Beyond the Surgery: A Candid Talk About Hysterectomies with Melanie Verwoerd

Val is honored to have the opportunity to sit down with Melanie Verwoerd, an author, podcaster, and advocate for supporting women and the medical community to better understand hysterectomies, among many other impressive accomplishments.

In this conversation, they explore Melanie’s personal journey, from the shocking discovery during a routine gynecological checkup of a potentially cancerous growth on one of her ovaries, to undergoing a radical hysterectomy just days later. She also details her learnings acquired throughout the recovery process and the advocacy work she has pursued since to enable more women to understand how to "Never Waste a Good Hysterectomy".

Links to check out:

Find out more about our guest: Melanie Verwoerd

Find her Book and Podcast: Never Waste Good Hysterectomy
Book & Podcast

Learn more about Melanie's new organization, "When Women Rise", a four-night luxury women's retreat intended for women of all ages, who feel that they need time for reflection, rest and healing.

Not So Private Parts Website
NSPP Instagram

Transcript

Raley's Song:
 
When you know your body, you feel empowered. Open conversation, safe space, sharing stories, knowledge.  Learning together,  growing and knowing not so private parts.

Just a girl and her gyno mom, let's get into it.

  


Acknowledgement of Country:

We would like to acknowledge the traditional owners of the lands in which we create this podcast. The Gadigal people, the Bedigal people, the Peoria and Pottawatomie people. We pay our respect to elders past and present. We recognize and respect their continual culture and contributions they make to the life of these regions.

Indigenous women have played and continue to play a vital role in shaping the health and well being of their communities with deep knowledges and practices that have contributed significantly to women's health.  A sincere thank you to the women before me. 

Medical Disclaimer:

Whilst today we are speaking about some medical conditions and go over treatment options and information, please do not consider any of this to be personal medical advice.  If you have a condition that needs treatment, please see your own medical provider to be properly evaluated, counseled, and treated. 

Val's Personal Story:

To begin today I wanted to share a bit of a personal story.  When I was younger, around 14 or 15 years old, so  in early high school, I went with my mom to Guatemala on a mission trip through this organization called Hearts in Motion,  it was an extremely influential trip for several reasons.

Since I didn't have  a definite skill set like my mom.

I was really just jumping between a lot of different community work groups, doing some construction, getting to do some playing with wonderful kids at an orphanage, preparing food to deliver  and helping out in whatever way I could in the medical hospital.  However, since my mom definitely does have a definite skill set to provide, she was there to be a medical provider at hospitals in the area of Guatemala A bit like Doctors Without Borders, if you've ever heard of something like that.

She was in the hospital every day meeting with women and performing surgeries.  The one day that I was in the hospital on this trip,  there was another doctor on the trip who was taking out uterine fibroids for a local woman in the community, when it became apparent that he would need to take out the entire uterus throughout the surgery.

I can remember being a young girl and Afterwards, , a translator, going in to tell the woman that  the entire uterus had to be removed during the surgery, which was a known possible complication, but not expected.  Hearing this woman crying in the room, hearing the information delivered to her that she would no longer be able to have kids, this is a bit of a sad story to start off, but I can honestly still hear this woman's cries if I think back to this memory.

Back then, I was young and very confused about what was going on.  And since then I have learned a little bit more about hysterectomies. I have known some women who have had hysterectomies, some speaking about it openly and some only in whispers. Yet I still know very little about this experience and what it would be like physically and emotionally to go through something like this.

There's a bit of confusion for me about the silence surrounding it because This is not an uncommon experience. In fact, hysterectomy is one of the most common procedures for women in the United States.  14. 6 percent of women in the United States have received a hysterectomy and that's around 600, 000 women in the U S each year.

That is not an insignificant portion of women  yet, despite the large quantity of women who go through this experience,  I know very little about what the experience of this process would be like.

Today we're so lucky to be joined by a guest who details her personal experience with learning she would need to have a hysterectomy to the actual process of healing physically and emotionally from this big life event.

We lean a little bit into the medical science behind hysterectomies today, but mainly we're here today to listen to Melanie's personal experience and story.  Later on in the season, we'll have an episode that we dedicate to the medical science of hysterectomies where we'll speak with my mother, Dr.

