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Beti Baiye: Of Endometriosis – The Pain & Living in the in-between Times

Beti Baiye

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As a teenager, Kedei suffered debilitating pain during her monthly periods and lived through years of her mother telling her, “Periods are always painful when you are young.” But as she grew older, the pain got steadily worse and each time she visited the hospital, she was misdiagnosed and sent home with painkillers that never really worked. Nobody was sympathetic, not even other women who generally thought she was exaggerating her pain. Kedei was in her 40s when a gynecologist finally diagnosed endometriosis. She had never heard of the disease, but was relieved that the pain was real and not ‘in her head’ as some thought.

The dictionary definition of endometriosis is when tissue similar to the uterine lining grows outside the uterus and other parts of the body and this can cause pain, organ dysfunction, internal bleeding and scaring.

Unfortunately, it presents as different symptoms in different women and so is hard to diagnose. One woman may have painful periods, another may have gastrointestinal symptoms and yet another may have a mash-up of all the symptoms. As a result, most woman are shuffled from doctor to doctor without anyone ever taking the time to put the pieces together.
Endometriosis is not a lifestyle disease, neither is it a disease you get later in life. It affects women in the prime of their life, sometimes hampering careers and relationships. This disease affects 1 in every 10 women globally and, according to Dr. Abayomi, founder of the Nordica fertility Centre, in Nigeria alone, about 40 percent of women and girls suffer from this condition. It is arguably the most common disease on the planet that most people have never heard of.

I suffered through years of crippling abdominal pain, finally agreeing to surgery when I was tired of propping myself up with painkillers. The operation was supposed to help ease my pain instead, it made things worse. Exactly a year later, I was back at the hospital for yet another procedure. Again, it failed to deliver what was promised. That’s when I took to research. I found out that my symptoms presented like endometriosis, but each time I spoke with a doctor, they brushed my concerns aside. Eventually, I realized that they did not know enough about it to help me. But this realisation did not come until after my third surgery.

It is only fitting that the Endometriosis Awareness week would occur at about the same time as we celebrate women all over the world. This year’s theme is, “It’s OK to Talk. Period”. In light of this, I am sharing below a depiction of my experience with pain and I hope this will encourage you to share yours. It is important that we begin to break the vicious cycle of misinformation, passed down for generations by our mothers and grandmothers that painful periods are normal and part of being a woman. If anyone you know is having these symptoms, don’t dismiss them, support them and help them find the answers. If you have these symptoms and no one is listening but you know something is wrong, don’t stop pushing. Be your own health advocate. Know your body. Be brave, be persistent and you can find the answers you need. Remember, “It is OK to Talk.”

Sometimes, he runs his fingers across my abdomen; not like a lover, no, never like a lover. Other times, he pummels my abdomen leaving me weak and gasping for breath but I can’t report him for domestic violence. They would think me mad.

Every month, he shows up in my sleep and without even a “by-your-leave” settles down to spend anything between ten to twelve days with me. He always wakes me up. I think he gets a morbid kind of pleasure out of this, at times forcing me awake with a jolt and other times, teasing me out of sleep, making me writhe with what if you were watching, you would mistake for ecstasy. I feel him on my lower back, my thigh, my knee, my stomach, touching me, always touching me when all I want is to be left alone.

Now and then, he keeps me from going to work. He never really comes out to ask me to stay – that would border on the controlling now, wouldn’t it? He makes me choose to stay home with him, snuggled up under the blankets sipping tea after tea after tea, chugging painkiller after painkiller, searching for relief that never comes.

We never talk about it, I mean, what’s there to say? We pretend like I am the dominant one, the one in control. My friends – the ones he lets me keep – think that I am the one calling the shots but him and I both know that it’s all him. He is the puppet master and I am the puppet. With him, I have learned to live in the in-between times – the times before he comes and after he leaves – where I try to find real life. But even there, his shadow hovers.
Three times before, I have tried to sever this ungodly bond that we share and each time, we have bonded tighter leaving me wishing that I had never even tried. In frustration, I went and spoke with an expert on these kind of relationships, asking him to tell me, honestly, where he thought we would end up. He stared at me for longer than I thought polite and then said, “ You must cut him off or he will one day be the death of you.”

So, I’m planning another bond-cutting ceremony, this time, grander than the other three put together and I believe that I will be fourth time lucky.

Until then, this is an ode, my ode to pain.

