The Dr Louise Newson Podcast - 272 - My hysterectomy story: here’s what I wish I'd known

Episode Date: September 3, 2024

Joining Dr Louise on this week’s podcast is Melanie Verwoerd, political analyst, former member of parliament for the South African ANC party under Nelson Mandela, and former South African ambassador to Ireland. In this episode, Melanie shares her experience of radical hysterectomy, and her shock at just how little information is available to women before their operation. She tells Dr Louise how she is on a mission to close the information gap by chronicling her experiences in a book, Never Waste a Good Hysterectomy, followed by a podcast series of the same name. Dr Louise also shares her own experience of a having a hysterectomy, and together with Melanie offers advice to women who are preparing for surgery on what to expect. Click here to find out more about Newson Health.

Hello, I'm Dr Louise Newsom. I'm a GP and menopause specialist and I'm also the founder of the Newsom Health Menopause and Wellbeing Centre here in Stratford-Pon-Avon. I'm also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research,

bust myths on menopause symptoms and treatments, and often share moving and. and always inspirational personal stories. This podcast is brought to you by the Newsome Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So today on the podcast I've got someone called Melanie Furwood, who actually is from South Africa,

and I don't think I've interviewed someone who's been in South Africa before. So this is a first, Melanie. Hello, lovely. And hello from Cape Town. Yeah. So you reached out to me and you've written a book, which we'll talk about, but it's about knowledge showing. A lot of the work that I do, many people realise, is about sharing information, sharing knowledge so as individuals, we can decide what's right for us. So tell us a bit about you and we'll talk a bit more in a lot of detail about hysterectomy, the operation to remove a woman's womb.

So if you don't mind just saying a bit more about you, if that's okay. Yeah, thank you so much for having me. It's lovely to do. speak to you and to all your listeners. And thank you for what you do for all us women all around the world. So I don't come from a medical background. Actually, I have a political background. I was a member of Parliament in South Africa with Nelson Mandela. And between our transition, 1994 to 2001, I then became South Africa's ambassador to Ireland.

Did that for four and a half years. Then became executive director of UNICEF in Ireland and then came back. So my day job, I'm a political analyst and I also write for newspapers. But in the middle of 2021, so during the COVID time still, I went for a regular gynecological checkup. And during, you know, I was lying there on my back and the gynecologist was doing an ultrasound and we were chatting away with our mothers. You know how it is.

You always talk as much as you can when you're having a gynecological examination just to not concentrate on what's happening down there. And she suddenly went very quiet and just shed what's going on here. And then the whole atmosphere in the room changed. You know, it's like I think anybody who's ever had bad news from a medical doctor knows what I'm talking about and said, look, can you quickly run up and go and have some blood tests on? And I said, sure, but what are you looking for? And she said, well, cancer, I can see a huge ovarian growth.

And it, I mean, it really shocked me because I had zero symptoms. And also I'd been perfectly well. And I have gone for gynecological checkups every year and there was nothing the previous year. And then, yeah, then I got on this. very fast-moving train of medical tests and CT scans and seeing more specialists. And a week later, a radical hysterectomy. We can talk about the terminology, of course, was performed. And that then put me on this whole journey, which resulted in the book and eventually also in a podcast, because I realized just how many women go through this procedure and yet there's

such a lack of information and support. And how old were you when you had the operation, if you don't mind me asking? Not at all. I was 54. So I was lucky in this. sense that I had largely gone through menopause. In fact, the day that I went to the gynecologist was a year after my last period. So I was officially in menopause. So in that sense, for me having the ovaries removed, of course, there's always still some latent hormones presence, you know, and I did have again menopausal symptoms, you know, again flushed a bit and felt very down, which could have also just been the operation. But so I was lucky in the sense that I wasn't put into surgical menopause. I think that is an additional nightmare on top of everything else when you get

such a big operation. Yes. So, I mean, a hysterectomy is just removal of the wound, which is what it is, but like you say, there are different types of hysterectomy actually. So a simple hysterectomy is literally just removing the womb. But it can be done. There's also a subtotal hysterectomy, which means that the womb is removed, but the cervix still. remains. And 20 or so years ago, it used to be very common operation because they thought that there was more stimulation and certainly for penetrative sex. It was more pleasurable for the woman to keep the cervix. But actually, there's not really been good studies about that. Some people think that they're more likely to have a prolapse if they don't or do remove the

