The Dr Louise Newson Podcast - 124 - Menopause specialists advocating for women of colour with Dr Nneka Nwokolo and Dr Martina Toby

Episode Date: November 2, 2021

Dr Nneka Nwokolo and Dr Martina Toby are both consultant physicians in sexual health and HIV medicine, and together they have joined forces to help educate and advocate for women of colour experiencing perimenopause and menopause. In this episode, the experts share what prompted them to set up the ‘Shades of Menopause’ Instagram group and the benefits of using social media to support women of colour. Together with Dr Louise Newson, they discuss some of the socioeconomic and cultural factors, as well as gender inequalities that affect a woman’s experience of healthcare, and the unfortunate lack of research around use of HRT in women of colour. Nneka and Martina’s three tips to women of colour: Do your own research and ask other women about their experience See your GP for help. Ask who is the best person to see at your practice. Go equipped with knowledge already, and you will get a much better outcome. You are not alone, millions of women like you are going through it. If you feel you can’t speak up, find a friend who is willing to do it for you. Your voice matters and needs to be heard. Follow the podcast guests on Instagram @shadesofmenopause

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and well-being centre here in Stratford-Bron-Aven. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based information and advice about both the perimenopause and the menopause. So today on this week's podcast, I've actually got two guests rather than my usual one, which is doubly as exciting.

So I have Dr. Martina Toby, who is a GP and sexual health consultant, who's got a special interest in the menopause. And for the second time, actually, she's been a guest before, Dr. Neckenapola, who is a sexual health consultant, but also an HIV consultant who also specialises in menopause. So welcome both of you to the podcast this week. Thank you very much. So you've got a really interesting story, a really interesting connection and you're doing some great work together. So could you maybe, Martina, just explain a bit about the work that you're doing together and also why you're interested in the menopause, sexual health covers so much, but why are you interested

in the menopause specifically? Sure. So just a bit of background. Neck and I work together as sexual health and HIV consultants at health. We worked on quite a few projects there and got a really well. And when I left to do GP training, I spoke to NECA and we were talking about menopause and she was telling me that she was doing menopause training and how exciting it was, which got me really excited. And I started to do the menopause training as well at guys in St. Thomas's. And to me, it was one of the most rewarding parts of medicine that I've come across because, you know, the women come in, they're angry, they're irritable, you know, their lives are really becoming quite unlivable with these menopausal symptoms.

And with a bit of treatment, we can restore them to, you know, what they were before. You know, their families appreciate everything. And you can really see the benefit of work you do with these women. So Neck and I, we were invited to do a forum for women of color last year, October. And we had about 30 to 50 people, all women of color, listening to us. You know, we were just talking about menopausal experiences. And the sort of ubiquitous view was just that they were all not listened to, No one understood them.

They felt like their doctors didn't really care about them. And they were so grateful to have sort of menopause specialists of color talking to them and, you know, they could share their experience with other women of color. And after that, we decided to form a group called Shades of Manipause. So we do a lot of work on Instagram where we sort of cater towards women of color. But to be honest, we provide medical social education for all women, but we sort of advocate for women of color. and so far it's been an amazing experience.

We're getting great feedback from our members. And yeah, that's where we are today so far. Which is great, isn't it? Because I think we've already spoken many times before about this on the podcast, and I know I've spoken to you, NECA, about it, about how all women are often neglected. You know, we know we've got evidence-based treatment that the minority of women worldwide are receiving.

And I can't think of any other area in medicine where it's so difficult to access evidence-based treatment. And I remember going to a conference a few years ago now and somebody talking about HIV, actually, and how it affects people in the menopause. And as you know, we've written a booklet together available for women who've had HIV, who are menopausal. And those women are really neglected.

