The hidden pain of fibroids

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1:18Hello, I'm Mick Rufferuk. Welcome to the documentary from the BBC World Service. This time in BBC OS Conversations, we bring together people to share their experiences of a medical condition that affects millions of women around the world, but until it was highlighted by a Hollywood star, has rarely been talked about. Almost a million people have now liked a candid post shared by actress Lupita Nyong 'o. Lupita wrote that in 2014, the same year as her Oscar win for 12 Years a Slave, she discovered she had uterine fibroids. This is where non-cancerous growths develop in the uterus, which is the medical term for a woman's womb.

1:58Symptoms can be severe and include heavy menstrual bleeding, painful periods and stomach pain. Black and Asian women are more likely to be affected. And in a moment, we'll hear from three women who share their experiences of living with the condition. Treatment options for fibroids are limited. Many women are advised to have surgery to remove their uterus, known as a hysterectomy. And that means they'll no longer be able to have children. And we bring together three women to discuss the stigma they've experienced as a result. When I first told people that I had to have this done, they said, oh, won't it make you feel less of a woman?

2:39Lapita said she hoped that sharing her experiences would resonate with anyone who's ever felt dismissed, confused or alone. In fact, when we posted about it on the BBC World Service Facebook account, dozens of women shared their own stories of fibroids and their interactions with the medical profession, often far from positive. So let's hear from our first guest, who spoke to my colleague Mark Lowen during our daily live OS programme. Aparva is in Mumbai, India. Don is in Berkshire in the UK. And Satiria is in Maryland in the US. As you'll hear later in the conversation, she got to meet Lupita at a recent event.

3:16When I was 26, I was diagnosed with fibroids and immediately told to have a hysterectomy. And I thought that that was very odd, considering my young age and the fact that I didn't have children. And I launched a quest to try to find options which were very difficult to come by. I had horrible clots, pain, anemia where I lost half the blood in my body, gasping for air, trying to breathe because the anemia compromises your lung capacity and causes your heart to race very quickly. I really just had a very poor quality of life. I started suffering at the age of 14 so we go all the way back to my teenage years with very heavy painful period and when I went to see the doctor in the first instance he told me that that's just a period and that's what teenagers expected to have but as I went through my teenage years it got worse and worse until I discovered the pill which took away my periods but when I came off the pill in my 30s I was met with the most excruciatingly painful heavy clotting periods which took me aback and it was when I was 33 and started experiencing a very weird pain in my abdomen that caused me to go to the doctors and I got diagnosed with having two fibroids at four centimetres in size.

4:39I was told that they were very normal, very common and I shouldn't really worry about them, just take an ibuprofen and a hot water bottle and I'd be okay. I had heavy, painful, clotty periods where I was gushing blood, I had leg pain, back pain, I felt nauseous, I had a protruding belly, which was actually caused by a fibroid. Worst of all, I had infertility issues, which I didn't even know was caused by the fibroids because I didn't have any information on them. And for six years, I went back to my doctor to explain that I literally was living in pain and suffering each and every day. And he told me there was nothing to worry about.

5:16This is common. It's very normal. Just deal with the pain and suffering with ibuprofen, a hot water bottle. Sounds really terrible and debilitating. Apoorva, tell me what you suffered.

5:53is to manage the symptoms. Like if you're bleeding, then they'll give you pills for bleeding. So there is no really a treatment for fibroids. How do all three of you feel about the post-bilopita and this need to make people more aware of this condition? Apoorva, do you think that this is a necessary public information, a post to basically improve public information on this condition? Definitely, because there is little to no awareness about women's health, especially the reproductive system and there are very limited limited option in terms of treatments and a lot of people still don't know like for example birth control pills are given for this treatment to control bleeding correct so a lot of people still believe birth control pills is to control birth and not to balance your hormones so there are a lot of stigma in the society which is yet to be resolved a lot of awareness is still required so that people who are going through this or are in an initial stage of this would go through a proper diagnosis and proper treatment because most of them don't have symptoms.

7:01So it's definitely required to have awareness on these topics and have people to openly talk about these things. So here in the UK, two out of three women will develop at least one fibroid by the age of 50. And it's the most common gynecological conditions suffered here by women and yet it goes overlooked all the time so when we have someone who is in such you know big limelight the impact is so great and it just gets people open to the fact that oh my goodness I could be suffering with this the awareness is greater it's described with awareness month here now in July so for her to open up and speak now is doubly impactful as well what I have found with the work that I do women now want to speak up more and they want to offer their stories out to the masses to raise awareness and to make sure that we actually are doing something about the management of fibroids.

7:53I had the honor of sitting across the table from Lupita Nyong 'o yesterday on Capitol Hill when she shared her story and it resonated very deeply with everyone in the room, particularly members of Congress who have also suffered with uterine fibroids and there are treatment options. It's just that there are very few minimally invasive gynecologic surgeons to share and to offer those options, hence the enormously high SAD rate of hysterectomy, up to 300 ,000 hysterectomies per year in the United States due to uterine fibroids. But I'd also like to highlight that women of every single ethnicity get fibroids, and the severity of those symptoms is not specific to women of African descent.