cervix. But again, it's not really so. So few people, for various reasons, might still have their cervix remaining and have a subtotal hysterectomy. And that's important to. And that's important to know, obviously, because you want to know have you still got your cervix if you need to have cervical screening or whatever. So, but essentially a simple hysterectomy is just removing the womb. And then we also often talk about T-A-H and B-S-O, because in medicine we love having abbreviations, lots of letters in people's notes. But that means total abdominal hysterectomy, which means the operations through the tummy as a cutting the tummy and removal of both ovaries. But that can also be done in a vaginal way as well.

So quite a few people only have their womb removed. Some people have the womb and their ovaries removed. And then you had more removed, didn't you? Yeah, I had everything removed. So as I understand it, and it might differ from country to country, but from what I understand is that if they sit with a big ovarian growth, and mine ended up being the long end of a credit card, so the circumference, you know, it was like that.

They are worried, first of all, of doing it vaginal leg or laparoscopically because they do not want any part of the tumor to chip off, you know, if there is a possibility of cancer. So they usually then do an abdominal hysterectomy. And because in my case, I wasn't 100% sure that they could do the lab test in the theater, they then did a preemptive radical hysterectomy. So then removed, as you said, the womb, of course, the ovaries, the cervix, some of the ligaments, and then also the sort of fatty tissue, the omenum, they call it the fatty tissue or curtain that hangs over your organs because I was told and you can correct me, but that's often

where especially ovarian cancer tumors like to go and hide. So it was a fairly radical operation and thankfully not all women go through such a radical hysterectomy. And of course, particularly because it has an abdominal wound that took very, very long to recover from. And I think that was partly why it was so important for me to do the knowledge sharing was because just before the operation, I tried to get books, you know, to read. I'm a brainy person.

I like reading stuff to be prepared and be in control, you know. And I couldn't really find anything around hysterectomies. I could find medical journals, but that wasn't helping me at all to prepare. And then post the operation, I started looking also for, you know, information online and so on. And then I discovered all these huge Facebook groups of women who had gone through hysterectomies. Often it's linked very closely, of course, to menopause because it's often women who are sort of in that period of their lives and who was so frustrated, so anxious, many of them also in their NHS because they felt that they got no support and no information. And they were asking each other, which is nice, but of course not the most reliable when you want to get medical information. So, you know, there was one example I remember where somebody said, went onto the group and said,

I am eight days post hysterectomy. I just had a big bleed, big blood clots all over my kitchen floor. What do you guys think should I go to a hospital? Is this normal or not? And of course, you want to shout, don't come onto a group, you know, please, please, please just get yourself to emergency. But that sort of was an illustration for me. And these groups are everywhere in the world. They're not just South Africa.

In fact, South Africa is a very small group. but Australia, the UK, America, in Europe, everywhere. Because, you know, you said it was a fairly common procedure, but it still remains a very common procedure. You know, in America alone, 600,000 hysterectomies every year. And I think still many doctors very unwisely, I want to almost venture in say particularly male doctors, when women go into menopause and they experience sometimes menopausal symptoms

or any other legitimate gynecological, this becomes the operation that they turn to. And yes, in some cases it is needed and it's life improving and it is life saving in many cases. But I don't think it's an operation that should be done easily and as the sort of easy option to deal with menopausal symptoms. And that's been sort of part of my little activism now is to say, just make it a last resort, not the first resort, if women start struggling in middle age. Yeah, it's really interesting. So I did, when I trained to be a GP, done a lot of hospital medicine, so I didn't have to do lots of jobs to become a GP. The only job I had to do was an obs and guiney job. And that was a long time ago. That was in 1999. And there were lots