Women who have cancer are really neglected. Women who have migraines are really neglected. Women in general seem to be really neglected. And actually, as you quite rightly say, women have kind of often neglected as well. And so this is such an important space. So what's been the most rewarding thing you've done up to now, Necker, within this group? I think, actually, the most rewarding thing came from the forum that Martina and I did that she just mentioned,

in which a woman started to cry just because this was the first time she'd ever been able to speak about what she was going through. And I remember after it, Martina and I said almost in unison, this is the reason that we need to do this. And since then, we've had such good feelings. I mean, you know, I talk to you. I mean, I ask your advice about our Instagram because we are not, you know, at all Instagram savvy. But we've learned a lot. And in fact, we've had feedback from lots and lots of people, women of color, women, not of color, men who've looked at the site saying how engaging it is. I mean, I think we still have a lot to do. But there are a lot of people engaged in this. And there are comments about the fact that

they're glad that there is a space for women of color to speak and to be heard and so on. So, yeah, hopefully it's resonating. Well, totally. And I think Instagram's actually a really powerful platform. Last night, it was down for about five hours. And I think we all had loads more time to do other things. But actually, I started my Instagram a few years ago, just because I wanted to stalk my teenage children, actually.

I wanted to see what they were doing. And then one of my daughters, Jessica, said to me, oh, you need to just start posting every day. I was like, oh, really? Okay. And it's just sort of morphed. But actually, occasionally get some crazy. criticism, but most of the time it's really supportive and people really find it very comfortable

place because it's not, Twitter can be quite shouting really, I think sometimes, whereas Instagram isn't. And what I've noticed more and more over the last years that a lot of women are helping each other and supporting each other. And in fact, yesterday I got a very negative comment by a healthcare profession actually and I just left it for a bit. And actually I was looking last night, I know about 26 comments. So there were other. people sticking up for what I do and supporting me, but supporting other women in this space. And I think that's really important, isn't it? Because if you're a woman alone and you don't know who to talk to and maybe you haven't got a supportive network of friends or family,

then how do you really feel that you're getting the right support? And there are a lot more Facebook groups now, but I get quite scared of Facebook actually. I'll never go on it. So I think having a space where you feel that you're getting a bit of. the right information. And I think also, I don't know what you both think, but being a healthcare professional is a great privilege, obviously. I'm sure you both agree with that. But also, I really want to impart my knowledge. I don't want to just give my knowledge to my patients that come in. I want anyone to have my knowledge. I'm not possessive over it. But I think people find it quite reassuring that we are medics as well. I don't know what you think. No, absolutely.

I think it gives them the reassurance that the information we're giving out is valid and evidence-based. and I think particularly for women of colour who are skeptical about, you know, the healthcare system, particularly, you know, in the US for good reason, just seeing a physician of colour speaking, seeing this information is very reassuring and it maybe help them come forward and get the treatment they need. Yeah, I think that's so important, is it? I remember a few years ago seeing a lady who was actually married to a doctor and he was desperate for her to get better. He was so worried about her. So I remember having a consultation with her.

and she is a black lady and she's an architect actually and she'd been struggling with really bad migraines for about four or five years and become a shell of herself because of her menopause and I was talking to her about the patches and gels that are very safe for women of migraine and she was really quite angry with me and she said but how do you know they will work on my skin how do you know because there's no research

and I said but the skin is just used as a vehicle for getting it into your bloodstream but you don't know you don't know it's going to work and it was the first time I'd felt really quite uncomfortable because I didn't have the right language and I didn't have the right research to back me, but then my understanding is skin is skin anyway. And actually it doesn't really matter. But for her, it was a real, and because I was a white woman telling her, she got, how would you ever understand that?

And I found that really quite difficult. I don't know what your thoughts are about that sort of conversation. I mean, I think that it's not an uncommon conversation. I think that we do have to do some more to create an understanding of what the differences potentially are, but also the similarity. There are more similarities than differences. And there's no biological reason that absorption through darker skin should be any different to absorption through lighter skin. However, we do know that there are certain medical conditions and certain things in physiology that may differ from one racial group to another.

but there are very, very few of those things. So I think it's kind of about saying, yes, there may be differences, but there aren't always differences. And the thing about HRT is, I mean, and you, I think, agree with this, it's often a case of try it and see. Because, you know, when you start a person on HRT, there's no guarantee that the preparation you use at the beginning will be the right one.

