Fibroid stories

Photos: Montreal Headshot (montrealheadshot.com) / Courtesy

Can we talk about uterine fibroids please? In this episode of Odyans, women get to the (red) heart of the matter to denormalize gynecological suffering.

Transcript

"I had lost so much blood, my iron levels were so low, anemia and all, that I had to have four blood transfusions."

"I started having hyper-painful periods, meaning that it was so painful that even the painkillers I used to take, because I take a lot of ibuprofen, it didn't calm me down at all."

"I would miss class. Let's say I was in class, I'd go into the bathroom and hide and cry because my stomach hurt so much."

"I've had heavy periods since I was 9. They are very heavy, in fact. My periods are terrible and I suffer from anemia all the time."

"It's unfortunate. It's like women have been given the title of whiners. Painful periods are seen as normal."

Today on Odyans, we're touching on a hot topic that affects millions of women. And when I say hot, I mean red hot. Yup! We're talking about menstrual flow, pads, blood. But also pain. Distress. Isolation. This isn't an ad for feminine hygiene products. No smiling, supposedly menstruating girl diving or swimming here. No, in our case, the girl would be anxious to get out of her chair. Or bent double with anti-inflammatories in her hand. Today on Odyans, we're denormalizing gynecological suffering. Today on Odyans, we're shedding light on a hidden issue that affects 1 in 5 women, especially black women. Today on Odyans, we're talking about uterine fibroids. So as we say: ann bay odyans.

If you don't know what a uterine fibroid is, here's a simple description by Aissatou Sidibé. She is the founding president of Vivre 100 Fibromes.

"A fibroid is a muscular mass found in the uterus, which can range in size from a small weight to a grapefruit, and can be located at several levels: inside the uterus, outside the uterus or in the uterine muscle. Some women won't experience any symptoms in their lifetime, but it's estimated that 20 to 40% of women will, and this will have a very disabling impact on their health."

Impacts come in all shapes and sizes. There's the really annoying kind...

"When I would go out of the house, I had to bring a 2nd pair of jeans, a change of clothes or anything just in case."

... And then there's the kind that really makes your life miserable.

"Even emotionally, it was heavy. I had a lot of anxiety and depression because of it."

The woman you are hearing is Lordna. She's a young woman who's always liked to move around, take part in physical activities, go out and so on. But in her teens, she began to suffer from ovarian cysts and, not long after, fibroids. It completely changed her.

"The slightest stress could trigger it. The first two or three days of my period, I already knew I couldn't leave the house. In terms of anemia, it was difficult: I was losing my breath even when I was walking my dog, I wasn't able to exercise for long anymore, when I'd go biking with friends, I would sometimes go 'no, I can't, I'm in too much pain or else I'll shut down every time."

Fibroids - and gynecological health problems in general - can totally dictate how you live your life. Just ask photographer and content creator Noire Mouliom.

"It impacts in many ways. It impacts my career, it can impact my family life or with my friends, my friendships and everything, in the sense that I often have to build my schedule around the cycle. I'd be like, okay, if I think I'm going to have my period around that week, we'll try not to book anything and really take it slow. But the thing about fibroids, and about endometriosis, is that often you get flare-ups. You don't know when to expect them. Sometimes, your periods are so irregular. It's a surprise, like boom! For example, you get on a plane, it triggers, you start bleeding on the plane".

Having fibroids means finding tactics just to get through the day. It means maneuvering as best you can, combining sanitary pads and tampons, lugging around spare linens and, when pain gets in the way, turning to pills. With all the problems that can entail. Take Berty's experience, for example.

"Towards the middle or end of 2020, I started having hyper-painful periods, so painful that even the painkillers I used to take, because I take a lot of ibuprofen, wouldn't help at all. I ended up taking so much ibuprofen that my stomach was irritated. I started to develop ulcers, and it was complicated [...] I have to put pads on top of each other. Ultimately, my flow is so abundant that I use post-partum pads. I use maxi pads that I have to change all the time. I tried the menstrual cup, but it didn't work. I'm not even talking about tampons. In short, it's been hell.

The majority of the women we spoke to were diagnosed as adults. And that's even though they'd been showing symptoms since their teens, or even before that. Marina, for example, was diagnosed with fibroids at the age of 29.

[...] I went to the emergency room with a horrible pain in my uterus and lower abdomen. It turned out to be a cyst that had exploded, according to the doctor on duty at the time. And when he did the ultrasound, he discovered that I had a fibroid the size of a tennis or ping-pong ball. When he did the analysis, I wasn't shocked because I knew it had to happen to me at some point, but I still reacted with a lot of anxiety."

