Embracing my Journey as an Endo Warrior

I have struggled with excruciating menstrual periods since I was a teenager. It’s the kind of pain that pain medications don’t even begin to soothe. I have also spent the last eight years consulting numerous doctors because of my unexplained infertility. I did not realize that the two were related and that so many women are affected like me. I was diagnosed with endometriosis in July 2020 after so many years of wondering what was wrong with me. Studies show that endo can be found in 50 percent of infertile women. My initial reaction was the odd mixture of shock and relief. Because I had been struggling and praying over my failure to have a child, it was a relief to finally put a name to my pain. My initial response quickly turned into anger.

So many questions went through my mind, and I even tried to remember some wrong I might have done to deserve this diagnosis. Then came the tears and a lot of feeling sorry for myself mixed in with a good measure of heart-wrenching emotional pain.

After calming myself down, I grabbed my phone to google the terms that the doctor had tried to explain to me over and over again using diagrams earlier in the day. Over a series of visits, the doctor did his best to explain my options. One visit still stands out to me because I remember feeling so alone and crying nonstop for 30 minutes. It didn’t help that my husband was out of town for work.Getting a diagnosis can be a double-edged sword. I had initially felt relieved that finally I could move forward, but it was not easy. Receiving that diagnosis broke my heart. There is nothing like being told ‘officially’ that there is something wrong with you.

Feeling like you are less of a woman…

Being reminded of the fact that the one thing that other women work hard to prevent every month is the one thing you yearn for more than anything in the world. I look back and picture myself at 24 years, a young bride, hopelessly in love yet unaware and unprepared for the pain that I was going to endure. As the firstborn, I ordained myself as deputy parent to my siblings. I have always loved children, and I was looking forward to having a football team of children. Unfortunately, it has not been so.

It has been seven months since that diagnosis, and I’m still raw, but I am coping. This year, I turn 36. I know there is nothing particularly special about that number, but it is monumental to me as I thank God for life and endometriosis! Yes, you read right. I am thankful for the disease endometriosis. Hereafter, I will at times refer to endometriosis as endo.

Some might be wondering what endometriosis is. It is an incurable gynecological condition that occurs when tissue normally found within the uterus grows in other areas of the body. This tissue thickens, and in response to hormones each month, breaks down and bleeds during menstruation, usually causing severe pain. Approximately 6 – 10 percent of women of reproductive age worldwide have endometriosis. Most women go undiagnosed. I will not bore you with the symptoms and complications that endo brings along with it. I’ll just tell you this: it is extremely painful!

As a Christian African woman, I know full well that issues of sexuality, infertility, and female reproductive health are not well discussed. They are considered taboo topics that you cannot just bring up for discussion in families, communities or churches. My advice is let’s talk and let’s engage about such issues in open dialogue.

That couple that has been married for several years and has no children probably spends sleepless nights thinking about how they can afford IVF. That lady in your neighborhood is not only suffering through physical pain but must also endure the emotional pain of yearning for a child of her own to hold.

Individuals struggling with infertility and endo usually suffer in silence with no one willing to step into that place of pain and just hold their hand. As women going through infertility, we are in need of friends who care and in-laws who do not look down upon us and blame us for the “curse” we seem to bring to the family. I am so grateful for the people that God has placed in my life. I feel overwhelmed with love and support. Sadly, this cannot be said for everyone who suffers from endo or infertility. Let me share with you some of the things that my family and friends have done to help:

  • Listen to the person cry or yell. Be wise during this time and know what not to say, for example ‘just relax,’ ‘you can always do IVF,’ ‘you can always adopt,’ ‘you are so lucky not to have children,’ ‘at least it’s not cancer.’ When in doubt, just don’t say anything. I have friends who just cry along with me when I cry and that is helpful.
  • Listen to the person talk and offer your help. I have a friend who has offered to be a surrogate mom if I ever need one, and that really touched me to think someone is bothered about my situation to that extent. Four friends separately have offered us money for IVF if needed and family and friends have shared their children with us and opened their homes. Some have shared in support groups how family doesn’t want them near their kids because they are infertile. In the African culture, there is talk that a barren woman will bring umyama emulini or kusvibisa dzinza (a curse on the family). For those that open their homes, shared their pregnancy or parenting journey and share their children with us in various ways, thank you, ngiyabonga kakhulu, ndinotenda!
  • Offer to attend difficult appointments with them. It helps not be alone in a waiting room to get a result or even when getting a routine checkup. Someone to hold your hand helps relieve the pressure and fear of the unknown.
  • Offer to be an exercise buddy as some treatments may require them to be a certain weight, or be with them in whatever they like to do that makes them happy. Be their accountability partner if they will let you.
  • Listen to them explain the pain they are going through, and ask them what they need to alleviate their pain. Don’t downplay their experience with verbalizing or acting like they could be pretending. Some statements like anozviitisa, mukadzi mukuru kutorara (she is pretending; a grown woman should not be lying in bed because of period pains) or uyazensisa, wayesiyangaphi usetshona elele emzini wabantu (she is pretending; why is she married if all she wants to do is spend the day sleeping at her in-laws). These statements are not helpful to the cause. You may not say it to their face all the time, but they can tell that they don’t have your support in their struggle.
  • Research about the condition so that you can be more supportive. I have friends who at times are way ahead of me in terms of knowing the latest diet, medicines or therapy that can help ease my pain, and yet they don’t suffer from endo. My husband surprised me late last year by suggesting teas and heat patches he had seen on Instagram which have since become very helpful to my menstrual cycle. It just goes to show when I speak of my pain, he hears me, sympathizes and always looks for ways to help me.