And it's often a case of trial and error. And so it should be, I think, the same for everybody who you're recommending it to. Absolutely. You know, I see lots of people whose patches are just not sticking, they're dropping off, or the gel just floats on their skin and doesn't absorb. And that's nothing to do with the colour of their skin. It's just the texture of their skin is very different. And that's what's great is that we have choices, haven't we?

And I think that's what's really important is by sharing the choices with women and letting them decide and be part of that decision-making process. I think it also highlights the fact that there's no research to support what we've just discussed. You know, we really need more studies involving women of colour. You know, so we have answers to these questions that they are asking. Absolutely. And I think the problem is I'm actually doing a talk later this week about gender inequality. And, you know, there's very little good quality evidence for women in general, actually.

When you look at so many drug doses, not this isn't HRT, but this is general. it's very difficult to translate and see. My husband had his COVID's third vaccine yesterday and he's feeling all feverish and not very well today. But I was thinking about this vaccine. You know, so many more has been done on men. It's very little. So it's very difficult.

And I know Nekha and I was speaking to a dermatologist, I know, Sadrashpar, about doing some research about absorption through skin types. And I think this will be really interesting. So there's certainly a lot to pursue. But actually, the menopause is a hormone, deficiency for all women, isn't it? We don't know enough about symptoms, whether we know that symptoms change for different women at different times and also everybody's experience is very individual.

There has been quite a lot about whether Japanese women experience venerples in the same way or whether diets can affect, and I'm sure they do. We know they do. But I think, you know, does a black woman have a different experience than a white woman? And again, that's very difficult to know because everyone's experience is so different. But I think what I'm trying to get across with a lot of my work is it being a hormone deficiency with health risks. And I'm sure I hope you both agree that the health risks are the same regardless of where the woman is from. Yeah, no. And I think that's really well said. I mean, the other thing also about thinking about the experiences of women from different racial backgrounds is that there are so many factors that affect

the experience of menopause. And when you look at studies from the United States, States, which is probably the place where the majority of studies are done. First of all, the proportions of black women in these studies is usually quite small. But secondly, the experiences of black women in the United States are very different to the experiences of white women in the United States. And there are so many socio-economic and socio-cultural factors that might affect their experience, which might actually not necessarily be to do with biology. I think we don't know enough. So you have this big nebulous concept called the black woman. But black women in the United States are not necessarily the same as black women from African countries.

And there isn't a lot of research that comes out of countries in sub-Saharan Africa about the menopause. So I think it's really hard to know. But as you say, the outcomes, you know, with regard to the health outcomes associated with the menopause, are uniformly poor. And if they are worse in black women, which I'm not sure that we necessarily know the answer to this, is this because of the racial disparities that you're going to be talking about? because we know that health outcomes for black women, for example, in the UK, are really bad across the board. I don't know that anyone's done any research to tease out the comorbidities that are associated with aging and the menopause, but we know that across the board, those outcomes are worse, may be associated with socioeconomics,

but we know that when you look at some studies, actually, black women of higher socioeconomic status do still have some of those poor outcomes. So what are the causes of those? We need more research, as you've both said, I think. Absolutely. And we know that estrogen is very important to reduce inflammation in the body. And if you've got low-grade inflammation in the body, then you've got an increased risk of heart disease, diabetes, osteoporosis, clinical depression, everything else as well.

So there are real risk, but also there are sort of barriers for receiving the right treatment. Some of it is, obviously, we know about training for healthcare professionals, lack of accessibility to menopause clinics often. But also, I think there is sort of. psychological barriers as well and what the menopause means to different people. You know, for some people, I mean, I know we spoke before on the podcast about women living with HIV. For some women, it was a real achievement reaching the menopause because it means that

they've reached a certain age, which is great. They've also could be quite liberated that they're not menstruating. And most of us are very happy not having periods. But actually, for some women, it's a real marker of loss of fertility. And in some cultures, that's huge, isn't it? Yeah. I was reading something recently about South African women. You know, there are lots of different ethnic groups in South African,