Denise Poulos, who has performed  thousands of hysterectomies and get really into the nitty gritty of what's  So tune into that later in the season, but today we're here to listen to this story and I definitely did a lot of learning in this episode and I hope you do too.  Let's begin. 

 
Introduction to Melanie:

Today I have the incredible privilege of speaking with Melanie Verwoerd. Melanie is an incredible woman and I am absolutely floored that she is a guest on our podcast. She is an Irish and South African political analyst, diplomat, activist, author, and fellow podcaster.  Her history and accomplishments could be the source of a trilogy of books in and of itself.

She was an anti apartheid activist, a member of the African National Congress, the South African ambassador to Ireland, executive director of UNICEF Ireland, and in 2007 she was awarded Ireland's International Women of the Year award. I mean, come on, how more cool and accomplished could she be? And now just chatting here for a minute.

She also is a totally normal down to earth, easy to talk to person. So just a triple threat.  I am just scratching the surface here. And if you're interested to read more about her incredible story and hear about her projects and involvements, then you can head to her website, which is www.melanieverwoerd.co.va. I'll spell the last name, which is V E R W O E R D.   However, the reason that we have Melanie here today is because in 2023 she published a book titled Never Waste a Good Hysterectomy and shortly after came out with a podcast by the same name.  In her podcast, she details her personal journey of having a hysterectomy, as well as the recovery process, and chats with specialists and experts to discuss the confusing medical terminology and the physical and emotional repercussions of having a hysterectomy.

I could not more highly recommend her podcast. It has been such a source of learning for me as someone who, Does not know a lot about the subject of hysterectomies. Plus Melanie has such a soothing and calm demeanor, but also a frankness about her that leads to some really great conversation.  I couldn't recommend her podcast enough, which is never waste a good hysterectomy.

I'm so excited that she's here today.  Hi, Melanie. How are you?  Thanks, Valerie. Oh, it's such an honor to speak to you. Thank you so much. 

Ontro our Conversation:

Could just introduce us to yourself a little bit. Maybe who you are, where you're from. What you do for a living.

I live in Cape Town in South Africa.

as you said, I am a former politician. I was a member of parliament served with Nelson Mandela, which is great. Then did a stint in the diplomatic life. But realized that I'm a bit too much of an activist so I didn't so much like all the cocktail parties and  the polite diplomatic life.

Then went into UNICEF, loved that. That was obviously just a big hard job for me.  Then came back, after almost 12 years in Ireland and have been doing a lot of political analysis, environmental work,  and then also writing and a columnist.  And I have two retrievers and a cat, that I love very much.

  And a little grandson now as well. I'm aging myself now, but yeah, that I absolutely adore.   How amazing. How old is he? He is two and lives just three doors up from me, so I'm very, very privileged.  That's so, so nice. My sister, I just got back yesterday. She just had her baby shower, so she's due in two months and that's gonna be  our family's first grand baby

oh, everyone's so excited. I feel like our world's about to change, but I'm excited for it. Definitely. But for the better, I think.

We're here today to talk about hysterectomies. From my understanding, you were at a routine gynecological checkup when you learned that you had a growth in your uterus  that may or may not have been cancerous.

I was wondering if you could take us back to how are you feeling on this day, maybe before you got to the appointment and during and after,  what was going through your mind?

This was sort of towards the tail end of, of COVID, and I have always gone on an annual,  annual gynecological checkup, and I went for this checkup, usual kind of checkup, didn't have anything that bothered me particularly, didn't feel unwell or anything.

I was lying on the bed and the gynecologist was doing an ultrasound,  we were talking about our mothers, just, you know, how you, when you go to the gynecologist, you just talk as much as you can, not to focus on what they're busy doing down there.  We were talking and then she suddenly went very quiet mid sentence and she was leaning into the ultrasound screen,  and she suddenly said, What is going on here now, you know,  it's a very interesting thing when that happens.

I think anybody who's ever had A negative, result during a medical checkup knows that feeling when the energy in the room suddenly changes, it's as if it gets cold and yeah, you just know something bad is about to be said or happens.  She said, are you in pain? And I said, no, thinking that is a good thing, which I've eventually found out not so good pain would have been a better one.

