feel the pain and trauma of this female health disorder know that they are not alone. From her perspective as someone with long-term experience of the malady, she puts a face to the disorder.

It is a deep, soul-searching account of an epic phase of her existence.

Excerpts:

I have lived with endometriosis since the age of 13.  I was sent to boarding school in England when I was seven. I went to prep school. It was during the first few days in secondary school that I began my periods (menstrual). They called the ambulance and I was hospitalized for 10 days because the pain started and wouldn’t stop.

I thought I was going to die, the first two days, I was in the infirmary with the matron and she kept saying, ‘O Adenike! We understand that you miss home, we understand that it’s a rite of passage, we understand it is difficult for you, we understand that every girl must go through it, but just bear it’.

I’m telling this story because it happened in England and, supposedly, the white people, who knew best, yet had no idea what was wrong with me. Every female student they had dealt with had had a normal period and coped with it, so they could not understand why I was dramatizing. They thought I just wanted attention. The pain was so intense I passed out. They called the ambulance and I was hospitalized. The challenge was now to get me to stop bleeding.

Challenge

Living with endometriosis is a challenge. When you see your doctor, your doctor just tries to treat the symptoms and assumes the pain revolves around your menstrual cycle. But this is not so. This pain affects every single aspect of your life.

I, as Nike Oshinowo, have never had an examination without my period, I have never traveled without my period. There are so many things I have never done without my period. When I am very happy my period comes. When I’m depressed, my period is there. I learned to just cope with it.

I love the quote that women wear their pain like stilettos. That is what I have been doing.

At 40

Until I turned 40, Nigerians didn’t know I suffered from endometriosis .When I turned 40, I granted an interview and Nigerians understood why I never drank alcohol. You cannot be on medication and take alcohol. It was finally understood why I was so clean cut and into healthy living.

At last it was understood why if I come to your party, at 8pm I had to go home to bed and to take my pain killers; because when you live with endometriosis, you live with pain. I have a library in my home. It is a library about pain. I have so many books on pain cure.

Ignorance

It is extraordinary the effect that endometriosis has on your life especially if you are ignorant. Ignorance is of two types – knowingly or unknowingly. My mother, unknowingly, was ignorant, because nobody had educated her about endometriosis.

She had two daughters, one didn’t suffer every month, the other did, but my mother didn’t bother about it. She just figured the one that suffered would grow out of it, especially since the doctors just recommended pain killers.

Pain

I talk about this pain, now, so that mothers, when their young daughters are starting their periods for the first time, and it is traumatic, they will go and sit with the doctors, ask questions and have it checked out.

Mine was left so late in life in spite of the fact that I grew up in England. It was frightening. I wish I had someone to blame, I wish I could blame the doctors. I have had so many surgeries I have lost count. I remember when Michael Jackson died and they talked about a drug he had been taking and I exclaimed –’ oh yes, I have taken that drug!’ You try everything to make the pain go away, so all I know is that I would not want a child of mine to suffer endometriosis. No. The only way to make sure that does not happen is to educate as many as I can.

Understanding

Everyone understands what cancer is. People know how to check for breast cancer, and are aware that, for cervical cancer, you do a pap smear. But endometriosis is not that easy. There are symptoms mothers and fathers, nurses and aunts and other caregivers can watch out for so that there would be no needless suffering like I had. I am living with endometriosis. I was born with it and there is no cure.  Hopefully by the time I have menopause it will be better because once you stop menstruating, everything is over. Hopefully!

Have a baby

One ignorant doctor told me to try to have a baby because once you have a baby, the pain would all go away. I thought to myself that if I had a gun I would have shot that doctor, and I would have been locked away and there would be no one to give me pain killers. The reason for that relief generally is that when you are pregnant, you don’t have periods and a long gap of not menstruating actually abates the symptoms of endometriosis.

Challenge

But the challenge is the pregnancy.How do I get pregnant to get to that stage? It was wonderful meeting Dr. Abayomi Ajayi (of Nordica Fertility Centre, Lagos), who is so passionate and knows so much about the disease, in spite of the fact that he is a man and he is so willing to share his knowledge. Whatever I can do to stop a girl of 12, 13 or 14 not to suffer the pain of endometriosis, until she experiences menopause, I am willing to do. I’m working for endometriosis.

Menopause

I’m 47, and I’m looking forward to

menopause. Menopause is slowly creeping up on me. People like us look forward to it because it gives us a breather. I have finally learned how to cope with the pain, how to live with endometriosis, and to manage the disease. It takes up a huge amount of my time and life.  One pastor once said to me that I have to reject it.

He told me not to say “my endometriosis” but to refer to it just as a disease because it is, really, a disease. He said I must reject it.  Well, I rejected it, but it didn’t go away. It is still here and I’m learning to cope with it. I hope those coming after me won’t have to cope the way I am. I expect they will have more relief because they would have been educated.

Symptoms

The number one symptom is severe pain, pain that you cannot imagine. That pain during periods is known as dysmenorrhea. A lot of people confuse dysmenorrhea with endometriosis. Dysmenorrhea could be a symptom of lots of things, but anyone experiencing painful periods should see a doctor.

Unfortunately, endometriosis cannot be diagnosed without putting you to sleep and doing a laparoscopy to see what is going on. There are many well equipped clinics around and it is easy to diagnose because our doctors are so well versed in laparotomy. It is not normal to have pain during periods.

Sister

When my sister started her periods,I was ready to help her. We are a close knit family. We love each other. She started in the evening and I thought to myself, this girl smiling doesn’t know what is coming. I thought everyone suffered like that, that every woman suffered like I suffered. I didn’t know it could be different for other women.  But, she had dinner and went to sleep. I could never eat. Sleep?