8:42We reach 180 plus countries and out of those 180 countries, we see enormous diversity. We just don't have the data to really accurately depict the enormous impact of this health concern on the world. Tell us a bit more about what it was like when Lupita revealed what she'd been going through. Oh, it was so heartfelt. It was funny. We started sliding tissue boxes from one end of the table to the other. And it turned out that her surgery in 2014, when she won the Oscar, 2014 was my last and fourth surgery. 2014 was a myomectomy surgery for another person who was at the table. And so just the thought of, I think it's critical for your listeners to understand that a woman sitting across from you at work who's smiling and having a conversation may be dying inside, hemorrhaging, may be short of breath, may feel horrible.

9:41And society has taught us that we should not reveal that agony. And I started the Fibroid Foundation because I really would like, I don't want anyone else to have to suffer. And Lupita shared that same sentiment. She was lovely, absolutely lovely. That's great to hear. And Dawn, I know that you had initial problems falling pregnant with the condition, but you do have two kids now. So what would be your message to inspire people who are going through what you have suffered? my guidance for women out there is to seek second third even fourth opinions because sometimes you go to a doctor and like myself you get dismissed and you take whatever they say for gospel get that second third fourth opinion i'll also say read up on uterine fibroids it's so important to educate yourself because when you go into the doctor's office you've got this massive information that you can fire back if something doesn't feel right and also find support groups like i said i run one The guidance meet online, I do in-person events as well and look for information from trusted sources.

10:47So for me, I had a happy ending. I actually started out with what I thought was two fibroids, but they actually found 18 and 16 were removed. And the biggest is the size of a grapefruit. So I don't want anyone to suffer in the way that I did. Don, Aperva and Ceteria sharing their experiences of uterine fibroids and the lack of care and treatment they sometimes received. And you heard Sateria mention myomectomy, that's surgery to remove fibroids from the wall of the womb. According to the UK's National Health Service, it's considered an alternative to hysterectomy for those who would still like to have children.

11:22But it isn't suitable for all types of fibroids. I'm Iqra Farouk and you're listening to BBC OS Conversations from the BBC World Service.

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12:48I mentioned the huge response we got on our Facebook page from BBC listeners around the world to our posts on fibroids and we also received this voice note. Hi, this is Berta. I'm 37 years old and I come from Cuba and live in Italy. I've been dealing with fibroids since 2019 and I'm about to go through my third myomectomy, trying to protect as much as possible my uterus for a future pregnancy. This is not news for me because all of the women in my family back in Cuba have suffered of fibroids and have had hysterectomies after the diagnosis. But not having yet kids of my own, my situation is a bit more complicated.

13:25I've always suffered of pains and heavy loss, but I thought it was normal. It has also gave me pressure on my intestines and bladder and of course some intimated situations with my partner. The thing is that these are all quite private situations, so they're not evident to the rest of the world. I can do my job, hobbies, outdoor activities, gym, dance, etc. So people think that I'm healthy, but I don't feel that way. The other difficulty is the recurrent question of when are you having babies? It used to disturb me and I reacted ashamed, giving some lame excuse like someday or while thinking about it.

14:09Now I'm just giving back the shame to people and answer, I have a condition and my uterus is making it difficult to have babies. Then people realize how out of place that question was. I really hope to get rid of fibroids and be able to control their growth in order to become a mother. But especially, I hope it wasn't such a big deal for society, the fact that I'm almost 40 and I have no kids. Let's pick up on that last point from Berta about the stigma, for want of a better word, of not having kids. You know, in many cultures, women are expected to have children. But as we've heard, for women with fibroids, that's often not an option.

14:48For the good of their own health, many women are advised to have hysterectomies, which when you think about it, is life-changing surgery. So we brought together three Asian women who are all friends and have supported each other through their hysterectomies. Ningram is in Bangkok. She discovered she had multiple fibroids after giving birth to twins during an emergency caesarean section, and she later had her womb removed. Ima is in Singapore and had surgery after experiencing heavy blood loss as a result of fibroids. And Wulan is in Indonesia and had a hysterectomy after experiencing extreme pain from fibroids, which were the size of tennis balls.

15:25I had to carefully, gradually inform my mother about it. She was pretty much in denial, even after the surgery took place. it was not until approximately a few days after I came back home and when one of my cousins who visit was asking if it was a lot of pain etc and how was it feeling after the uterus is being removed etc it was only then she was able to register that the uterus was gone so she took it harder than me and in a way it was sending me a ripple effect because I needed her but for her it's like that's it doors has closed I'm the only child in the family and I have never given birth before and that was pretty much a lot for her to take in more to her than me so that was one of the thing that was made it harder for me because at the same time during the recovery, I have to deal with that reactions as well.