Then she just. Became very matter of fact and said, can you quickly run up in the hospital that has surgery was in the hospital? Can you quickly run up to get some blood tests?  I said, sure, but what are you looking for?   She looked at me and she said. I can see there's a growth and I'm looking for cancer.

I just remember  the world,  it's like you have that. I describe it in the book. It's like those,  like a wall that starts to crack and water starts to pour in a little bit. And the crack gets bigger and bigger, faster and faster.  Anyway, I, of course, was Googling,  ovarian cancer, but before the lift doors even opened,  not a good thing to do, never a good thing to do, went for the blood tests,  and the tumor markers became, came back as elevated.

So then follows.  Two horrific weeks of more and more tests, CT scans. Every time the news got worse, it was clear there was a big mass and it was a hard mass. It wasn't fluid filled, which is never a good sign because a fluid filled one is most likely a cyst, as opposed to a hard mass, which could then be cancer, is usually, or is often cancerous.

A number of specialists all referring me on to the next one. And eventually I came to a very good specialist in South Africa, head of gynecological oncology.  He said that there was a 70 to 80 percent chance of being cancerous.  He said that I really didn't have a choice. I had to have a radical hysterectomy.

It was done two days later.   Just to say for people who don't know the terminology,   strictly speaking, hysterectomy just refers to taking out your womb.  But if people talk generally about a radical hysterectomy, what they refer to is the uterus, the ovaries, the cervix, often some of the ligaments on the side as well.

They really remove. everything.  if they suspect cancer and there is a growth mass, they usually can't do it laparoscopically.  As in my case, they do an abdominal cut.  So that was my journey.  And then, you know,  that's, that was just the beginning of it all. 

Wow.  I feel like from going from the gynecologist to two weeks later, having a radical surgery is already a lot to  wrap your mind around.

Did you feel that you had heard about hysterectomies before you experienced yours?

Well, I knew of it. My mom had had one and it wasn't a very positive experience for her and it wasn't for similar. It was for,  uterine growth.  She was never quite 100 percent the same afterwards.  I knew, and I was adamant always that I didn't want an hysterectomy.

I was very, very clear about that.   But I also, and I mean, I started researching it obviously then, cause that's how I kind of make sense of my world. I write and I, I control my, my chaos and I research and, you know, hysterectomy still remain one of the most common performed procedures. especially on middle aged women.

in America, there's on average 600, 000 a year, of which, by the way, almost 70 percent does not meet a high level panel's criteria for hysterectomies.  It's still a very common performed procedure. But what I realized and what I realized more and more was that there's a lot of secrecy around it.

Women don't talk a lot about it.  And so I knew my mom at it. And if you speak to most women, they would say, Yeah, I kind of the best I know is my mom had one or my auntie had one or something like that, but I was certainly not  very knowledgeable about it.  Didn't want it. But I can also tell you that in terms of, that's why I did the podcast as well, in terms of even some things like the terminology was when I was lying on the theater bed, just before they gave me the general anesthetic.

The nurse came by and said, just to confirm the procedure we'll be doing, we're doing a hysterectomy. And I said, yes. And she said, and then we're doing a oophorectomy. And I was like, sorry, what? You know, the gynecologist, the surgeon looked in and said, that means taking out your ovaries. And I said, Oh, I didn't know that.

And then she mentioned a few more other terms, you know? So for me, I didn't know enough. And I think it's one of the big problems when it comes for women in terms of taking control and feeling empowered when it comes to.

I can,  Relate because I feel like that's one of the big goals we have with this podcast is that  I find sometimes there may be a disconnect between Doctors and patients and not by anyone's fault.

It's just that medical terminology is a whole nother language they have classes that are all about learning it as if it is another language It's a lot to get caught up in two weeks to learn all there is to know about something right before it goes on and like you said, I commonly will go to Google and I know a lot of women or people do when they hear a new term that they don't know, but there's so much information.