What you need to know is that uterine fibroids are prevalent in Marina's family. And her periods have been difficult since she was a little girl.

"I've had heavy periods since I was 9. I'm very heavy, in fact. My periods are terrible and I suffer from anemia all the time."

Sometimes, symptoms caused by fibroids suddenly worsen later in life. This was the case for Cynthia. Before her thirties, her fibroids didn't cause her too much trouble. But during a particularly trying time in her life, her condition quickly degenerated.

"From 36 to 38, before the operation, the progression was rapid. For about a year, a year and a half, when I would go to work on the first days of my periods, I had to go to bed in the infirmary during lunchtime to be able to do the rest of my day, because I was really hemorrhaging throughout the 7 days. I started menstruating on June 1, I remember, in Haiti, where I was for my grandmother's funeral. Then we went to the United States for my uncle's funeral. And in the meantime, I caught chikungunya [...] I remember: from June 1st until I had my operation in October, I was hemorrhaging for four months. It was cups a day. I was already off sick because of the chikungunya. Then, after that, when they did the tests on me, I told them: "Well, it's been three weeks now, not only do I have chikungunya, but I've been hemorrhaging for three weeks, and it hasn't stopped". So they put me on sick leave. In fact, my sick leave for the death of my grandmother and my uncle just continued. It wasn't easy. My son was maybe 11 at the time. When the episode passed, a few years later, he told me that he had been a bit depressed during that period, because as a family we were used to going out and doing activities. Then, all of a sudden, Mom was lying on a sofa all summer long. I could only lie there."

The effects of fibroids can also be felt when you change your lifestyle. This was the case for Carolyne, when she stopped drinking.

"When I stopped drinking alcohol, I started feeling a lot of aches and pains, I guess, that I was covering up with alcohol. I started feeling like there was something in my stomach. I thought I was having digestive problems, so I went for a check-up. They did some tests and that's when they discovered a big lump. At first, they just told me that. They discovered a large mass that was abnormal. Of course, at first it's scary to be told you've got a mass and then not know what it is. Later, I had an MRI, to get a really in-depth look at what it was, whether it was a cancerous mass or a fibroid. That's when I learned what fibroids were. And honestly, at that point, I was hoping it was a fibroid and not, obviously, a cancerous mass. And it was indeed a fibroid, 7 cm in diameter, so it was pretty big."

In Carolyne's case, it was really after childbirth that her periods became atrocious.

"Honestly, I've never had periods as painful as these. Especially after pregnancy, when the uterus started to go back in place after childbirth. The first periods were horrible and still are."

Speaking of pregnancy... One of the problems with fibroids is their impact on the ability to get pregnant. Depending on where they are located in the uterus, they can hinder or even block any desire to carry life. They can make intercourse unpleasant, even painful. And they force people to make choices that require a great deal of foresight. The founding president of Vivre 100 fibromes, Aissatou Sidibé, went through this reflection when her fibroids returned 3 years ago.

"My fibroids came back. It wasn't a problem until I thought about conceiving. That's when I got to thinking, and said to myself: 'this is it. Here we are', because uterine fibroids can be a fertility problem. In 1% to 2% of cases, the fibroid is responsible for infertility. Statistically, we know that depending on the location of the fibroid, and on the surgeries performed. Yes, it's a risk too. When fibroids are removed, they move thing around in the uterus. So there are scars and adhesions. If you're not familiar with adhesions, do your research. It's complex, and in the end, it doesn't solve the problem, because when you want to get pregnant and there are fibroids, and you go for surgery, you're told that there's a time limit for the operation. And that's normal. You can wait six to a year for the uterus to heal. But who's to say that the surgery you've had won't affect your fertility later on? And finally, you ask yourself, especially when you're trying to get pregnant, 'could the surgery I had 3-4 years ago be responsible for my issues today?'"

Because of fibroids, women are faced with the difficult choice of enduring their suffering or giving up the desire to bear life. At nearly 37, Noire has reached this point, and must consider several different options for becoming a parent.

"Given that a few weeks ago, I had a big flare-up, bled for a month and a half and was really, really in pain, I'm currently wondering whether I'm going to have my uterus removed and find another way to have children. And that's something I'm going to talk to my gynecologist about next week, whether it's, like, maybe "froze my eggs" and see what my options are. Then like, I don't know, surrogacy or like adoption. I'm almost 37. I want to become a parent, but for me it's not the end of the world if I don't carry the child. It's something I've been thinking about for several years, because I've already had a miscarriage. For me, being a mother isn't just about carrying a child, there are many ways of becoming a mother. I'm not closed to the options that are available to me, whether it's in vitro fertilization, using a surrogate or adoption. I'm open to anything. But if I do get pregnant, I'll definitely be happy."