of women who, in retrospect, were middle-aged women, menopausal or perimenopausal, who were having heavy periods. Marina coil wasn't really, it was only just sort of coming out then. And so a lot of people had a hysterectomy for that. And I just thought, gosh, you're having an operation. But in a couple of years time, your periods will be stopped. So anyway, but also as a doctor, we see people when they're operated on, you know, in the hospital. And when we do a six-week check quite often. Right. And I, you know, and I've done this a lot as a GP, you know, you see babies six weeks old, the mothers for a six-week check. So you don't realize the enormity of what's happened in that six weeks. And then my mother had a hip, well, she's had both hip replacements now, and I looked

after her. And I've seen women three to six months after a hip replacement. They've been no They feel of pain, but they come into the surgery. We'll review everything. But day one after a hip replacement, oh my goodness. And then seeing the bruising down my mother's leg and the pain she was in. And I was thinking, gosh, I had no idea how awful it was because the body heals quite well. And then I had a hysterectomy a few years ago and it was a simple hysterectomy and it was done vaginally. But oh my goodness, those first few weeks, I wasn't expecting because I think as doctors, we're not trained because. we don't see day by day and people get discharged day two now often after an operation, don't they?

Exactly. We're not seeing and learning, but I learn all the time from two things. My experience is, if I have them, but also from what patients tell me. So what you've done is allowed people to discuss because we are different, aren't me, but it is still a big operation. I know that some women, especially when they've had vaginal or laparoscopic and it's a simple hysterectomy. They seem to bounce back. Many women do quite quickly. But the vast majority of women that I have spoken to and mates, and I speak in many places now on these issues in women and

medicine and so on. And the vast majority of them sit there in tears, you know, and write to me just for once that somebody gave validation to their experiences. And, you know, they, I mean, I understand that doctors are busy and especially surgeons on specialists or I don't know if you call them consultants in Britain, they are very busy. So they, once they've saved your life or stitched you back up, that's it. They're done. You know, that's job done. But of course, for you, the process only starts then, right? And I'll never forget my surgeon said to me beforehand, week one, you'll be in bed, week two, you'll be on the couch and week three, you'll might be in the kitchen again. I objected as a feminist to the last observation. But the

point was, in his mind, I should have been back doing what I do by week three. There was nothing like that. I mean, and I'm tough and I've gone through lots of medical things. So this was nothing like anything I've previously experienced. And it took, I would say, about three months before I felt closer to myself. And the point was I wasn't healed completely. There was still pain and discomfort and energy issues for at least six months and maybe even a few months after that. And I think even if we just get permission to know that it's really hard. And then, of course you don't even talk about the psychological stuff because I think there's a lot of psychological stuff that goes with it. I was not prepared for how long it was going to take. I was also not prepared

that it was quite important to speak to pelvic floor experts, you know, that it might impact, you know, on your sexual activity. None of that I was prepared for. And I think then it comes as a big shock and it's on top of them. And of course, then women who go through surgical menopause and are not prepared for that and not helped with medication or, you know, therapies through that, I think that's just cruel. I think that's, in a way, I want to almost describe it as evil because what they go through is how. Yeah, I spoke to one of my patients today who's had breast cancer many years ago. She's young, though. She's still in her mid-40s, but she had breast cancer when she was in her 20s. Eastern receptor negative. She's had bilateral mastectomy, but she's found to have the

Brachene. So she's having her ovaries removed to, you know, obviously negate her risk of ovarian cancer, but she's still having periods. And she really wants to have hormones to replace the ones that she's missing because she gets PMS already and she knows she's going to feel worse without her. And I spoke to her today because she's now got a date for her operation. And the consultant has said, let's just see how you get on without your ovaries. And I said, you know, and they're sort of worried because she's had this history of breast cancer. She's had her own periods for 20 years. Right.

So actually that makes it a lot easier to think about hormone replacement therapy. And she wants it as well. You know, she knows her mental health before her periods is terrible. So she's quite rightly worrying about that after the surgery and the health risks of not having hormones for her bones, heart and brain and so forth. But to say, see how you get on, I think it just makes me a bit upset. I can't tell you how many stories like that I've heard. And I was recently contacted by the mother of somebody.

in her late 30s who had had a radical hysterectomy. And she said to me that she was deeply worried. I didn't know her. She just reached out to me via my website and said that she was deeply worried about her daughter's state of health, but also mental health. And he asked if I would talk to her. And of course I said I would, but we need to refer her to a medical expert. And then when I spoke to, she said exactly the same thing.