It's also hard to discern what's true, what's not true,

And for me, one of the things I've been trying to achieve with the work that I do around hysterectomies is not only to empower women, but also to educate doctors. They don't always like that,  but I have distributed  hundreds of my copies to doctors.

and the surgeries and so on.  Many of them have said that it's totally changed their view about how to talk to women, how to talk to their partners, for example.  I think there's a lot of education that needs to happen to with doctors too. For them, this is a, this is a standard procedure that they do frequently, and The doctor, when I spoke to my surgeon a few times afterwards, he'd say, well, you know, that's very common.

And I said, well, I'll know now for my next hysterectomy. And the point is women only go through this once, you know? So, and doctors forget that half, if not more of this whole process around healing is actually in terms of empowering women to understand and to take control of  their own medical healing process.

You spoke to it somewhat already, but  is that what inspired you to create your book and your podcast? Did it start off as something you wanted to share with the world or did it start off as something more personal for yourself?

So for me, when I, I actually, so I write as a rule, I mean, it's not my day job, but I do write a column and, and so on.

And like I said, it's kind of my way of when the world starts spinning a little bit too fast, what I do is that I get control of it by writing.  I actually remember even when I was going up the lift to go and get the blood test on the first day, I thought to myself, I must take notes  because I need to write about this to whatever the results are going to be.

I should hasten to add that,  as it turned out, then after everything, it was a gigantic growth. It was. This long side of a credit card in diameter, so it was very big and angry looking, but it was benign.  Thankfully,  I was one of those very lucky cases where it was benign.   The book was very much my personal journey and it goes beyond the hysterectomy.

The hysterectomy then pushed me on a whole internal journey that I think many women and during middle age goes through, you know, making sense of My role now, making sense of my body, making sense of sexuality at an older age and  in middle age or post menopause.  To also deal with some things that no longer serve me,  being a good girl, which I think almost all women suffer with, trying not to be a superwoman anymore.

And trying to  claim my space in society by also saying, even though I'm getting older,  I will not become invisible, I will not allow the world to make me invisible. So that was the book. But then during that whole process, what I realized increasingly was I went on Facebook and I saw all these communities of women all across the world, me talking to one another post hysterectomy.

Clearly  no matter where, so Australia's.  South Africa,  Britain, America, there's a number of groups,  all over the world, clearly not having even the most basic things around, around hysterectomies and being so,   felt so abandoned by the medical profession.  I'll never remember, there was one example where a woman, Said, look,  sisters, please help me.

I'm eight days postoperative.  I've just stood in my kitchen. There's huge clots of blood falling out of me. Should I be concerned? And of course, of course, she should be concerned, right?  Mm-hmm. So, but the point is that she did not feel that she could just go to doctor.  They were asking each other.

So I felt there was a great need for women across the world to be empowered and to understand hysterectomies, to understand the recovery process. That's why I decided to do the podcast. The podcast is like you said in the beginning, very much,  that's not, I bring my personal experiences in, but it's much more, they are all interviews with medical doctors and health professionals about everything from the terminology to what happens on the day, what happens just a few days afterwards, talk about general anesthetic, talk about pain relief, talk about how quick,  the dreaded,  pooping situation after hysterectomy.

It takes a lot of time on these chat groups. Then, you know, the issues around when can you have sex again? Most probably the most after the pooping, the most talked about issue. There's also one for partners, the hormonal implications, all of that.  So we take it in 12 episodes  and I'm very thankful cause it's really reached women all over the world.

We can't believe when we're getting, where we're getting downloads and it's still happening. Completely growing organically. We didn't have money. For advertising or promotion or anything. So it's growing completely organically. 

That's amazing.

What made you decide that you wanted to give the book and the podcast that name?

I don't know. It just came to me one day. I didn't want to be overly serious or you know, I wanted people to smile a little bit.  I just thought one, I actually thought quite early on, you know, about the writing. I thought it would be a terrible, I was lying in my bed, not being able to move much and thinking it would be a terrible waste.

If I couldn't make something good out of this,  as part of my, my life story, but I kind of thought it would be just a waste, you know, so I need to make sense of this. So I thought that,  never waste a good hysterectomy,  let's make some good out of this. 

Also I feel the name, it sort of normalizes hysterectomies.