Beti is a writer, an editor and a Child Rights Advocate. In her free time, she indulges in  fiction writing and spoken word that explores human complexities. You can find her on Instagram betibaiye and twitter @betihez; on Child Advocacy matters, you can email her on [email protected].

29 Comments

  1. Halima

    March 17, 2017 at 3:40 pm

    I’m confused here. I get painful
    period most months. It happens on the first day and it can go on for 5 hours or less. I use pain killers and it goes away. I also experience abdominal pain during ovulation. Does this mean I have endometriosis? I thought it was normal.

    • Three Oscars

      March 17, 2017 at 4:16 pm

      Only an experienced Dr can properly diagnose endometriosis.
      This is to encourage anyone suffering from this disease:
      1. You can get pregnant.
      2. It goes quiet once conception occurs. My gyno thought I was making stories up when I informed her, as my scans, invasive as they were (other reasons), did not show any signs of endometriosis and her sisters. Only 8 years of hospital records show any proof. Proof gan, they had to go into the Archives.
      3. I did not do anything other than TRUSTING GOD, eating right (bye bye fried foods, especially meat and fish; started trying out healthier cooking oils; lots of veggies; binged on folate rich foods; stayed off cleaning chemicals: only used apple cider vinegar for wood-works…believe it…and for washing my hair, bleach + water for everything else needing cleaning…in moderation; be-friended essential oils; chinese medicine: accupuncture, accupressure, massage (1 tea: okay, at this point, my faith level was already increasing); i was shaaaaa eating right and detoxing…anywhere healthy combo foods is happeninf, that’s where you will find me; multivitamins; being happy; celebrating with other Moms and Moms-to-be; being happy with myself; read about lots of TTC stories on Nairaland and keyed into plenty success stories.
      What am I saying? Diagnosed with Endometriosiw and you want a child? Please try to keep your mind occupied. Married? Try and enjoy your man and let him enjoy you. Be happy. Once again, trust God. Opo oro o kagbon.

    • Beti

      March 17, 2017 at 9:15 pm

      Wise words. Thank you, Three Oscars. Maintaining a healthy lifestyle does help. I can testify to that.

    • Susan

      March 17, 2017 at 10:47 pm

      Hi Three Oscar.. I’m trying hard to get a hang on the whole detox and eating right thing. The very stuff that exarcerbate it are wat is easily available to consume… Will appreciate if u can detailed.. Thanks

    • Enitan

      March 17, 2017 at 6:16 pm

      No. Ovulation pain is a thing.

    • Enitan

      March 17, 2017 at 6:18 pm

      Halima, Ovulation pain is a thing.

    • Beti

      March 17, 2017 at 9:02 pm

      Hi Halima, like ‘Three Oscars’ said, only an experienced doctor can diagnose endometriosis. Please don’t be confused. The idea here is to let people know that period pain is not always just period pain, sometimes, there’s more to it. I encourage everyone to listen to their bodies, you will know when something isn’t right. I think you are just fine.

    • Three Oscars

      March 18, 2017 at 11:09 am

      Hi Susan,

      You are very right. I went organic. Believe it, during my moments of desperation, I moved back to Nigeria because of shoko, tete, gbure, ugu, efirin, etc. Bitter leaf soup (hand picked or bought, became a staple). I made different combination of efo into soup, when I’m craving swallow.
      Out of Nigeria, I tried the 1/2 lemon or lime in warm water drink, had a lot of cranberry juice (introduced kale (sieve and you mix its water with 100 % cranberry juice). If my food comes labelled, I read up on the ingredients. I also did some research on anti-oxidants which include ginger and garlic, to learn the benefits. And I boosted my meals with anti-oxidants.
      Endometriosis will occur when you have more oestrogen level than progesterone. A lot of our cleaning chemicals mimick oestrogen. There is plenty of information about this on the internet.
      I devoted my time reading up about the disease and how many women, the world over, overcame it naturally. I just kept reading and trying out different things already mentioned.
      Whatever you do, please do it with caution and don’t forget to keep living. Watch what you eat. Pay attention to your surrounding. Trust God (that’s far important).

    • Susan

      March 18, 2017 at 4:27 pm

      Thank you Three Oscars…

  2. Latoya

    March 17, 2017 at 4:00 pm

    Hie halima I don’t think your case is that of endometriosis. You first have to check if your periods are regular or irregular such that you have to check how long your periods last and if you get them every month. Again check the type of period such as your flow is it heavy or normal and if you get clots or if it is runny. But it is always good to go for check up and keep your doctor notified. Have a good day.