16:44But then one of my good friends was also reminded me, this was a reminder that I carried until today. I'm an educator. I've taught many students in my 15 years of teaching. And this friend reminded me that I may not have a biological child, but I have a lot of social, cultural, emotional children. This friend said, this might be the kind of connections that you should treasure. for me it was I think when I first told people that and mostly actually extended family that I had to have this done they say oh won't it make you feel less of a woman and that was actually one of the questions actually that was posed to me by someone and I was like I don't think the womb is the essence you know it's like you know how you feel how you show up as a woman and how you, you know, I'm a feminist.

17:49I actually work for women's rights and all of that and have been for many years. It didn't change how I behaved or, you know, it was an organ that was removed. And I think thankfully as well, I had the support of my mom because I'm the youngest of three and my two older sisters have amazing kids who I love dearly and are like my, I mean, for me, they're like my kids. They're my nephews and nieces, but I treat their other mother like I'm their aunt, but I treat them like my kids. And so I remember there was one time my mother and I were out with my nephews and nieces and she bumped into a friend and without even glancing at me, the woman said, oh, these are your grandkids.

18:33I was like, yeah. And she knew that they weren't my kids. They were from my sisters. This is an old friend. It's like, oh, you have two nephews and Denise's and my mother without skipping a beat, she says, yes, and that's all I need. And for me, it's like I was I was in tears after that at home. It's like, Mom, are you are you, you know, what you said earlier in the in the restaurant? Was that true? It's like, yeah, it's like, I know that this may not be your path. And this was even before I had this streptomy. So for me, being childless, in a way, by choice was something that was that I had already accepted.

19:05So when I had my hysterectomy, for me, it was an organ removal. Then it was the taking away of an opportunity to become a mother because I found other ways of, like Mulan, I found other ways of motherhood. I have four biological nephews and nieces, but I have so many. Ningrum's boys are like my own nephews, like my own blood nephews. So I was the first one to have the hysterectomy amongst the three of us. To be honest, even though I was so clueless at that time, I was really grateful with the friendship that I have with Mulan and Ima. Ima actually just finished her fellowship at that time in the U.S., in Connecticut, and she decided to come down to be with me and stay with me to help me recover from the hysterectomy.

20:00and um oh my god i'm gonna be a bit choked up here but but to me that was that was a huge support and i think for for you know creating this awareness is going to be really helpful with a lot of uh women and also men because it shift your mindset to be honest whatever from whatever cultural background that you are it's your body something is changing something that's that's not usual, I guess, commonly, right? And if you have that support, you have that conversation with your friends, your peeps, you know, that strong bond helps you to go through that. And for me, it was a huge help. And since then, I've had so many friends who went through the same thing talk to me about it and you know including imai and wulan we shared about that i always always always tell them many of my female friends especially who had gone through that that have that conversation with your partner have a good option to go to and then when you have the hysterectomy this is what what will change and be prepared for that because oftentimes Sometimes, at least for me, because it was so urgent, it was very quick.

21:27I could not, I did not have enough time to digest what that means after the hysterectomy. Yeah, I think for me, having a tribe, having a group of close friends that either have gone through it or just someone that's there to, you know, have like no barriers for conversation. it was very um helpful um for me to ask like really personal questions like what happened you know afterwards and all of that i i asked her you know and uh and all the different ways of do you remember that nigram you remember you remember him asking yeah i did yep even the embarrassing questions oh my god so many yes and to be honest i showed up with the other other friends too it's the embarrassing questions because when you're at the doctor office they give you all the medical stuff the medical terms they did not prepare you for the embarrassing stuff so yeah i think that was embarrassing because it's like you know who else can you ask about like hey what do you do when this happens you know um one of the most difficult time was when um going when about to enter the surgery i have issues uh with a low level of hemoglobin therefore i constantly need um blood transfusions and at that time i think um along with uh my husband ima uh and ningrum took over the communication to spread to our friends and families, relatives, and networks to search for blood donors.

23:23And I think they were very relentless on that. They went on WhatsApp groups of friends and families and on social medias, et cetera. And also, they were in direct contact with my husband. so that it felt really good to have that kind of support system. Know that you're not alone because, to be honest, I really don't know what to expect out of this. But, yes, they were there all the way. So, babes, thank you so much. I think after Ningrum and Ima, I know what sort of things that I'm going to have to go through. It's different for each of us, but again, it's a similar procedures. and it's really good to have Tagu and also two of my best friends there to help me back up along the way.

24:44Wulan in Indonesia, Ningrum in Bangkok and Ima in Singapore. Thank you so much to them for sharing their very personal stories of uterine fibroids. And I just wanted to end by sharing a couple of comments from our Facebook post too. Anne-Marie writes that so many of these stories echo with me. I'm pleased now to see information out there and people speaking out. And Joan says, society insists that females push through pain. They're framed as hysterics if they don't. This isn't just a women problem. It impacts productivity and families. To fight the good fight takes courage. I'm Iqra Farooq and you've been listening to the documentary from the BBC World Service.