I found, even when I had my hysterectomy at the beginning, I found it quite, I found it difficult to even say it.  And I found other women who would come up to me and whisper  and say, I was sad  and I was intrigued as to why we were whispering,  but I found even with myself.

That I was, at first I just said to, I do work in the financial sector, political analysis. I say to my clients, I'm just having major surgery and they were, of course, 90 percent of them are men. So I just said,  I'm having major surgery and I was thinking, why would I not say that I'm having a hysterectomy,  and there is something,  there's some,

cloak of silence still around hysterectomies. And I think that's something I really,  if you understand how many women are having that,  the EU, it's been about 1. 5 million per annum. It's not like a small amount of Idenka in India and other places in Africa or Australia. In Australia they are actually bringing the numbers down and in Scandinavia the numbers are reducing.

But if you start counting up that number, it's an enormous amount of women who go through the same thing.

Where do you think some of that taboo or that silence around it comes from?

Look, I think it's firstly because it has to do with sexuality in some way,  I think there's still some, we're starting to get a little bit better about talking about periods and menstruation, but even that's a little bit secretive.

We talk about sex all the time, but that's because men,  of course are very interested in sex, but menstruation's still a little bit secretive.  Then I think menopause is getting a bit better. I think there's more and more, especially over the last.  two to five years, there's been a lot more discussions around that through some very clever trailblazers around this.

But somehow hysterectomies is still the one thing.  I think one, it is to do with sexuality to some extent. But I think the other thing is, it's got to do, it's something that we think, or what I also thought, and many people think, something that happens to older women, right?  In our culture of also,  anti aging, especially when it comes to women, it's something we often don't want to talk about because it's an old woman's thing, right?

Even though that's not true. It's the,  of course it happens to more to women in middle age, but it also happens younger,  it's usually women  late forties and then in the early fifties.    I think that's maybe part of it.  And hopefully,  by talking about it a lot more, women also feel more free because the problem with silence is that women then don't feel at liberty to seek help.

There's a lot more of an attitude like this happens to women at a certain age and you just have to,   grit, grind your teeth and just get through it,  push through. And so there's not an acknowledgement of how difficult this is and what a long recovery process and what a very dramatic,  change this can bring about in women's lives.

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 I was hoping we could talk a bit about   the recovery process.   What was your process like in terms of a timeline and did you get a lot of information about it before the surgery? I know yours was quite rushed, but had you any idea  How long the recovery process was going to be.

So obviously I asked the surgeon beforehand. He said to me, the first week you'll be in the bed, the second week you'll be in the couch and the third week you'll be happy to make yourself a sandwich in the kitchen.  That was not my experience at all,   and I think, so let me just say women experience this differently.

Women who will go through laparoscopic procedures. Or vaginal hysterectomies, they seem to recover very quickly and not always, but many of them recover a lot faster because of course there's no, there are of course stitches, internal stitches, but it's not the very severe lengthy cuts in your abdomen, which causes a lot more difficulty in terms of recovery, getting up, getting mobile, et cetera, et cetera.

Mine was the more severe one.  And, you know, I'm so thankful to one or two women who said to me at some point when I was complaining four months in that I'm still so uncomfortable and said, no, this give it eight months to a year. And that's when you'll  start forgetting that you're uncomfortable.

There was definitely, it took a lot longer initially. It was a lot more painful than I thought it was going to be.  It's,  there, there was secondary things like, , just generally recovering from long general anesthetic,  having to get yourself fit again.   For example, I was never told that it would be really important to get physiotherapy  and those to even

to be able to stretch  your stomach and your front part again, because of course, everybody's everything starts to because you were accommodating pain.  Also that it's incredibly important for pelvic floors after hysterectomy, because especially when you have,  the,  radical hysterectomies where they remove the cervix, so it's really important to strengthen those muscles.

I don't think, and this is part of the reason I have the podcast, I don't think women are prepared well enough. I'm sure there's exceptions, but many women are not prepared for it.  Certainly they also not prepared for that it takes a long time and then women feel that they fail. And I think that's the part of the message when you get told that you should be up and about at six weeks and you don't feel fine.

Women feel that they fail or that there's something wrong with them.  I think  that's very problematic.

