It has been recently reported that former Miss
Nigeria, Chief Adenike Oshinowo is now a
mother of twins (a boy and a girl) via
surrogacy. The twins are Nike’s biological children
but was carried and birthed by another woman. It
has also been alleged that the 47-year-old
enterpreneur who battles with a disease called
endometriosis, bought spérm from a spérm bank in
the US. Last week, she talked about her long term
association with the disease (endometriosis is 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.
Read what she says below: 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
(ménstrual). 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 chest 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.
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 séx Women with endometriosis do not want
to have séx 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-ménstrual 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 ménses 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.
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