You may have noticed: many women are told that heavy flown and pain are just a normal part of menstruating.

(Berty) " I'd had very, very, very painful and heavy periods for several years and I'd always been told that it was normal, that you had to put up with it."

It's an idea that's passed on from mother to daughter, and from carer to patient. It's persistent, and we often end up internalizing it and enduring its sufferings for years. Until the day comes when we compare ourselves with others and realize that what we're experiencing is actually problematic. This was the case for Noire, among others.

"Unfortunately, in our cultures, our parents often tell us it's normal to suffer. My mother - maybe she wasn't too common about it, - would just say that it's normal to suffer, it's normal. But no, it wasn't normal how I suffered. I often missed classes. Let's say I was in class, I'd go into the bathroom and hide and cry because my lower abdomen hurt so much. Because my mom trivialized it so much, at some point it really started to sink in. I'm like, it's normal to have pain, it's normal. After that, in my twenties, when I looked at my friends, there was nobody who suffered like I did. That's when it started. It planted a seed. I told myself it wasn't normal the way I was suffering. It was getting worse."

Suffering from uterine fibroids can make you feel different from others, alone. Because yes, you have periods too, except in your case, they take up all the space and prevent you from living. And as Lordna explains, not everyone with a uterus understands this.

"I was embarrassed to talk about it. Sometimes I'd explain to the other girls that I bled a lot or whatever, and they'd say they did too. So I'd tell myself, 'Okay, everybody'. But not on the same level as me. It was completely different. I was embarrassed to go to the bathroom like three times in an hour. That's not normal. Me, I had to put on a towel AND a tampon. They were like, "What?! I was like, "Well, just in case. They were like, "Well, you can put on a liner. I was like, 'No, you don't understand. You don't understand, it doesn't work like that.'"

Medical wandering is another effect of fibroids. Women often have to consult several different health professionals before getting a viable diagnosis or treatment. This makes them feel isolated and misunderstood. Lordna, for example, describes it as a real obstacle course.

"Basically, I got the diagnosis after I had an ectopic pregnancy. That's when they found out that was the cause. After that, that's when I realized that the system wasn't necessarily there for me, because I'd been to the hospital several times with pains, but they'd never really done all the possible diagnoses to find out exactly what it was. So I found out later. I don't think I was followed. I was the one who had to run after the system to be able to make appointments, ask what could be done, if I could have a scan, if I could have this or that. Then in terms of pain, they wanted to prescribe me painkillers, but say they couldn't do anything for you."

Like others we've spoken to, Marina has felt that the weight her symptoms have on her life has been downplayed. And what makes her royally tired is the feeling that it's HER responsibility to get the right care.

"At the time, I was 29 when I found out. And as I said, the doctor behaved quite well, although he trivialized it. A lot of women have fibroids, don't worry, etc. I've always had this problem. I've always had this kind of trivialization, like you're not going to die from it, don't worry. But the reality is that I know how much it affects my life. My anaemia is a big problem for me, my heavy periods are a big problem for me. So it's always this trivialization, and I also find it very unpleasant to always have to fight, defend myself, assert myself in a stronger way when we talk about fibroids, as if the doctor would never take it seriously, so it's up to you to do it, it's up to you to do your research, it's up to you to protect yourself, and so on. That's the hardest part for me."

Trivialization also comes from more than just the people around us. It's society as a whole, which sends us the idea that having a uterus comes with pain and discomfort, and that we have to get used to it. As Carolyne says:

" It's unfortunate. It seems that women have been given a title of... Ah, they're whiners. Painful periods are normal. "

This trivialization and feeling of being misunderstood creates the impression that we're on our own. That our pain doesn't count. According to Aïssatou, from Vivre 100 fibromes, public awareness is necessary, even inevitable.

"Oh, it's nothing. It doesn't kill you. Yes, women complain. It's normal to have periods. So there's this kind of trivialization and frustration of not being listened to by the right people who are there to treat us or simply to listen to us in our entourage. And a form of isolation too. Where do you go when you have a diagnosis that provokes you, that actually rots your life? I'm in a good position to talk about this, as I lived with fibroids for 10 years, but I was a former top-level athlete. There were some tough mornings, yes. We have to keep talking about it. There aren't enough platforms talking about it. For me, fibroids are a public health issue. When you look at the statistics, it's alarming. And I'm saying this: soon, we'll be raising awareness of breast cancer in October. More and more, we'll be raising awareness of fibroids and endometriosis. The figures speak for themselves.