The doctor said, you know, when she was released from hospital, you might start feeling a little bit off in the next day or two because, you know, you've gone into surgical menopause. but come see me in six weeks time and we'll see how you get on, you know. And she said during those six weeks, because she didn't know what was happening to her. She thought it was, you know, she didn't understand why she was feeling so awful. And then she said to me, before the operation, course, hers was done because of cervical cancer, she was scared that she was going to die.

Then after the operation, she got scared that she wasn't going to die because of the impact of. And I think for me, the thing is your patient seems to have done the right thing and that's coming to you. but it is also sort of as women to start taking control of our health, you know, to also insist and not take, you know, the word of one doctor. I think it's really important then to reach out, go find the help if you have time to do it before the operation already, and then after the operation, if you're not doing well, to reach out for help. And it's not because you're weak. I think we often think we're weak. It's because you need, legitimately need help. You're absolutely right. My consultant it was brilliant because he said to me, each day you do a minute and then you double it. So you do

one minute walking, then two minutes, then four minutes and eight minutes. And I thought, look, do you know what, I'm really fit. That's ridiculous. But I took it literally because I really wanted to feel better. But actually some days I found it really easy and some days I found it really, really, really difficult. And I think there's two things really for me that I was not expecting so much because I didn't have a scar because it was done vaguely. So you look down and you think, have I really had an operation? And so I think women forget that internally you have had an operation. But the two things really was my pelvic floor. I do a lot of yoga. I do a lot of pelvic floor exercises. I couldn't even feel the muscles. Like I tried to tighten them, you know,

as you do, you know, to do perhaps. I was like, I don't even know where they are. Have I got them? And I knew I do, of course. So looking at that, but also like not being worried that you can't do it straight away. A lot of women, even if they're on HRT before the operation, or they're having their own hormones, often need vaginal hormones. Yes. And things have settled down, which is very different to HRT. And that's really important because if you're, and we talk a lot about sarcopena, this loss of muscle mass that occurs in the menopause. Well, you have sarcopenaeia of your pelvic floor muscles as well. So we can all do our pelvic floor muscles as many times as we can. But there's no point doing them if you haven't got the muscles there and the muscle strength. So that's something

that's really important, but it can take a long time. It really can take three, six months for your pelvic floor muscles to come back. And I wasn't prepared for that. I don't know whether that's the same for you or people you've spoken to. Definitely. And you know, there's all kinds of problems. I mean, as you will know, I mean, the dreaded, which is most probably apart from sex, the thing most spoken on the groups, the dreaded constipation, you know, after the operation, especially when it's an abdominal cut and so. And so there's a lot of pain, but also, of course, general anesthetic and slow down everything. And then women are scared. And all these things, I have on the podcast series that I then did on this, there's a physiotherapist who's a pelvic floor expert that we speak to.

And she talks about if women just come to her beforehand, she can teach them how to actually go to the bathroom after the operation, which can be a major point of anxiety and fear and things. So it's even little things. Well, little, it's not little when you're in it, you know, but something like that. No, but it seems little when you've got normal bodily functions. And the other thing that happened to me, which is not uncommon, is that my bladder didn't work properly. So I was catheterized, I was taken out, I couldn't tempt you my bladder. And the first nurse that put my catheterine inflated the balloon on my urethra. It was really painful.

She didn't believe me. And I said, just give me a syringe. I'm going to take the water out and take it out myself. It was awfully pain and new. And so then the consultant came in and catheterized me. That was fine. I had a catheter in for a few days at hospital. Then I had it taken out just before I went home.

And then at three in the morning, I was in so much pain and discomfort. I'm very fortunate that my husband's a urologist. So he went to the local hospital and got a catheter and everything else and very unromantically catheterized me because I didn't want to go back to the hospital. I hate hospitals. I really didn't want to. I knew they would admit me and I didn't want to. So I had a catheter, but then I had an indwelling catheter for six weeks.

