Guest Contributor Mina: We Need to Talk About Fibroids

It hurt my heart to read Dede’s piece “Please God, Let Me Be Fertile” and it was this line: “It didn’t help that anytime I asked people what they knew about uterine fibroids they were so ignorant” that really struck a chord with me.  Fibroids are definitely a “been there, done that” experience for a good number of us African women, so why don’t we talk about them more? Why don’t we all know more about them?

When I was growing up, I’d only heard about women my mother’s age having hysterectomies because their fibroid-ridden uteruses were giving them all kinds of hell. But then when faced with my own personal fibroid drama at the grand old age of 25, I realised that fibroids in the African woman under 30 are not as rare as one would hope. I kept hearing about people’s cousins and nieces and their fibroid stories.  So I ask again, if it’s something so many of us are facing, why isn’t it more a part of everyday discourse?

Dede’s piece answered that question in a way that surprised me. The words “ashamed”, “embarrassed” and the ultimate stinger: “less of a woman”, made my stomach tighten.  Our silence around fibroids, I realised, is more than an extension of our silence around all things menstrual/ vaginal/ reproductive. It’s cloaked in so much more ignorance and fear. And that has to come to an end.

I’ve decided to share my fibroid story in intimate detail to get the conversation going.  I should warn you that this is going to be a long one, but please bear with me. Read, share and comment. Let’s break the cycle of silence and educate and encourage each other.

Love,

Mina.

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My periods have always been painful.  I used to knock back Ibuprofen like it was candy. My mother kept warning me to ease up on the painkillers because Ibuprofen (and other Non-Steroidal Anti-Inflammatory Drugs (NSAIDS) like Aspirin and Naproxen) could lead to a nasty peptic ulcer if used in excess. I told her that I needed to function, I had classes to attend, places to go, people to see and I couldn’t spend 2-3 days every month curled up in a ball wailing like wounded animal. So I kept popping those pills and hoped that her scaremongering was just that.

Maybe it was because I was always so drugged up that I didn’t realise that my period pain was gradually getting worse and worse and the amount of Ibuprofen I had to take to keep it at bay getting higher and higher. One day, I hit the maximum dose for the day, but I was still in pain. I crawled to my GP and she prescribed Mefenamic Acid, also an NSAID, but prescription-only and purported to help lessen the flow, which for me had also been getting progressively heavier. I took the Mefenamic  Acid and it worked like a charm, until a few months later I found myself clutching my tummy and writhing on the floor at 2am as my housemate called me an ambulance.

What had happened? The ulcer warning had become the ulcer reality. After that, I was banned from taking NSAIDS and faced dealing with my periods using Paracetamol  or Cocodamol (Paracetamol with Codeine). Neither of them worked particularly well and the latter made me so drowsy, people at work began to notice I wasn’t always all “there.”  My periods were so heavy that I became severely anaemic and one sunny summer afternoon, as I was walking back from the ladies room at work, pretending I didn’t feel like someone had taken a chainsaw to my lady bits and there wasn’t a bloody waterfall gushing in in my pants,  my body decided enough was enough and I collapsed.

The doctor at A&E took some blood samples and was alarmed at how low my HB count (a count under 12 indicates anaemia, I was just under 8) and blood sugar were (I hadn’t eaten all day because of the pain-induced nausea I was suffering).  By this point, I had lost 25 pounds in 3 months (also partly due to the duodenal ulcer and the fact that it hurt when I ate) and I was always exhausted. Even the contraceptives I had been prescribed to lighten my periods did nothing but make me irritable and weepy.

I lived in an overwhelming fear of my periods. I planned my life around them and dreaded the next period as soon as the last one ended. I didn’t travel, visit friends, go clubbing or leave the house for any reason on period day 1 and sometimes day 2.  If day 1 fell during the week, then I had to call in sick or work from home.  I could bleed through a pad and my clothes in 30 minutes (thanks to that wonderful thing called “flooding”). My GP kept throwing drugs at the problem, talking about “the conservative approach.”  Fibroids were never mentioned.

Then one day I was walking back to the office from lunch and I felt this almighty wrenching pain in lower abdomen that took my breath away. I couldn’t move. I shuffled awkwardly to the side of the pavement and leaned against the wall, trying not to scream as the pain radiated through my body. It felt like someone was trying to pull my womb out from between my legs.  After a few minutes, the pain subsided a little and I managed to make it back to the office. Later that afternoon I went to a walk-in clinic. The nurse tested my urine, examined my abdomen and found nothing.  “Maybe it’s your period”, she said. “No it can’t be,” I replied, ”I’m not due for another 4 days.”