but they did a survey of rural South African women. And for some women, it was not necessarily a good thing because, you know, there's this idea that bleeding cleanses you in some cultures. And so there was some thought that the blood was all building up. And so such a person was unclean. But for other cultures, actually, the loss of bleeding meant that women were now clean and could go to the fields and not contaminate the crop. So there's a whole spectrum of thoughts and superstitions about what the menopause means. I also think in some cultures,

once they stop menstruating, stop being fertile. Someone feel they lose their benefit to society. You know, they're no longer important. They can't bear children. And I think a lot of women struggle with that. I think so. And I think that's really interesting because we know that the psychological impact of the menopause is huge. The effect of hormones in our brains is huge. And there's a lot of women out there who think it's the concept of the menopause that's affecting their mental state. So they will be worried, like you say, about this lack of identity. I've got no sense of worth and worthless. I've got no sense of purpose. You know, what's point of me being here? I'm very low. Life isn't worth living, really. I'm not enjoying life. And they think that's

because they are menopausal for the reasons we mentioned. Actually, what they're not doing and no one's telling them that the low hormones are making them feel like this, actually. And if they then replace their hormones, they will then feel better. And then it's all about trying to turn it into a very positive experience. Because certainly when I travel or certainly before COVID, travel aboard some countries, you just never see women on the streets. And you never see women who are older. You see lots of young women pushing prams or whatever.

And I think, well, where are all the menopoles are women? Where are they? And so many cultures, they're just hiding at home. And then I also think about vaginal dryness, we know it affects about 80% of women. There are a lot of women that come in here into my clinic and tell me that having sexual intercourse is so painful. It's like having a red hot poker shoved inside

and they're crying in pain that they just know their husband needs intercourse or needs sex, which is really sad for me to listen to. But these are the ones that I hear. There must be loads behind closed doors where they can't resume a relationship or they're forced to. And that really horrifies me. I don't know what you think.

But, you know, and I was also doing some work at the moment with a few people who have undergone female genital mutilation and they've been very open about their experience, but a lot of the scars they have become a lot worse during the menopause as the tissue things. And that has a lot of psychological impact, obviously, reminding them of what they've been through, but actually for a physical relationship.

And so there's all these things that a few years ago I'd never thought about before. And it's just like these layers of an onion and just keep unpealing. And that is affecting more women of colour because they're more likely to have FGM, aren't they? They all being cut in certain ways. And then there's this whole area of trans men

who no one ever talks about. And what are their experiences? Yeah. It's very interesting. I was working with a researcher a while ago who's a female now but was born as male and she had a clotting disorder. So she physically turned into a female,

but no one would give her female hormones because they were worried about clot risk, and she had to do a lot of research herself. She managed to get hold of some gel, which doesn't have a risk of clot, and gave herself the right dose. And she emailed me out the blue one evening, actually, to tell me all about she would be doing this high-level research. And then she just emailed me to tell me about her whole experience. And I thought, goodness me, this is, again, another level of people who are neglected, who I just hadn't really sadly thought about, because I don't know about YouTube, but all these things, Wouldn't it be great to have learned about this in medical school?

Because some of them, there's no right or wrong for a lot of these answers. But, you know, really interesting concepts that I wish that seed had been planted in the 90s when I was a medical student. Not, you know, 30 years later. Neglected so many stories that I could have really, you know, doing psychiatry. I wish I'd just had more sensitivity and passion, really, to help these people. But I suppose what's good about now is, and I think probably one of the, the reasons that we didn't learn very much or didn't know anything about that was because people who were experiencing all these things didn't have the courage to speak up

because they didn't think that they'd be hurt. You know, the thing that you just said about the trans man who had to find their own hormones, you know, the fact that a person has to figure out what to do by themselves without any support is just awful, isn't it? But you have to, yeah, you have to sort yourself out because you can't find anyone to help you. And I think the thing is for a lot of time women are trying to get help, but then they're not being listened to. And I don't know what you both think, whether it affected men, whether they would be ignored in the same. Yeah, I know.