What are the solutions for people with fibroids? To manage symptoms, there are natural health products, infusions, hot water bottles, magic bags and all the other natural remedies. But there are also lifestyle changes, like the ones Noire has made.

"I had already started to change my lifestyle, especially in my early thirties. I realized that there were certain foods I had to cut out. I reduced my consumption of red meat enormously. I'm of Haitian and Cameroonian origin, and we eat a lot of meat in our cultures. I also love dairy products and cold meats. I've cut back a lot on that. If I do, it's during the holiday season, when we deprive ourselves of life's little pleasures! I avoid gluten, but it's often everywhere. It's extremely difficult to be careful when it comes to food, because in restaurants, for example, you don't have many options. You're used to cooking, eating pasta and bread, and cutting everything out changes your mindset a lot. I've also started doing yoga, which has helped me enormously, especially on a mental level. You have the physical pain, but you also have the mental pain, of being tired of fighting with it."

There's also medication. It can bring great relief, but it can also not work. And it causes effects that are frankly undesirable. Clearly, it's not for everyone. As Aïssatou says, "choosing between the plague and cholera, at some point you say no, what."

Berty, for example, tried an injection treatment for six months, and found it well worth the effort.

"For people who have experienced painful periods all their lives, they'll understand when I say that it changed my life to not have my period. There was a time in my life when I felt like I was menstruating all the time because I was in so much pain that it took weeks for my uterus to recover after my period. And as soon as I recovered, I was already in the new cycle and still menstruating. So to go 6 months without my period, frankly, was unhoped-for. It changed my life completely. I had a better quality of life. I could spend time with my friends, with my family, make plans, without worrying about the pain, without worrying about the flow [...] With decapeptyl, already, in terms of not having my periods so abundant, it was good, not having my periods at all. On the other hand, there are a lot of side effects because it's a bit of an artificial menopause in fact. I had a lot of hot flashes, which weren't interesting.

Berty says she even developed high blood pressure after her treatment. She says it well: she hasn't found anything that establishes a direct link between the two. And she had a family history of high blood pressure before she developed it. Still, now she has to take lifelong treatment for it. But for her, it's the lesser evil.

"But it really changed my life. Decapeptyl didn't make my fibroids disappear, it calcified them, which means that today I have fibroids, they're there, they're visible in an ultrasound scan, but they're no longer active. My gynecologist likes to say that I've earned a 4-5 year reprieve, because most of my girlfriends who were diagnosed almost at the same time as me, or afterwards, or even people in my family who have had surgery, some are on their second, third or even fourth operation to remove fibroids. Thank God I haven't had to go through that yet. And the other interesting thing is that I got pregnant in the meantime. Afterwards, I just decided that it wasn't the right time for me, but it also proved to me that I could get pregnant naturally and that I didn't have any problems in that respect."

Carolyne also tried the injections, and she was the opposite of Berty: she wasn't at all thrilled with the results. Even less so with the side effects.

"I was offered several treatments. I don't remember all the treatments, but it was either the contraceptive pill to help control the lump or, the choice I made, which was a choice to melt the fibroid, which was Lupron Depot. I had been very well warned about the symptoms this drug could cause. They were symptoms very similar to menopause. But it was the option with the best chance of melting the fibroid, so I did Lupron Depot for six months. The symptoms were horrible, I'm not looking forward to the menopause: hot flushes, depression, dark features. Then finally, six months later, the fibroid hadn't moved, it was still the same size, although I think it had grown a few millimetres. So would I make the same choice again? Well now, knowing that, no. I didn't ask so many questions about how well it works on women. And again, I'm aware that every woman's body reacts differently to medication. So I was one of those women who didn't react."

Another form of treatment is myomectomy. This is when fibroids are surgically removed. Lordna had it done in July 2023, after telling the doctors about her desire to become pregnant. The benefits were phenomenal. She's the Lordna she used to be, and even a year later, she's moved to talk about it.

"After my recovery, I started training. I'll tell you, the first time I got on a treadmill, started running and wasn't out of breath, I started crying. Just to tell you how it made such a direct impact. Just from day to day, being able to do sporting activities, whether it's in terms of my fatigue, it's really helped me. My anemia, my hemoglobin really went back up. I haven't had to go back to hospital since. I was going to the hospital almost once a month, or two months, for iron transfusions because I couldn't do blood transfusions. It was really heavy. Since my operation, I can see the difference. Mentally, I'm less anxious. I have much less anxiety. In terms of depression, I don't think I had any symptoms at all. That helped a lot because I know it was directly linked to the fibroids. I went for counselling, I found help, but there was nothing I could do because it was physical and health-related. Now, yes, I've found myself again because I think I have so much energy inside me, and then I said to myself, you know what, it's affected me too much, I'm fed up, I don't want it to affect who I am. I have so much to give, and I want to be there. That's why I give 100%.