  3. Three Oscars

    March 17, 2017 at 4:19 pm

    Plenty typos but u sha get my point.

  4. Ivy

    March 17, 2017 at 4:19 pm

    Like mine, I feel the pain 5 days to my period, on my stomach, chest, sides, all over until 4 days after my period. I feel the most pain on the 2 nd and 3rd day and painkillers no longer work for me. Resigned myself to the pain.

    • Lucinda

      March 17, 2017 at 6:19 pm

      Don’t resign yourself to pain, see a specialist.

    • Beti

      March 17, 2017 at 9:10 pm

      So true Lucinda. That’s the way to go.

    • Beti

      March 17, 2017 at 9:07 pm

      Hi Ivy, i’m sorry about the pain you experience. I know how horrid it can be. Have you seen a doctor yet? I wish i could recommend one but i’ve had my share of unpleasant experiences. Please don’t resign yourself to the pain, find help.

  5. Olivia

    March 17, 2017 at 4:19 pm

    Hi Halima,

    No you don’t. That’s a regular cycle. If you read the article in full, endometriosis has more intense and painful symptoms beyond the regular 5-48 hour discomfort that comes with a regular period.
    Don’t let the article create fear in you. Thank you so much to the writer for this. To our sisters who have this, we know better now, and can support you better now.
    It can only get better.

    • Beti

      March 17, 2017 at 9:08 pm

      Thank you Olivia.

  6. ALLEGRA

    March 17, 2017 at 7:01 pm

    Ladies google – tranexamic acid, mefenamic acid and treat your body with respect.

    • Beti

      March 17, 2017 at 9:09 pm

      Thanks Allegra.

    • Busola

      March 17, 2017 at 10:24 pm

      Mefenamic acid is life!! Been on it for years now. Now, pain is history in my life.

    • eagle

      March 20, 2017 at 7:00 am

      I took it for four months. It worked at first, but stopped. It made me gain weight and took me back to square 1 ( menorrhagia). I think there are fake ones all over the market too.

  7. Cool

    March 17, 2017 at 7:54 pm

    Dear Writer, how did the doctor diagnoise endometriosis? My doctor asked me to do an ovary blood test to check the possibility of endometriosis. When the result came out, he told me there is a possibility of having it because the result showed a high level. He said the only way to know I have endometriosis is by surgery. He has told me to watch my painful periods for now. They have been excruciating in the last few months.

    • Beti

      March 17, 2017 at 9:49 pm

      Dear Cool, i believe the best way to diagnose endometriosis is by having a laparoscopy. It is a less invasive form of surgery. Please ask your doctor to explain further. I pray it all goes well.

  8. Na Wa

    March 17, 2017 at 9:30 pm

    So confusing. I had an endometrial biopsy done and was told I don’t have endometriosis.

    But….my periods are like punishment. Clots for Africa and the pain, indescribable. Literally paralyzes me. And it is so heavy I have to wear two pads and use the thick always.

    Booked a Dr’s appointment because this is not how to live.

    • Beti

      March 17, 2017 at 9:54 pm

      Wow…It sure is not the way to live. i’m happy you have booked a doctor’s appointment. I really do pray that it all goes well.

    • Shenaz

      March 18, 2017 at 2:17 pm

      Hi nawa, I think you should get a scan done to check for fibroids.

  9. Cool

    March 18, 2017 at 12:45 am

    Thanks sis @ Beti. I also experience blood clots. @ Na Wa, try tranexamic acid. It helps with heavy periods although sometimes I experience more pain after taking it. I think it has to do with my own hormones.

  10. Uzzy

    March 18, 2017 at 5:42 am

    Please I have a friend I love so much suffering for this and anytime is complains I wish I had super powers to take d pain away.. But what disturbs me most is she has been trying to get pregnant it’s not coming is dere any advice u can give me that can help her take in am so worried and am ready to support her through it all pls you guys should help me become a God mother. Thank you

  11. Claire

    March 19, 2017 at 12:30 pm

    Uzzy,I feel your friend’s pain as I too am in the same situation. I’m from the UK and I was told if I didn’t get pregnant after six months I may need IVF or assisted conception . However,due to all the medication I’ve needed in order to work suddenly I’m 42years old and too old for IVF. Endometriosis can cause infertility or problems conceiving so please advise your friend to seek medical advice . Sending you lots of love ❤

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