Wow. So I had a leg bag. I was wearing my husband's pajamas, you know, having a bag next to the bed. In the daytime, I'd have a leg bag initially and then I would just have a clamp. And it was really interesting because my husband's a reconstructive surgeon. There's a lot of work for people who have permanent catheters to enable them to urinate through properly, through their urethra. But I hadn't realised how awful it feels having a catheter in.

You feel like people know that you've got it in, and of course they don't. There's something really horrible about losing control of a normal bodily function. And I then took my catheter out too early, so he had to recatheterize me. And then I had awful urinary tract infections, and many people listening, I'm sure, will have had urinary tract infections. Very painful. It was awful. Like, I can't even begin. There was one I had. I had a few, and I had one that hadn't responded to two antibiotics. And it was just excruciating. I can see why people even become suicidal with the pain of having a urinary tract infection, because my bladder was all inflamed. It had this catheter in it. And then I had this infection. And, oh, I can't tell you, it was awful. And, like, I'm married to a urologist. I'm a doctor. I was really scared. And I didn't know. know who to ask for help. I knew I couldn't get an appointment with my GP. It's accessing help and

care. And, you know, when you're in a lot of pain, it's really scary. It really is. And the thing is post-operative you're also vulnerable. And then I think there is an additional issue for women, and that is asking for help. I think men, you know, they might struggle as well. But I think particularly also when it's got to do with gynecological health, which we are still, no matter how open societies have become still hiding, you know, still not talking about as often, you get the message you should get on with it, you know, like, and especially after hysterectomies where, you know, they are children and they are pets to be fed and they are food to be made and washing to be done and jobs to get back to and women just persevered through it, you know,

and that's often very unwise from a physical and mental perspective. And I think that's one of the things a doctor recently wrote to me and said a gynecologist, that she had listened to my podcast. And one thing that I changed after the podcast was that she decided she will never do a hysterectomy again unless she's also met the partner of the women involved. How interesting. Because she realized just if the partner, be the male, female, whatever the partner's the relationship is, if they are not prepared for what happens and are being able to be

in a supportive capacity there, then she realizes how much the patient is going to suffer. And I think, you know, how often do we just go to gynecologist or for exams on our own? And so important. It's really interesting. So I also, one of my friends had a hysterectomy when she was young. She's a doctor as well. She was 38 and had a hysterectomy for another reason. And she said to me, Louise, I made the mistake of doing too much, emptying the dishwasher too quickly.

And I had to be readmitted because my scar broke down internally. She said, you don't want that. So then I made this rule, but I loved it for three months. So not quite. I didn't quite do it three months. But I said to the children and my husband, look, I'm really not. I've cooked for the freezer. Food's all done. I'm really not going to. And I loved the time because I worked a lot. I had my laptop on. I caught up with loads of articles and all sorts of things that I wanted to do. And I actually, that's when I created the confidence, the menopause course. I found a company to help me with it. I had lots of time. But it is making

sure that people understand that, and I had three cesarean sections. So you do naively think, oh, it's the same. Exactly. I have too. Exactly. Yeah. And it's not the same. And I think the other thing is, and I'm quite happy to talk about it, but the intimacy, if you do have a partner and you want to have sexual experience, it could be, I think, harder than after a baby. Because especially when you've had a total hysterectomy, you can't visualize as your vagina the same length. Does it feel the same? Your pelvic floor's not the same. You know, and in fact, Sam Evans, who's a great nurse-trained sexual health person, and she, she contacted me before my hysterectomy and said, Louise, you need to think about the clitoris. You need to think about sort of stimulation and in a different way. And I thought, gosh, why don't we talk about this? Why do we just have to think about penetrative sex? And that's all we can think about. But our clitoris isn't damaged or affected, usually in a hysterectomy. And we need to talk very closely to our partner, what is comfortable, what isn't, how things change? Because you say that first three,

six months, our vagina, our pelvic floor, all those tissues change quite a lot, don't they? And the thing about it is that, of course, in many cases, when they remove the cervix, they also do shorten the vagina sometimes. So there is a difference in how it feels. Of course, if the hormones are, if you have affected hormonally, of course, also the vagina, as I know you speak about a lot can get dry and you know so it's very important that that can dealt with if there's an actual wound of course that's all and then psychologically women are worried you know if there's now because of course now if the cervix is removed these stitches up there you know and of course women get anxious what if that gets undone of course they tell you now to have sex for the first six weeks but

it's quite important that partners also understand that sometimes it takes a lot longer for women to get back into the sexual game you know they don't feel well they don't feel themselves. It's going to take a lot of time and patience, and that's okay for women. It also must feel that it's okay and not feel obliged. Some women on the groups are day three, and they're like ready to rock, you know, not wise, maybe.