Advice to Myself and my Sisters Suffering from Endo and Infertility

God Cares and Loves You!

You may be at a point where you seriously doubt the above statement, but He surely does care and love you to bits. Let me shares a few scriptures that I love, claim, and pray over my life:

  • My all-time favourite is Luke 1:37 – “For with God nothing will be impossible” (NIV). I cling to this promise and I trust God in his time.
  • Lamentations 3:32– “Though he brings grief, he will show compassion, so great is his unfailing love” (NIV). I know the Lord is faithful won’t forsake me even in my hardest season!
  • 1 Corinthians 10:13– “No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it” (NIV). I know this trial isn’t the end of my story. As gold is refined, I shall be as pure as gold!
  • James 1:2-5– “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you” (NIV).
  • Genesis 25:21– “Isaac prayed to the LORD on behalf of his wife, because she was childless. The LORD answered his prayer, and his wife Rebekah became pregnant” (NIV). This text reminds me that husbands are also going through the most and often need support and prayers even though they may not reach out when hurting.
  • Psalm 113:9– “He settles the childless woman in her home as a happy mother of children. Praise the LORD” (NIV).
  • Hebrews 11:11– “And by faith even Sarah, who was past childbearing age, was enabled to bear children because she considered him faithful who had made the promise” (NIV).
  • Enjoy your marriage.

Life is not a rehearsal or a drama. It’s real and it’s yours to enjoy or to loathe. Enjoy your marriage and do not just endure it. Marriage is a beautiful institution that needs you to engage all your faculties to enjoy with intentionality. Infertility does affect couples negatively as emotions are very high during this time. As women, we want to talk and weep about how we are feeling, but our husbands on the other hand may not be able to talk about the pain and hurt they go through. Learn and understand how to communicate as a couple to be open about the journey, the joys and pains of what you may be feeling, and feel free to be vulnerable without letting your childlessness rob you of your joy.

Do not stop being loving, romantic and kind to each other as that is what brought you together initially. Remember that being together and being in love is important while you wait for a child so that when the child comes, the environment is conducive for a healthy and happy home.

You are special. You are enough!

  • Deal with your mental health and guard it jealously. Treat yourself as royalty. You are special. Tell yourself that you matter and that though you may be going through a tough time, you will not let it define you.
  • Stop to smell the roses. Feed your mind with all the positiveness and have an overload if you must. Enjoy and strive to do those things that make you the happiest.
  • If you are overwhelmed, pause, take a mental step back and pray. Talk to a friend or family member, speak to a trusted Christian counsellor or pastor to get help.
  • Don’t let infertility or endo limit you and your drive; work on your dreams and career goals. Study, read books and travel the world. Start that business that you have always wanted to start.

Your health is your wealth!

  • Seek help early and be patient to stick through the investigations and processes involved to ascertain what is causing you pai We often say what we don’t know doesn’t hurt us, but for our bodies it does. As much as it is painful to be told there is a hole in your uterus, the earlier you know, the better your chance of a viable solution. Once diagnosed, seek help on what medicines you will take and stick to the treatment. Taking medication for a long time gets tiring, but keep doing what you need to because it is worth it.
  • Food is medicine to our bodies. Let’s watch what we eat and how we eat it. One of my favourite celebs Tia Mowry speaks on her journey with endometriosis, in particular her deliberate and concerted effort on diet. Making good diet decisions will yield great results.
  • Exercise and keep fit when you are sure the activity will not aggravate any pain on your body.
  • Listen to your body and take care of it with tender, loving care. You do have one and there isn’t a spare in some vault somewhere. Do not overwork your body and do not ignore symptoms and signs of unwellness you may experience.

A problem shared is half-solved they say, and I agree because writing this article has brought healing. Thank you for reading through to learn about the battle I and so many women fight every single day.

Written by Endo Warrior: Coreen Madanha  

…as edited by Nompilo Zibanayi

Article first published in https://theweightshecarries.com/

Photos courtesy [Assured Busangabanye | Tanadu Atelier]

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