“Once I Overcame Fibroids, I Found Myself Again”- Oyinkan Ogundele

One issue women hardly talk about openly is Fibroid, yet 1 in 3 women suffer from  it.

Oyinkan Ogundele is changing the narrative of silence , as she is encouraging women to speak up, seek help and make them understand Fibroid is not a death sentence

She shares her inspiring story exclusively in this interview with Esther Ijewere

 

 My childhood was very memorable and fun. I grew up as a very loving, warm and compassionate child. Having lost my father when I was about 4 years old, (that’s a little over 36 years ago now), I heard so many wonderful stories about him. Everyday, I am reminded of how kind and benevolent he was. You know how it feels when random people hear my surname and ask if I am related to the late Dr. OluFunmilayo Osisanya and I would proudly reply: “oh, that’s my father.” What usually followed was praises of my Dad and how kind he was. This truly inspires me to live an impactful life. I remember on one occasion, someone informed me that my father helped restore his eyesight; and this was one of my father’s kind gestures towards him. The man was very excited to tell me about how my Dad had fixed his glaucoma and cataract for free. For some others, my father paid their children’s school fees, etc. He was always rendering acts of  kindness, especially to strangers. Because of my father’s legacy, I am inspired to help other people. I am also fortunate to have the most loving mother anyone can pray for. My mother is always helping others. My grandparents also had a house full of children whom they raised; many of whom were not their biological children. For these reasons, and with the combination of traits inherited from my closely knit family, helping others comes naturally to me.

I am a 3 time fibroid survivor. As a result of my experience in dealing with very aggressive fibroids, I developed a penchant for researching into women’s health. I am very passionate about advocating for women’s health matters as well as patients’ rights. I was initially reluctant to talk about my experience. This reluctance was borne out of fear – fear that I would keep growing them, fear that the fibroids may return, especially if they were an ‘affliction’ as this is one myth that is very commonly heard. However, after my 2nd year of finally becoming fibroid free, I summoned up courage to share my story with my friends and family via Instagram.

Subsequently, I started getting responses from people who had received my posts. Soon enough, I started getting referrals – people who wanted me to encourage their friends who had fibroids and had no support whatsoever.

In November 2019, I got invited to a fibroid awareness seminar where I shared my story with a room full of women. The number of ladies who connected with me, who took my number and also reached out to me after the seminar was phenomenal. I couldn’t believe the number of women who like I once did, were battling fibroids and its debilitating effects, but did not have the necessary support system which they desperately needed. Every fibroid sufferer deserves all the support they can get. You can not imagine my ordeal; whilst I did not have anyone to talk to about my symptoms, apart from the doctors who always seemed in a hurry to rush me out of their office/ consultation room. I was a very sorry sight.

July is recognized as the Fibroid awareness month and to commemorate this year’s celebration, I decided to formalize my desire to ensure that our collective voices are amplified louder than fibroids. According to Angela Garbes, in her Heavy Flow Podcast #59, “We have never valued female reproductive health financially, culturally, scientifically… So we do not actually know a whole lot and we fill that void with moralizing theories and value-driven opinions.

On July 1st, 2020, I birthed My Gynae Issues Foundation – a platform dedicated to Raising Awareness of various Gynaecology Conditions and their Impact on Women’s Health. Some of these conditions include: Uterine Fibroids, PolyCystic Ovarian Syndrome (PCOS), Endometriosis, Adenomyosis, Pelvic Pain, Pelvic Inflammation, Dysmenorrhea, Pre-menstrual Dysphoric Disorder (PMDD), Pre-Exacerbation, Period Stigma/Period Poverty, Vesico Vagina Fistula and many more.

For me, the month of July started on a very good note. Apart from it being the Fibroid awareness month, I am especially grateful for many reasons. Let’s just say in summary that I am happy about my present status. I am % Fibroid Free and also can now wear whites. Do you know how exciting that is for me? If you don’t, I will share some insight on this.

For over 12 years (2005 to 2017), I did not own a single white clothing; not one underwear, towel, bedsheet, or you name it. This was not because I was too lazy to wash my whites; rather, I thought it was just pointless wearing white coloured clothes which oftentimes got soiled with patches of red. No matter how white the fabric was when I purchased it, it soon changed colour. I was constantly seeing red as a result of excessive bleeding during my monthly period that I actually developed a special dislike cum phobia for the colour red.

Thankfully, that era is now over and I now gladly/boldly buy and wear whites even during my periods. I do this without the fear of spilling blood all over the place. I also do not mind wearing red items of clothing, etc. In fact, I own a few white as well as red dresses and I have been rocking them well since I got rid of the horrible fibroids. I am indeed thankful that I can wear white. I implore you to raise your glasses for a toast

 The journey to becoming fibroid free was long, painful and tiring. Having suffered from the severe effects of having multiple fibroids, I sometimes feel like I am qualified to liken myself to the woman who the Bible in Luke 8:43-48 describes as the woman with the issue of blood. She was one whose name was unknown, rather, she was defined by her condition.