Ladies (and gentlemen who have made it thus far), it was my period. It was just a new symptom, i.e. period pain that started waaaay before the actual bleeding did. I had had enough. It was bad enough that even ovulation had started causing me pain and spotting, now this! I decided I could not continue with this kind of life. I booked an appointment with my GP and showed up, figurative guns blazing, not ready to countenance any more of his “conservative approach” bullshit. I demanded an ultrasound. He took one look at my angry face, open his mouth, then closed it as he decided against arguing with me. He told me I would have to wait a few weeks as it wasn’t an emergency. “Fine,” I said. “Something is not right and I want to know what it is.” He nodded and mumbled a nonchalant “okay.”

And that’s when all the fun and games began.

The ultrasound itself was uneventful for the most part, although I did notice the technician furrowing her brow and circling something on her screen as she pressed the probe into the left side of my lower abdomen, which was quite tender. A few days later I was back with my at my GP’s office, ready to discuss the scan’s findings. I knew something was wrong as soon as I walked through the door. His normal aloof demeanour had been replaced by a look for concern, and his “please take a seat” was in a soft, almost paternal voice.

He launched right in, saying in what sounded like one long breath, “You have a large fibroid protruding into your uterine cavity. It’s about the size of a tangerine and is probably the reason why you have been having such heavy bleeding and pain during your menses. It will need to be surgically removed. I have referred you to the Women’s Hospital to see a specialist there. Do you have any questions?”

There it was. I had my answer. And it felt horrible. I felt the tears welling up in my eyes and my throat felt like it was in the vice grip of a body builder. “A fibroid?” I managed to squeak. “Yes,” the doctor replied. “It’s relatively common in Afro-Caribbean women, however it is rare for it to develop at such a young age.” I sat in silence for a few moments, trying to swallow the squeezing in my throat away. “But a tangerine isn’t that big, is it? There are other options aside from surgery, right?” I asked. “Well, your womb is normally about the size of a tangerine so the fibroid is distorting it a fair bit,” he replied.

I managed to hold myself together until I walked out of the building, then the flood of tears started and cried all the way to the bus stop. I didn’t care that people were looking at me funny. The thought of surgery terrified me. The thought of surgery “down there” horrified me. I had already come to associate my womanhood with pain and nuisance and now this. I worried that the surgery would go horribly wrong and I’d bleed to death on the table. Fertility wasn’t of  huge concern to me – I made peace with the possibility of adoption if marriage never happened for me (and even if it did) a long time ago. Besides, as I later found out, given that my fibroid was “submucosal”, ie protruding into my uterine cavity, taking it out would actually increase my chances of being able to pregnant and sustain a foetus. A small silver lining on one ominous grey cloud, I guess.

My meeting with the gynaecologist was so brief, so to-the-point. As soon as she heard that I was bleeding through 2 pads an hour, she said “oh no, the fibroid has to come out.” And that was it, my surgery was scheduled and its risks explained to me. I was going to have a hysteroscopic fibroid resection. They were going to get into my uterus through my vagina and dilate my cervix and use some electrified wire loop to shave the fibroid out. No abdominal scars. In an out of the hospital on the same day. Small risk of perforation or bleeding. Sounded like a fun day at the park.

I spent the time between my gynaecologist appointment and my surgery date researching everything about fibroids in general and submucosal fibroids in particular. I scoured the internet for hysteroscopy horror stories (and to my relief, didn’t find any). I showed up for my pre-op check-up a week before the big day and had my blood and urine tested. I even had an EKG (I can’t remember why). My surgery was coinciding with my mother’s annual summer visit so I was guaranteed a whole lot of post-op TLC. My housemate agreed to pick us up from the hospital so I had a ride home. I was as ready as I would ever be.

So imagine my surprise when a couple of days later I missed a call from Linda, the pre-op nurse. She left a voicemail saying that my bloodwork revealed that I was shockingly anaemic, way too anaemic for surgery and that my operation had been cancelled. I was to report at the women’s hospital as soon as possible to discuss a new course of action. She kept rambling on, repeating herself. I’m guessing she had never seen an otherwise healthy-looking 25 year-old with the HB almost low enough to require a transfusion.

I wasn’t as surprised. By this point, I was struggling to climb the one flight of stairs to my room without feeling light-headed. The slight incline on my way to the bus stop near my house was enough to have me gasping for breath, feeling nauseous and seeing double. I wondered what they had planned for me, hoping it wouldn’t be more constipation-inducing iron pills. I had tried taking iron pills before but it was like trying to fetch water in a basket. My monthly blood loss was outdoing any good work the pills did, but I still suffered the side effects.