But, I mean, and I think it's actually most probably something that's not only to do with hysterectomies, but is also for women in menopause generally, you know, is to rediscover our bodies, to make peace with a body that changes dramatically, you know, not only hormonally, but also in the aging process and so on. And for me, I write about that in the book.

That's not in the podcast, there's a medical, more of a medical podcast. But the book itself, I talk a lot about how I had to go through my personal journey of re-looking at my body, looking at sexuality, you know, sort of really interrogating that and what it meant and, you know, femininity. And, yeah, so I think it's not something that's unique to hysterectomies, but of course, there is a sort of physical and psychological aspect to that. but I think it's also a general issue around menopause. Yeah, absolutely.

I think totally. And like I've always said, we're all individuals. So one person might have the operation be bouncing back, like you say. Others might not either physically or psychologically or both. And that's fine. Nothing's right. Nothing's wrong. But the most important thing is that we are listened to and understood and know that, you know,

time really helps, but we can be different in our experiences of the same operation. So I'm really grateful for your time. Before we finish, I just, you've got your book there, haven't you? Just hold up so you can show. Just three reasons, really, why people might want to read the book, whether they've had a hysterectomy or not. Many people will know someone that's having one or had one or going to have one. So three reasons sort of why we should look at the book or listen to your podcast series

that you mentioned. So the book, which is called Never Waste a Good Historectomy, the first half of the book is about my experience with hysterectomies. And women who have read it, have very kindly said to me that they felt like it was them speaking. You know, they really associated with what was happening with them and the fear and anxiety and the bewilderment and so on. And then there's a little bit of activism in there as well, you know, about why not more research money spent on specifically ovarian cancer, you know, so little money and the survival rate hasn't improved. And I should say mine in the end turned out to be benign. I should have said that at some point.

thankfully. So I think for me it is about if you're feeling lonely, if you need a voice, you know, if you need to read something that might be similar to your experience, that's definitely there. The second part of the book is more for anybody who's going through menopause. Their I deal with, you know, so many of the issues I think women go through during menopause, money issues, fears of relationships, the good girls scenario, the superwoman things, all of that. And then the third sort of thing, about the podcast itself, the podcast under the same title, Never Waste a Good Historectomy, is a 12-episode series.

That is different from the book. It consists of interviews with doctors and medical experts. So it takes you through, and that specifically for women with either have gone or going through a hysterectomy. It takes you from the terminology, because, you know, I have to say, I was lying on the operating theater, and I had, you know, they ask you for permission for everything they're going to do, and they said a hysterectomy, and I said, yes. And then they said, oophorectomy, and I sat up and I went, hold on, what's that?

You know, like, here's me not knowing what they're going to do to me. So the terminology, what to pack for the hospital, what to expect on the day, the pain relief. It takes you through the recovery period afterwards, the sexual issues after a rasterctomy, the pelvic floor issues. There's an episode for men or partners specifically and a psychological interview as well with a psychologist about the impact. And that, so if you are going through hysterectomy or you're, have a mom or a friend who's going through it, the podcast, I think would be very, very helpful. And women from all over the world is, in the weirdest places in the world, is downloading it. And clearly because they feel that they're not empowered enough by the information.

Wonderful. So lots of good tips, lots of information. Yeah, lots of reasons. But I'm really grateful for you opening up this conversation. Thank you. You learn so much from what people have really experienced. but hopefully people will just think a bit more about it and also to be able to ask the right questions

if they're going for surgery themselves. So we will share the links in the notes. But thank you so much for your time. I've really enjoyed it. Thank you. Thank you very much. You can find out more about Newsome Health Group by visiting www.newsonhealth.com.

And you can download the free balance app on the app store or Google Play.