As Aissatou said earlier, myomectomy is something to think about if you want to carry life, because it has its risks. You have to be aware of this and take the necessary steps beforehand.

"Back then, when I had the operation, I knew there was a risk to my fertility. I knew it. I had done my research as a fibroid. I had done my research. At that time, I was 32 and I don't know, maybe when I was doing my research, I had a fertility check-up and I saw at the time that my ovarian reserve, the AMH, and this is something I advise all, I mean ALL women of childbearing age, whether they're single, in a couple, in difficult situations or not, to ask for a fertility check-up beyond the age of 30. Even beyond the age of 30. After 35, it's a bit late, but between 30 and 35, I think it's interesting, because by then, you're trying to start a family. And even if you don't want to, it allows you to take concrete action. And what are these concrete actions? Quite simply, to take stock of the situation, to carry out a fertility assessment. We often hear people say to you, I don't need one because, or from the doctor, you're single, there's no desire for a child right now, well, it can wait. Why have a fertility test? But knowing that there's a problem, egg freezing, that's a concrete action we don't talk about. We don't talk about it much in the community, but it's still something concrete, because the day we want to conceive, we can use our own eggs if there's a problem. So, at that time, I remember, at 32, I said to myself, OK, are you ready to freeze your eggs or not? It took some thought. And in the end, I made the choice by saying no, to my heart's content."

For the time being, the only way to be sure of getting rid of fibroids and their symptoms for good is a hysterectomy. This is when the entire uterus is removed. It's radical, it's not for everyone, it prevents you from getting pregnant, it has downright unpleasant effects, but it gets rid of fibroids for good. Remember Cynthia, the one who endured 4 months of hemorrhaging, on top of the chikungunya? Well, she had a hysterectomy and describes it as a true deliverance. Despite the convalescence, despite the menopausal symptoms. And Cynthia is well aware that it's not a solution for everyone.

"Today, I'm fine. I mean, it's been 10 years. It was the best thing in my life, medically speaking, because it freed me completely. I mean, my energy came back, I had no more constraints, no more periods, it was joy, on that level. But that's my story. Every woman experiences it differently. I couldn't take it anymore. I couldn't live like that anymore. I'm getting emotional talking about it because it was a really difficult time. It was like, hey! The sooner we can get this over with, the better. I know there are a lot of women who feel like they don't have their uterus anymore, that their femininity is affected. But I've decided not to define my femininity in terms of a uterus. I told myself that there are other things that define femininity. For me, I really didn't experience it as a loss of femininity. I could do something else. I could go back to having a normal family life. Yes, there were questions. You don't decide to do something like that without asking yourself some questions. Then I asked myself. I said to myself, am I going to feel less of a woman afterwards? But I'd already made up my mind that that's not what defines a woman, so that helped me. But having spoken to other women who have either been through this or who don't want to have this operation because they're afraid of not feeling like a woman afterwards, I can understand."

If the content of this episode is resonating with you, the key word here is to get getting a consultation! And insisting on getting to the bottom of things. Because, as we say in Creole, se met kò ki pou veye kò. It's up to you to take charge of your health, to be an active player, as Vivre 100 fibromes says.

Noire: "If you're young, in your teens, and you're already suffering, insist that the medical profession carry out further tests right away," pleads Noire. You don't have to take the contraceptive pill, for example. There are other options available to you.

Lordna: "You really shouldn't trivialize it. Not at all. Whether you've got a sore arm or a sore leg, just check it out. If ever a doctor tells you that, basically, it's going to go away, we'll try to wait a while, you're still young or whatever, especially because of the risk of them telling us that we're young, No, absolutely not. Get a second opinion, a third opinion if you have to. There are fertility clinics, turn to the private sector if you need to and have insurance."

Odyans is written, produced and directed by Christina Dabel and Ralph-Bonet Sanon. We'd like to say a big thank you to everyone who shared their stories with us for this episode. We'd also like to thank Vivre 100 Fibromes for all their support. You can find out more about their services at V-I-V-R-E, 1-0-0, F-I-B-R-O-M-E-S, point C-A. You can also follow them on Instagram and Facebook. If you like Odyans, comment and rate the episode on Spotify or Apple Podcasts. It really helps spread the word about what we do. You can read our news and find all our episodes, with transcripts, at odyans.com. Thanks for listening, and see you soon!