Forget it. Pain killers were my best friend. I simply knocked myself out, but couldn’t afford to sleep carelessly. I stayed up all night so that I could be a good sister when the pain came, to tell her I had the medicine and that she wasn’t going to die. But, nothing! She woke up in the morning, still nothing. By the third day, I was so envious about my sister. In fact, my first experience of envy was towards my own sister because she had pain-free periods. Till today I do not understand why.

Why me?

There is this thing about endometriosis

that it is a disease not truly understood because we haven’t done enough research. Where does it come from? How you get it is still not thoroughly understood because enough awareness has not been created. Unlike HIV/AIDS and cancer, a few years ago, there was no hope for a cure but now there is more awareness and people do not die of these disorders as before. But it is not the same about endometriosis.

This makes me wonder. Is it because it is a female thing? Is it because I’m a woman, considered a 2nd class citizen in the world?  Must I suffer because I’m a woman? You wonder and ponder over these things. I need answers to these questions. Why do I have it and my sister doesn’t? Is it hereditary? Someone should tell me. If I give birth to a girl, would she have endometriosis? This is why we need serious awareness.

My sister doesn’t have this disorder. My mother doesn’t have it, but then, I look at my mother’s siblings and I discovered I have a sister that doesn’t have a child. I wonder if she suffered from endometriosis. I have a distant male cousin that doesn’t have a child. Does it also affect boys? There are so many unanswered questions. If I lock you up in a room for a month, you won’t finish answering my questions. I have so many questions. We live in a country in which we believe in symptoms more than the causes.

No to sex

Women with endometriosis do not want to have sex because it’s painful. It is very, very painful. So you do not want to have intercourse once and it is painful, you’ll not want to go there. It’s not something you are going to look forward to. I have read books on this. And even when you try to forget the fact that you do not want to, half the time you are bleeding. You are either bleeding, or you do not want.

So, on the average, my friends’ periods last about 5 days, mine, if I’m lucky, lasts 7-10 days and if I’m super, duper lucky, lasts less than seven days; if I have eaten what I should, and exercised constantly, it’s not so bad. Exercise works. If you look at a girl’s menstrual cycle, 26-27 days, remove the 10 days she’s been menstruating and remove the days she doesn’t want, when she has pre-menstrual tension.

When every part of you is sore, on those days, you are not going to want, and even on the remaining five or so days that you are ‘OK, you are not going to want to have intercourse because it is going to be painful. You just don’t want to. So you cannot have a proper relationship with a man.

Pain: Between menses and endometriosis

Sometimes it is difficult to tell the difference, that is why it is necessary to do tests. If all these symptoms are on, it is not the one you take analgesics.

The pain from intercourse occurs when there is the presence of endometrium. If diagnosed early and you interrupt the sequence, other things may not follow, can advise appropriately, infertility may follow, or told to have baby quickly, donor, or give appropriate advise.

See the doctor

If you have a daughter with pain, she would talk because she would think she is dying. I thought I was dying because I was ignorant. Go with her to see a doctor when there is pain. There are different tests. Doctors test with their hands, then they use the scan. I did that. The important thing is that when something goes wrong, pain is not normal, something is wrong, not to decide what to do, but, as a good mother, you take her to the hospital.

Breaking the silence

Endometriosis is as old as day but women do not talk, because they are embarrassed to talk about anything down there. What a woman is going to tell you is that she doesn’t like to sleep with her husband? To get a woman to start talking to you about her periods, even that will make you to be seen as a loudmouth. Even talking about her periods, it  is not easy to get a woman to start talking about it. But doctors are able to pick it up because they are infertile.

Women are expected to have children in these parts and, if they are incapable of that, they have to find out why.  Then they go to the doctor who traces it to endometriosis. Ultimately infertility would arise and they have to go to a fertility doctor.

Face of endometriosis

The face of endometriosis isn’t particularly glamorous. Even me, with my independent view, my laid-back attitude, it’s not easy. When I thought about it, I have a mother and family. I know what happened when I turned 40 and I talked about my endometriosis. I got thinking and I almost put it off. But I said no, this is time for action, we can’t keep postponing it. If they had postponed the research and awareness campaigns  into HIV/AIDS or cancer, there wouldn’t have been the breakthroughs we have today.

Knowledge is power, information is king

How do you get people to talk? It is awareness, awareness, awareness. The more I talk about it, no matter how embarrassing the more awareness I’m creating. Talking about it is embarrassing; I’m not immune to embarrassment, by the way. Before coming here, I took my shame, locked it up and put the key in my bag and said I would face you and tell the truth the way it is.

Endometriosis, a disease

A disease is something that is not supposed to be there, and that is what endometriosis is. You are not supposed to have endometrial tissue in your abdomen. Surgery removes it, but the moment you menstruate, the pain comes back.
My understanding is that I have a uterus, every woman does. Something lines it. Just like when you want to bake, you line your pan with baking paper.

That baking paper or lining is the endomentrial tissues. But mine isn’t just confined to my uterus. It’s in my fallopian tube, it’s everywhere. Everywhere this tissue is, when you menstruate, that tissue will be doing the same thing. And you feel pain. Anywhere that tissue is, it behaves as if it is in the uterus.

The purpose of menstruation is to shed the lining and come out. I know someone who has endometrial tissue in her gut. Even in the brain. When you menstruate, it also menstruates and you feel pain there. Menstruation is made to shed and come out.

I have traced it back to the Old Testament. The woman that wouldn’t stop bleeding and you wonder why?  So it has been since the beginning.