It's a good point. I mean, who knows. I mean, men do neglect their health. Because they do. But you have to think that there may be a truth to that, particularly with, you know, the issue of cardiovascular disease in women. You know, no one ever thinks about, you know, women are less likely to be diagnosed, is likely to die if they have a heart attack. Their symptoms are not recognised. Everyone knows what the characteristics of a heart attack in a manner. Yes, exactly. I think, you know, we hear from

women, particularly women of colour, who, for them, it's so taboo to talk about the menopause in the first place. So for them to come forward, to see their GP, it takes a lot of courage. And then they just get so knocked back and disheartened when they feel like, and maybe this is just their perception, they feel like they aren't listened to and that the GP didn't take them. seriously or understand them. So what we've been trying to sort of coach them into doing is do their research beforehand, you know, try and have a look at your website, Louise. You know, there's so much good information out there on the internet for them to access. And speak to the GP receptionist, ask them who is, you know, the doctor who's most interested in menopause, who they're most likely to

get a good outcome from. And then try and encourage them to see that person with the information that they know of and hopefully they can get a better outcome. And I think that's so, important, isn't it? I mean, you know, I feel as a doctor, I'm really here to listen and, well, the consultation according to what the person wants who comes to see me. But I really feel more and more that the patients have to be empowered with information. So if someone's come in and I'm a GP and someone's got raised blood pressure, it's so much easier if they know that there are risks with a raised blood pressure. Some of them know the side effects of different medication. They've read about it. And they're asking what their cholesterol is and they're talking about weight

that's a really great consultation. As if you say someone, you've got raised blood pressure, what does that mean? What blood pressure? You're like, oh, my goodness, that's going to take a bit longer. And the metaphors is no different, actually, because if women are empowered, you know, they come to the consultation armed with information.

Yeah. And then in 10 minutes, the GP, you can still get through a lot, can't you? Because you're not having to give them all that information. So I feel like you're absolutely right for them to be empowered to try and seek out. But I think if they don't get the help the first, time rather than what's happening a lot is that they feel really deflated and think that's it.

Actually try and reflect and even write to the doctor or say to the doctor, look, this hasn't gone the way that I'd expected. What do you suggest I do? And what I've sometimes done, if I've frustrated about something in a shop or whatever and there's something that's not right, I often say to the shop, he says, what would you do if you were in my situation? Because that's the thing, because you're talking to the expert then, aren't you? And you can say, and then actually they'll say, well, actually, no, I would take this

back if it's broken or whatever. And the same with this, you know, I think it's not unreasonable to say to a healthcare profession, what would you do? In my situation, I'm clearly menopausal, I've got these symptoms. I would like this treatment. Then I think that wouldn't be an unreasonable thing, don't you think? That would I think be the ideal situation. But I think we mustn't forget that many of these women have had really adverse relationships or adverse interactions with health care professionals so that they don't start out even thinking that they can challenge. I'll tell you a story that I haven't told anybody about me.

And, you know, I am not a shy and retiring type, as you know. No, you're not. But I, you know, I can relate to some of this. I had to have an ultrasound at a hospital in London, a transvaginal ultrasound. So I went into the room and I lay on the couch. The radiologist, the consultant was in the room and she was supervising a trainee. So I went in there. I said, hello.

She said, can you lie on the couch? I did. The registrar came. in. The consultant was sitting there. First of all, I was left to just lie there for half an hour. I kid you not. The consultant not acknowledging me at all. The registrar did the scan and had a bit of trouble. So asked the consultant to come over. The consultant came over. Open your legs, dear. To shuffle down, dear. And it was just the most horrible, humiliating experience. But at the end of it, I said, I'd just like to let you know that I'm a doctor and I'm

going to file a formal complaint about you. And I wrote to the chief executive of the hospital and I said this was my experience. And the chief executive replied that night. And the gynecologist who had referred me clearly had had that communication and phoned me. If I had been some shy and retiring woman, I would not have done that. And that woman would have had no idea. And I don't know. Maybe she treats everybody like that.

I don't know. But I suspect she doesn't. I mean, I don't know. But that was my experience. And if I'd been a shy and retiring type, I don't know. First of all, I would have thought twice about going back to an appointment like that, and I certainly wouldn't have challenged. No, it's very difficult, isn't it? And, you know, I've been in some very difficult times as a patient. I had another story that, you know, probably haven't really shared in any before, but I had a catheter to put in not long ago after a hysterectomy.