My doctor did one better and put me on a 3-month course of thrice daily iron tablets and a 3-month course of Prostap injections. Prostap is a drug that, simply put, was going to shut down my ovaries’ production of oestrogen, putting me into a temporary menopausal state. Yep, you heard right. Menopause. At 25. This fibroid saga was just getting better and better.

“But why?” you may be thinking. Well, it turns out that the growth of fibroids is stimulated by oestrogen, so ridding my body of oestrogen would ideally make the fibroid shrink, making it easier to remove. In addition, it would give me a break from my periods and give my HB levels a chance to rise to operable levels.  Made sense, at least on paper. Once again, I turned to the internet, reading the experiences of other women who had been on Prostap for fibroids or endometriosis. It was reassuring as the worst of the side effects seemed manageable, in theory at least.

Nothing prepared me for the menopausal hot flushes though. I would be sitting at my desk at work, or lying in my bed at night, or even taking a shower and the most overwhelming heat would descend on my body. I would sweat profusely, feel desperately thirsty and incredibly uncomfortable in my clothes. If I was lucky, it would be over in a matter of seconds. If not, it could continue for a up to 10 minutes. I once had a hot flush during a one-on-one meeting with a senior member of my team. He looked so confused as all of a sudden, out of nowhere, sweat started pouring own my face. “Are you alright, Mina?” he asked. “Oh yeah, I’m fine. I’ve just had a bit of a fever these past few days. I think it’s finally breaking.” I am such a useless liar.

Surgery day finally arrived. My pre-op bloodwork had revealed an HB count of 11, the highest it had been in years. As I waited for my turn to be taken upstairs to theatre, I alternated between being relieved that it was finally almost over and feeling sheer terror at the thought of being knocked out and sliced up. I somehow managed to stop myself from running out of the hospital screaming, my open-backed gown flapping in the wind and my buttocks jiggling gracelessly for all to see.

When my turn came, one of the nurses, probably sensing my terror, accompanied me upstairs and stayed with me until I was out cold. She held my hand while the anaesthetists tried to find a vein to hold an IV. I am forever grateful to her for that. The anaesthetists tried unsuccessfully about 7 times to find a vein before this huge man grabbed my wrist so tight I thought he would break it and stared slapping the back of my hand to make the veins stand out. It worked, thank goodness. “We’re going to put you to sleep now, Mina,” I heard someone say as an oxygen mask was put over my face.

The next time I opened my eyes, 2 hours had passed, I was in recovery and my lower abdomen was on fire. “I’m in pain,” I moaned, confused as to where I was. I think I even tried to get up from the gurney, but the recovery nurse held me down and gave me a shot of morphine. It knocked me out, but when I woke up again 15 minutes later the pain was still there. “I’m still in pain,” I wailed. Another shot of morphine. Another lost 15 minutes. Another waking up still sore, a thick pad wedged between my legs.  The nurse told me I had maxed out my morphine and I would have to wait till I got back to the ward to get some oral painkillers. Life can be so cruel.

I was discharged later that day, after I was able to hold down some food and my blood pressure returned to normal. Because of my history of ulcers, I was given only paracetamol for managing post-op pain at home, but I was okay with that as it wasn’t any worse than the cramps I had become used to. I was alive, there had been no surgery complications and the surgeon said they she had managed to get the whole fibroid out without going too far into my uterine wall. A pretty decent outcome.

I was back at work a week later, my periods returned a couple of months after that and the last of the niggles from the surgery disappeared after three months (apparently my cervix was a bit bruised and angry and so took a while to settle down).

It has been about 18 months since my operation and I feel like a different person. My periods are still fairly heavy and occasionally I have to take some paracetamol for cramps, but it is nothing like it was before. I have enough energy to exercise and I haven’t stained my sheets in ages. I do sometimes worry that the fibroids will come back and that the next time they’ll be located somewhere that requires open surgery to get them out. And I do occasionally wonder if all these problems with my reproductive system are an indication of future problems with conception.

But then I remember that I am more than the sum of my lady parts and their functionality. I remind myself that I live in an age where advances in medicine and science have rendered obsolete much of the traditional advice on having kids “as soon as possible ohhhh” after fibroids. I remain steadfast in my belief that there is a right time to have children and that there is nothing abnormal about not having any. Above all, I have decided to always put my health, wellbeing and quality of life first, societal expectations be damned. I am a woman, and the last time I checked, “woman” did not mean “born to suffer.”

Love,

Mina