  I do feel when there's a lack of information, then you put so much of the blame on yourself and that's been recurrent in so many of the topics we've talked about, like UTIs or yeast infection or painful periods.

That since women are so accustomed to just learning to deal with pain or muscle through it or go through it in silence   Yeah, there's all this blame you put on yourself when things aren't going well, and you think that they should, and everyone seems fine except you. But it's just because some things aren't talked about.

That's the thing.  There's a lot of research, which I read, and you know, when I got the book, that I when I was writing the book that I started thinking about,  and then found scientific evidence and research for it.  There's, for example, the way the medical profession handles women in pain.

There's been research done mostly in America, which,  they often ask you on a scale of one to 10, where is it, where's your pain level? And what happens is that women tend to think about it, even subconsciously, not consciously, and think, I don't want to sound hysterical, or I don't want to sound like a crybaby.

So they usually, on average, put their pain at two points less than what they actually feel. The problem is the medical profession,  both male and female doctors, not everyone, but on average,  have somehow got it ingrained in them that women tend to exaggerate. So they then on the woman who's already given them a two point less will then take it even two points below.

So a woman who, for example, I've said has an experience of a pain of eight will say she has a pain of six. The doctor will take it as a pain of four, and that's where she'll be treated for.  whereas. Men's pain are always taken at the point where they say it is, and men also tend to say it, and that's just pain relief.

There's many other examples of this,  women who come in with heart attacks, they're some seven times more likely to be released, during mid heart attack than men are. On average, it takes a woman about between 20 and 40 minutes longer to get pain relief or severe stomach ache when they come into emergency rooms.

There's a lot of research that's been done on this.  And I think part of that is that we have been,  women  intuitively know that we don't want to sound hysterical. We don't want to be deemed as not tough and so on.  Then we don't talk, we don't share enough and we don't get the help we need  from medical professionals either.

I wonder if it stems from to, we had a woman on talking about endometriosis and feeling gaslit by doctors  after you've been told you're wrong, you're wrong, or you're not in pain, you're not in pain, you can start to make a self fulfilling prophecy for yourself where you believe it.  I can really see how that's a case for a lot of people that.

If doctors are of a certain status of responsibility and trust and they're telling you, oh, no, you're actually fine.  I think we've learned that they're the experts and I would start to believe that  that's where we get back into the shame of, oh, maybe this is just in my head.

 





  Going back to your recovery process,  what were some of the physical side effects that you experienced in the first year after having the surgery?   There's obviously the very intense period in the week, two days and then week and then weeks,  just postoperative pain, lots and lots of pain,  really, and I'm having said all of what we've just said, I am tough.

That pain was really extraordinary.   And then, of course, in the first few days, there's a lot of issues, very painful bladder, because, of course,  your urinary tract doesn't quite work the same.  There's lots of issues around constipation, post specialty general anesthetic, and because you don't move quite enough,  breathlessness,  a lot of that.

Just really,  a lot of discomfort. I was lucky that I had largely gone through menopause by the time,  the operation was done.  But even so I had menopausal symptoms again, because of course, as we know that even if you've gone through menopause, your ovaries and even uterine spaces will make a little bit of hormonal.

We'll still excrete some hormones just to protect your brain and your bones, et cetera, at a very low level.  But once they, of course, remove all the ovaries and so on,  I started getting menopausal symptoms again as well, which was really unpleasant. For women who go through menopause, surgical menopause.

So women who have not gone through menopause, it can be a nightmare if they don't get sorted. And women who go in for hysterectomies, who know that that's going to happen, must speak to their doctors and must find a sympathetic doctor who will help them through that. If there is a cancer risk and they can't use,  HRT  or bioidentical  hormones, there are other things that they can be given,  herbal  stuff, et cetera, because it is Absolute nightmare to try and recover  from a hysterectomy and then go through surgical menopause, which is  very intense.

Which is naturally going into menopause.

I can imagine because  Especially with naturally, it's  a gradual, a more gradual tapering off, whereas then to suddenly hit menopause,  after you've woken up from anesthesia, and while you're recovering, that would be a lot to deal with. In half an hour, that,  they will, You will be completely, you will go in fully hormonal and you'll come out and you'll have zero,  hormones left or that nothing will be excreted.