Of course, there was a huge difference between my story and that of the woman with the issue of blood. I do not know the cause of her condition; all we know is that she bled every day continuously for 12 years. However, she had the determination of a survivor. In my case, I had fibroids which caused me excessive/heavy bleeding a few days every month for about 12 years; but unlike the woman with the issue of blood, I did not bleed everyday.

Can you imagine this woman’s plight. Her ordeal was quite pathetic. The Bible said she spent all she had, visiting many physicians yet she didn’t find a cure for her ailment.

She must have been ostracized because of her condition. She may have lost her friends/family. Clearly, there would have been no sexual intimacy with her husband if she was married. Also, because it happened in the time of Jesus Christ, we know that she lived in the era of the old testament.This means, she would not have been allowed into Church because of her bleeding. At the time, women who had a period were considered unclean during their periods. This means that she must have lacked spiritual mentorship and fellowship. If she could not go to Church, how did she strengthen her Christian faith?

How do you think this woman coped? She was a real survivor. She meditated with strong belief in her heart that if she could touch the hem of Jesus’ garment, she would be made whole. Thank God for the healing Jesus who eventually set her free from her affliction! This is my story and I share it, so that other women do not have to go through what I went through.

Once I overcame fibroids, I found myself again. I now boldly share my story to help other women. I speak up because every woman deserves the right to good quality medical treatment of their Gynae conditions. No longer can we bear for our symptoms to be gaslighted. Our voices must be heard and I know that we can only be loud enough if we raise our voices in unison. I stand for fibroid awareness and patients’ advocacy. July is Fibroid awareness month, and my goal is to reach 30,000 women, encouraging them to share their stories and get the right treatment option. I ask you to please stand with me. Together, we will stand tall against fibroids.

Fibroids negatively impacted my physical emotional and mental well-being. With fibroids, it was often very difficult for me to concentrate at work. I was always taking time off work to attend hospital appointments and subsequently was away from work for about 2 months each time I had a surgery. With fibroids, I had excessive bleeding which often made me severely anaemic with attendant consequences, including tiredness, low self esteem, mental/ emotional stress, depression and I was a shadow of my former healthy self.

I was not able to perform optimally at work because it seemed like my life revolved around my periods. I could have  built up my blood the month before and as soon as I had my next period, the quality of my blood would deplete so quickly (in less than 30 minutes) and it was like a the vicious cycle. I was just so grateful to have been able to at least hold down a job. If I did not have fibroids, I would probably be in senior management in my career by now. Be that as it may, I want to say a special thanks to the management of my current employment. My CEO was very supportive and made it possible for me to manage my health and maintain work life balance as much as possible. Thanks to Mr. Bolaji Balogun, CEO, Chapel Hill Denham. His support meant a lot to me.

It’s a very long story, but I will provide a summary. Shortly after I had my 2nd open myomectomy surgery, to remove Uterine Fibroids, I realized that the treatment method which both of my doctors had used was not at all sustainable.

I had been placed on an injection in the family of the Gnrh Analogue medication (Zoladex/Lupron injection). The aim of the injection was to shrink the fibroid tumors. After 3 injections, I noticed that my stomach became very flat, thereby giving me a false belief that the fibroids had disappeared, but the excitement was soon short-lived. As soon as I stopped taking the injections, the fibroids which had been successfully shrunk would then grow back to their original size. The Doctors still scheduled me for surgery despite my seemingly flat stomach and extracted mostly the big/visible fibroids.

At the time of surgery, some of the fibroids were either too tiny to be noticed; they were negligible, because of their small size. The disadvantage of leaving some tiny fibroids behind was that they potentially grew back to the original size which they were before the drug was asministered. This was what happened to me. After a successful surgery, the Doctor closed me up and sent me home only for the fibroids to grow back within 6 weeks post surgery.

This experience was quite painful. I also recall having a regrowth of fibroids after an incidence of self medication with the drug clomid. In my opinion, the fibroids grew because I took the drug without the supervision of my Gynaecologist. The leaflet made reference to the need for a gynae doctor’s supervision, especially for anyone who had a history with fibroids. I share this point in order to highlight the dangers of self medication. Apparently, the drug is capable of fuelling fibroid growth and like I mentioned, this point was stated in the leaflet contained in the medication, which I dismissed. I thought: what were the odds that I would experience that effect?!

After this particular experience, I realized that it was extremely expedient that I got actively involved in my own care. I decided that I would have a good understanding of the condition which had plagued me for so long. I was no longer willing to be the Doctor’s Guinea pig. I could not bear to be their experimental one so started researching on fibroids to understand the trend of its regrowth. I also put an ear out to find the most experienced fibroid specialist as I only wanted the best hands to look after me. I encourage everyone out there, do not choose a doctor at random, rather, research and due diligence should be employed to find a qualified doctor.

Once I found my doctor, (I chose a Nigerian Doctor who was trained in the UK, but practices in Nigeria. I think that the fact that a Doctor has seen many women with large fibroids is a prerequisite for understanding the dynamics of the condition. Please note that doctors who practice medicine in African countries are better with treating fibroids as they tend to see and treat more indigenous women who present with fibroids. They have this advantage over Doctors who practice in other parts of the World, especially in the West. We know that women of black origin are more likely to have and grow bigger/multiple fibroids.

