What is Endometriosis?
Endometriosis occurs when tissue that is similar to the tissue that lines your uterus grows outside of the uterus. This tissue acts as regular uterine tissue does during your period: It will break apart and bleed at the end of the cycle. But this blood has nowhere to go. Surrounding areas may become inflamed or swollen. Endometriosis causes long-term chronic pain, scarring, lesions, adhesions and cysts.
What are the Symptoms of Endometriosis?
Common symptoms of this condition are;
- Pelvic pain
- Severe menstrual cramps
- Back pain during your period
- Fatigue that refuses to go away
- Painful sex
- Trouble getting pregnant
- Heavy periods
- Unusual vaginal bleeding
- Diarrhea or constipation
- Pain while peeing or pooing (especially during your period), etc.
Still, some people with endometriosis have no symptoms. Often, they find out they have the condition when they can’t get pregnant or after they get surgery for another reason.
In honour of March being Endometriosis Awareness Month, 21 Magazine seeks to create awareness of this gynaecological condition that affects 10% of women of reproductive age worldwide. That is a woman. Experts believe this figure is significantly higher due to underreporting, misdiagnosis and lack of non-surgical and non-invasive diagnostic methods. Unfortunately, for many of these women, there is often a delay in diagnosis of endometriosis—an average of 8 years—resulting in unnecessary suffering and reduced quality of life.
Veronica*, Idara*, and Adenike*, three Nigerian women living with endometriosis, vulnerably share glimpses of what it means to live with this gynaecological condition.
Veronica* is a 27-year-old heterosexual woman. She was diagnosed with endometriosis in 2022.
What Were The Symptoms You Were Experiencing Before Being Diagnosed With Endometriosis That Alerted You To A Potential Health Issue?
The number one symptom would be infertility, the inability to have kids no matter how hard I try. I guess that’s like free contraceptives, lol. I was trying for a child, and I couldn’t get pregnant. I’ve still not been able to have a baby, and I’ve been married for five years. We’d been trying all through those years. Three years in, I went to see a gynaecologist, and she was like, yeah, this is definitely endometriosis.
I also had excruciating period pains. I typically start feeling the pain seven days before my period begins. They get so bad, I feel it in my legs. There are months that I can barely walk. Some months, it moves from my leg to my right hand. At other times, the pain is in both legs and one hand, but thankfully, I have never felt it in my left hand. There’s the waist pain, too. Since I started my period at the age of 10, I have always had bad cramps, but I just thought- everyone has cramps.
And there’s the bloating, which gets crazy whether I eat or not. The weight gain stresses me out. It’s just really hard cause everyone is like, ‘Go to the gym’, and you can’t really explain that there’s no amount of healthy eating or exercise that will make you lose the weight you want to lose. There are times when it’s hard to do anything. I’m just really, really, really, really, really, really exhausted. No matter how hard I try, I’m just exhausted. Even if I want to work out, I just feel exhausted.
I also experience pain during sex as well, but it isn’t frequent. I realized this happens if I have sex really close to my period. It’s like the worst pain I’ve experienced in my entire life. I don’t know if other people have this. But basically, God, the pain during sex is crazy. It feels like my insides are inflamed or like there’s a trigger or something. I would actually pick the period pain over the pain I experience during sex. Seven days leading up to my period, I try my best not to have sex.
Omo. Are Your Periods Consistent?
My period is very consistent, actually. I get it every month. There was a year I didn’t see my period for about six months, but this was four years ago, and since then, it’s been fine. Oh my God! How can I forget the worst symptom? Heavy, crazy periods.
My periods are extremely heavy. I use the pads for mothers who have just given birth. That’s the only way I can actually survive. Sleeping while menstruating is a herculean task. I have to put a towel under me, and sometimes I still stain the towel- like it goes through the towel and straight to the bed.
I experience bleeding (besides my period) sometime during the month. It could be three days after my period, and it’s usually brown blood. It’s not spotting for sure because I need a pad to run through it, but it isn’t so heavy.
Also, I vomit randomly during my period—a week before my period, and after my period. To be honest, I can vomit at any time. Everything makes me nauseous.
Do You Mind Sharing More About Your Struggle With Infertility?
So I get married and after like three years, everyone’s like, oh, where’s the baby? And then I’m just like, Ah, that’s true, where is the baby?
I was able to get pregnant once, but I had a miscarriage at seven weeks, and nothing ever happened after that. That’s what led to me figuring things out.
How Did That Make You Feel, Learning That You Have Endometriosis?
I felt seen because I remembered when I used to have really bad cramps, and my ex and friends at that time used to make it look like I was exaggerating and trying to seek attention. It may sound bad, but I’m happy I know that this is the cause of most of my issues. It’s like getting closure.
I just wish there was a cure. I don’t think there is. I’m hoping to get an LA laparoscopy. I’m saving for that, and I’m going to have it as a birthday gift. Hopefully, it can reduce the symptoms. I know you have to do the procedure often, like every three years or two years, depending on your body. I’m hoping that I’m blessed to be able to do it that often.