It's very traumatic to go into, surgical menopause and it's very difficult for women.

  What were some of the more emotional implications that you were feeling when you were going through your recovery process?

  It was very interesting. I think, The first thing, and I felt almost guilty about that, was my instinctive reaction when the doctor called and said, I've got good news, this is not cancer.

Of course, there was a great sense of relief, because I'd already looked at what the survival rates for ovarian cancer was, which, by the way, is absolutely shocking,  that so little, and it's got to do with how little research money goes into the research of how to prevent cancer. identify and cure,  ovarian cancer,  the survival rates have not increased in the last 50 years.

I mean, how is that possible? You know, compare that to prostate cancer, which is a completely different ballgame, almost it's caught in time, 90, 90%, curable.  So yes, I was very relieved.  At the same time, I was also upset and angry because I then felt  I'm angry at medical science for the fact that they couldn't do this in any other way that there was no other way to identify that there was no way of doing a biopsy.

There was no way of figuring out that whether this was cancerous or not, except to take all these organs out that I didn't want to be taken out.  , I, it wasn't, I don't believe,  that it's our womb that makes us women.  Not at all, but I do think that it is a very.  Our organs are very central parts of who we are,  and I did feel, and I think when doctors just say, and I had that a lot, and lots of women have that, if you don't have functions for your womb anymore, so if you've gone into menopause or,  can have children, why don't we just rip it out?

Why would you want that? Yeah, it isn't that easy. There is an emotional attachment. There is, you know, a link,  for women. Yes, of course you get over it, but there was certainly for me a process then of mourning.  And then having to make sense of, like I said in the book and I write about that, quite honestly, what does it mean now for me?

I mean, there were a few funny things, like I wanted to know what's there now.  I wanted to know, is there now just a void where the uterus was?  The thing was the doctor actually took photographs for me of what he took out. And when I looked at that, eventually it, I felt quite sad.

I felt really sad. to see my uterus lying there line there with the ovaries, the one with the big growth on, And, to look at this, , uterus that I had born my two children,  so yeah, it was,  it was complicated emotionally,  and then of course, just the sense of vulnerability.  And like you say, also shame when I didn't recover fast enough,  definitely all those emotions were thrown into that.

Did you feel that you had a good support system around you? At the time,

I don't have a partner, so, but my daughter was very helpful. So yes,  in that sense, I felt personally, it was fine. I did not feel that the medical profession at all supported me.  I had to go and that might be different from country to country and from experience to experience, but I had to go and seek out  the help that I needed.

And of course, I'm also thankful that I had the financial means to do that.  not everybody has the money. Or their state provides them with enough, resources to get physiotherapy, to speak to somebody on the emotional side,  and to, to make sure that I recover and to get, , Pilates instructors that could deal with me.

and work very gently in terms of recovery and so on.  I felt in that sense, I did not feel that I had the support at all from the medical profession and  my insight into what I've, and I've spoken out, spoken out to hundreds of women who've had hysterectomies.  I think that is definitely the,  the vast majority of their experience as well.

That's the podcast.  I almost wonder where the continuation of care stops because I'm wondering if maybe it's just a surgery like you said that's pretty  normal for them to be performing or common and then once the surgery is over and  successful if that's where the duty of care stops or where it should stop because like you said if there's this really long recovery process that involves  Multiple specialties coming together

I think medical professions should be far more inclusive.

I know of some women's hospitals where this actually happens where they work as medical professionals in a team.  I think one example in the States, one in Australia, where, and there might be more, where immediately when a woman has to have a hysterectomy or give birth or any, or has to have cancer treatment, that it's a team of medical professionals that work with you.

And where,  so you will in advance meet your surgeon, but also your anesthetist, and then your physiotherapist, oncologist, if that's relevant, et cetera, psychologists, et cetera, et cetera.  And that's, of course, a very intensive and expensive thing to states. But it seems to me that it also prevents further crises,  or relapse or secondary treatments that are needed.