I am not a Catholic but I was born at Sacred Heart Hospital in Lantoro, Abeokuta. I have heard many good testimonies about that hospital and I thank God for the initiative and the continued ideals by the Management. But for the expertise and dedication of the nurses and midwives in this hospital, my Mother could have become a victim of maternal mortality when I was born in 1979. My Mother had pre-eclampsia (a condition that affects many pregnant women). I was told that but for the timely intervention of competent midwives at that hospital, she would have died and my fate may have been unlikely as well.

It saddens me to note that almost 41 years after, in 2020, Nigerian women are still dying like chickens as a result of what should otherwise have been seen as ‘minor’ ailments like pre-eclampsia, oedema in pregnancy, high & low blood pressure, placenta previa, to name a few but the list goes on!

Why would a woman scheduled for a Caesarean Section (CS) not wake up after having anaesthetics administered to put her to sleep? Why can’t Doctors offer women an elective CS when they see that the mother or child is in danger? Women do not die needlessly in the UK. Even Libya had a fantastic health care system before Ghadaffi’s exit. Why can’t we get our priorities right in Nigeria?

Why can’t Churches begin to stand up and declare war against maternal mortality in Nigeria? The high incidence of maternal mortality & morbidity in Nigeria is unacceptable and I stand to challenge Pentecostal Churches who are more interested in buying private jets and building Churches at every nook and cranny of Nigeria. Why can’t these Churches be proactive to extend their benevolence into building one Maternity Centre for every 10 branches of the Church (I will not mention any denomination, but there are many of them out there).

We all know that more than half of the congregants of these Churches are Women; majority of whom are there in search of solution to their ‘childless’ status. If the Church can pray for Women to become blessed with the fruit of the womb, why can’t the same Church be interested in the care of the pregnant woman and ensure her safe delivery. Afterall, the miracles of Jesus Christ as seen in the Bible were sustainable miracles, they were not short lived.

Permit me to say that not all cases of maternal mortality is as a result of lack of prayer, but as a result of lack of adequate care or its neglect. I want to declare WAR on maternal mortality in Nigeria and I am looking for like minded people to stand up with me to fight this good cause. Are you willing to stand for this cause too?  Together, I hope that we can stop the trend of sad/avoidable deaths of pregnant women in Nigeria. I know that Maternal mortality is not the only issue we have in Nigeria but it is one that needs to be addressed ASAP. This is a CALL FOR ACTION! The International Day of Maternal Health and Rights is celebrated on April 11th. Every time I see a reminder on this date, a desire to make a change (no matter how little) is stirred within me. Eradicating Maternal mortality is indeed a cause after my heart. I will not stop speaking until something is done. So help me God!

ANSWER: According to Angela Garbes, in her Heavy Flow Podcast #59, “We have never valued female reproductive health financially, culturally, scientifically… So we do not actually know a whole lot and we fill that void with moralising theories and value-driven opinions.

Because fibroids are rarely talked about, there are a lot of misconceptions, myths, and stigma associated with it and other related gynnae issues.

For instance, women have been conditioned to think that pain which is often associated with many gynae conditions should be endured. We have been taught that painful periods are normal but to be honest, it is not. African women are of the belief that painful periods will subside when women start bearing children, but that is far from true. Painful periods may be signs of a condition called endometriosis which studies have shown that 1 in 10 women suffer from, globally.

In the same vein, doctors have not been able to tell us the exact causes of fibroids; yet, we hear all sorts of old wives tales about the causes of fibroids. Some school of thought say the womb is designed to carry a child and if a child is not put in the womb during a woman’s active reproductive years, the womb automatically fills the vacuum with fibroids and other unusual growths.

Late Mrs. May Ellen Ezekiel Mofe Damijo. She inspired me to study Mass Communication and like her, I wanted to be a TV presenter, talk show host and seasoned journalist. Unfortunately, she was cut short in her prime. She died as a result of complications from a fibroid surgery.

Late Ms. Kathryn Khulman – She inspires me to continue to desire a deep fellowship with the person of the Holy Spirit.

Mrs. Ibukun Awosika is a Christian and a high flying business mogul/executive. She is a godly example of a family oriented as well as a career woman. She is a woman of rubies.

Please, permit me to add my mother to this list. She will be the 4th woman who inspires me to be selfless and a strong one irrespective of life’s challenges.

My passion, tenacity and strong desire to be a positive change agent in my generation makes me a woman of immense worth. Women of rubies rock!

1. Creating awareness for various gynaecology/health conditions which affects women.

2. Providing support for women as they walk through their gynae issues.

3. Partnership with organisations who have a CSR budget, in order to get subsidised hospital/health care costs for women’s gynaecology conditions.

4. Provision of funding for patients who have a life threatening gynae related condition, but cannot afford to pay for their treatment options.

5. Advocacy for Patients’ rights.

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