In What Ways Has Endometriosis Affected Your Life?
Endometriosis has affected my life in so many ways. It’s made me insecure about my weight gain. Growing up, infertility was like one word I never thought I would experience. We’re all trained to be mothers, and no one ever tells you that, oh, there’s a possibility that you might not be a mom. Nobody prepares you. I just never knew that it was possible to not easily be able to have babies. And just seeing how animals, like a dog, can easily give birth, lol, and I can’t; it’s just absolutely crazy to me. I know that sounds quite wild.
The condition has played a huge part in my marriage, relationships with family members, and productivity at work. I almost lost my job because of how tired I was all the time. Everyone experiences exhaustion, but the exertion from endometriosis is up there. I’ve had people call me lazy and things like that, and I stopped really caring since I found out that it was endo. I’ve given myself more grace.
In regards to sex, sometimes my husband sees the pain I go through, and he just postpones intercourse for another time because he can’t bear the possibility of seeing me in that kind of pain.
How Are You Coping With Living With Endometriosis?
Diet. I am far from consistent, but like a week before my period, I’m very careful with the kind of carbs I take. Less sugar, no dairy and I only drink alcohol once in a while; endo hates it so much. Caffeine can almost take my life if I try it close to my period. When I can, I go on walks.
Days to my period and the first two days of my period, I stay away from people and hard work beause the fatigue and mood swings make me look so bad. I sleeeep a lot. Man, I can’t kill myself! I also take a lot of multivitamins to keep me going—iron, magnesium, B complex and vitamin D
Lastly, prayers because for some months, I’m just like, Jesus, who did I offend?
Idara* is a 23-year-old woman. She was recently diagnosed with endometriosis in January 2024.
What Were The Symptoms You Were Experiencing Before Being Diagnosed With Endometriosis That Alerted You To A Potential Health Issue?
Severe Cramps.
And How Did That Make You Feel, Learning That You Have Endometriosis?
It was a lot. At first, I was dazed because I already had a fibroid, but later on, I just accepted it. Some days, I think about the kind of situation I’m in and feel like my body has betrayed me.
How Has Endometriosis Affected Your Life?
I can only work from home because I can’t do anything tedious. I try to get as much rest as I can. It can be hard to create a balance between remote work and rest, but I know that rest is very good for me. I try to watch what I eat, and I’m supposed to be exercising because I heard it helps, but I’m lazy.
How Are You Coping With Your Endometriosis?
For my cramps, I use drugs. There’s no two ways about it.
Adenike* is a 39-year-old woman. She was diagnosed with Endometriosis in 2014.
What Were The Symptoms You Were Experiencing Before Being Diagnosed With Endometriosis That Alerted You To A Potential Health Issue?
I was finally diagnosed with endometriosis 10 years ago after 20 years of suffering from excruciating menstrual pain and nonstop bleeding, which has become debilitating over the years.
How Did You Feel Upon Confirmation Of Your Diagnosis?
The suffering long preceded the diagnosis, so it was a relief that there was confirmation that something was/is really wrong and “not in my head”, as doctors like to say. After I was diagnosed, I wished I could go to everyone who said I was lazy or pretending to be unwell to escape chores to tell them, “You see!”
How Has Endometriosis Affected Your Life?
Endometriosis has stolen my life: loss of earnings, loss of opportunities, loss of romantic relationships and friendships.
The bleeding was so bad that I used to call myself “the woman with the issue of blood”. There was one time my dad came to pick me up from campus to go home for the weekend. We spent hours in Lagos traffic, and I was bleeding so badly that I was too embarrassed to tell my dad, so I tried to clean it up as best as I could when we got home. The following day was a Saturday, and my dad picked up his friend to go to a wedding. They didn’t even get to the church service because his friend’s white agbada was stained with blood; they were alerted by passersby as they got out of the car to enter the church. Anyway, I eventually had the awkward conversation with my dad I was avoiding the night before.
I have lost opportunities because, for the last 10 years of my life, I was actively trying to keep myself alive. I was constantly in clinics and hospitals, seeing doctors and specialists. I can tell you honestly that at least 25% of my earnings in the last decade have been spent on medication and healthcare. At every job since I started working, I have to constantly explain to my employers that I have a chronic, invisible illness that requires a lot of accommodation. I have been called a liar, lazy, unserious and told that I am using my illness as a crutch. School and work have been difficult for me in the last decade because even though I have patiently explained with proof of my illness and continuous need to visit healthcare practitioners, I have not always been believed. I have lost school places and already promised job opportunities.
Relationships have been difficult to maintain as well. Romantic partners have ghosted me, and some have told me “You are always sick, and I am forced to take care of you”. Friends called me a party pooper, and slowly over time, those friendships fizzled out. I mostly keep to myself these days because I don’t think I can take any more friendship breakups or disappointments, and the only person I trust to have my back and be understanding is me.
Society isn’t kind to women who suffer from endometriosis, and even though I am hopeful that a cure will be found in my lifetime, I am beginning to suspect this is just wishful thinking.
*This article was edited and condensed for the sake of clarity and privacy