And the nurse, I knew it was going to go wrong. You can just tell me, someone's not confident. And I was in so much pain. And she did this catheter, and she inflated the balloon in my urethum. through and you have a balloon to stop it coming out. And I knew she hadn't pushed it in far enough. And yeah, my eyes are watering, thinking about the pain. So I was pressing on the buzzer and it took ages for her to come. I was in a private room and I couldn't move because I was in so much pain. She finally came and I said, you put it in the wrong place. She said, no, I haven't, dear, you're fine. And I went, no, give me the syringe. I'm going to deflate the balloon and take it out myself. She said, that's very dramatic. I said, I don't care.

Give it to me. Anyway, what she didn't know is my husband's a urologist. And also, she didn't know that I knew the consultant who did my operation and I text him and said, can you come in and put the catheter in, I can't go near and the nurse again. So he came in and did it beautifully. And that was really difficult, but we put in a complaint actually because I didn't want other women to suffer and we got such a defensive letter back because they didn't believe us. And I thought, this is just awful, actually. Why would I make this up? And all we asked for, well, in fact, my husband wrote it as a urologist to say that this nurse clearly needed more training. And that wasn't a fault of hers. It was just, you know, to stop that suffering for women.

And I thought, goodness me, if I hadn't known, they would have given me pain killers. They would have run there, never mind. You will be in pain, you've had an operation. And it's very degrading, especially when it's down in your pelvic area. You know, if it was my arm that was sore, it would be one thing. But it shouldn't be like that. I totally agree. It's also just about humanity, you know, and this has not, you know, okay, so you're a right woman and you had that experience. I'm a black woman. I had that experience. And I have no evidence to suggest that she treated me the way she did because I'm black. But what's clear, I think, about both of our experiences is the lack of humanity of both of those people. And I always say, and I'm sure you're

the same, you know, when you speak to medical students, you need to think about this person in front of you as if they were you. Because if you would not do this to you or if you would not like someone to do this to you, how dare you do it to somebody else? And it's all about human. And it's all about humanity, I think. I think so. And I think that's so important because when you're ill, you're very vulnerable and when you're not sure and you're scared, it just can be overwhelming, actually. So I think having a safe group and having an area where you feel you can express how you feel. And like you say, whether it's because you're black or whether it's because you're white or whether it's because you're just a person that's not being heard, it doesn't really matter.

but it's having the right support is really key. So then you can move forward. And certainly the work that you both are doing with your Instagram account is amazing. And we'll put links at the bottom, obviously, of the show notes. And the more that we can talk, the more we can work together to help more women, the better future health will be, which is what we want at the end of the day. So I'm very grateful for you being so open. I should really open about your experiences.

And I really hope that people will listen and obviously join your community more and the more we can work together is amazing. So just before we finish, I always ask for three take-home tips, but that's going to be a bit hard because you're going to have to do one and a half each. And I can't be so surprised. Because you're so shocked,

and you have done them before, actually. I'm going to ask for one from you and two from Martina. So I just really wanted to ask you for three tips for women of colour who are struggling what you would suggest that they would do to try and get help and feel supported. So, Martina, if you do your two first, in the neck, can round it up with her phone or one.

So I would say the first thing to do is do your own research. There are lots of resources on Instagram. There's lots on just the general internet. Have a look, have a read. Ask other women their experiences. The second thing I would say is please, please, please approach your GP. Speak to the receptionist. Find out who is the GP that deals with menopause?

Who is the best person you should speak to? And come equipped with your knowledge. And you'll get a much better outcome. way. And from me, I would say you're not alone. There are millions and millions of women in the same situation as you are. And if you feel that you can't speak, find a friend who you know can speak and let that person advocate for you because it's really important that your voice is heard. That's really good. I think that's so important. No one should feel alone in any of this, especially in the menopause. So I'm really grateful for both your time and I look forward to seeing what we can

do together in the future to make a bigger noise. So thanks ever so much. Thank you. Thanks very much. For more information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com or you can download the free balance app, which is available to download from the app store or from Google Play.