Because I've also heard of so many women who didn't realize that they shouldn't be cutting the lawn or do something crazy and, picking up heavy children and then has to go back in because they've had some secondary complications.

I think there is a duty of care. I, it's not necessarily always the surgeon's care. It's a responsibility because, you know, surgeons are good at being surgeons, of cutting things out of people and fixing things in theaters. So they might not even be the correct people  to provide their support afterwards.

But  I think the medical profession in general and on average is failing women when it comes to hysterectomies.

In your research, have you found that there's advocacy work in this space or that there's people that are trying to improve this space?  I think there are individual doctors. I haven't found a lot of  advocacy  around it.   When I went before the hysterectomy, I looked everywhere for books of people's experience.

I could find a few medical handbooks, but that wasn't helping me, obviously.  And I couldn't find any podcasts specifically dedicated to it. Sometimes in women's health, there was maybe a one episode on hysterectomies,  but I've, I thought they fall,  that there was definitely a need for something bigger, but of course, medical professions also tough, right?

They don't like to admit,  that shortcomings on their side. So it's also,  it's, Difficult one. , I think women who generally advocate for better treatment of women in the medical and Western medical professional professions, , have all found that there's also a wall and it's quite difficult to get in there.

I think the bottom line for me is when it comes to that is that women mustn't be afraid to say you are not the right doctor for me.  The problem is you're so vulnerable at that stage, especially, I mean, and I found that myself when you suddenly confronted with, if you don't do this, you might die.  You feel so overwhelmed and   frightened at that stage that it's always difficult to then become sort of strong and an activist and so on.

But this is what I'm trying to help women with and say,  if, you know, the bedside manner manners.  It's going to matter in how you feel and how you get through this operation. If a doctor is not willing to answer your questions in a kind, empathetic way over and over again, then he or she is the wrong person.

And don't be afraid to say, you are not the right doctor for me. You know, you might be a brilliant surgeon, but you're not the right one for me. And to, to walk away and find somebody. Even if it takes three or four chances. Also not to be scared to ask for a second opinion. I know that there's still this tendency of feeling that doctors are gods, and you can't question them and they often don't like to be questioned.

But I think,  if a doctor is not willing to let you ask for a second opinion or ask the question, I don't believe that's a good doctor.  I think if I'm going to allow somebody to cut into me, I want to have the opportunity to ask at least. Another person if they think this is really necessary and secondly, and I want to be able to like this person, you know That  is going to enter my body.

It's gonna put you inside my body, you know

I'd wanted to be able to develop a bit of a relationship Also to feel comfortable to ask my questions and we were talking that this is somewhat taboo Someone that I feel not embarrassed to be talking about what's going on so I think if I was quickly cut off or dismissed I That wouldn't really lead to a safe space where I felt I could ask my questions.

Like you said, I feel like a huge learning for me in this is that  when I know the correct information and I have the ability to ask my questions and filter out my curiosity, I feel more empowered. Because it makes me feel like I have more of the control of, it's not someone making a decision for me.

I feel a part of it. Like I'm also a part of making the decision, not just someone who's went to school and studied this and is smarter than me is going to make the decision for me. I just,  I want people to be able to feel that they're included.  They're also in the conversation and that their voice really matters.

You spoke a bit about support groups and I was wondering, how did you go about finding support groups and.  Why was it something you were looking for, and what have the support groups done for you?

To be honest, through my own recovery, I didn't really have support groups, and I think that is something that is really needed.

In fact, I think every medical practice who  have doctors who do hysterectomies,  should actually have a support group afterwards, led by preferably a kind and caring nurse or staff. somebody who knows a lot.   I found eventually through my research, I found all these, like I said, Facebook, I understand we call them now communities, who have women who were talking to one another and I'm sure they are very helpful.

They definitely are. But of course, they are very rarely, are there any medical professionals on the group? So I'm always also slightly nervous about medical knowledge. Getting conveyed in these groups,  which at times I'm not always convinced that's that those are correct,  But I think those groups are incredibly useful for women not to feel so alone And at least to have a sense of others are going through it as well, which is so important, you know It's I mean the same thing when people have babies,  It's very hard when there's, when you think you're the only one who's not coping and you're the only one who's not being able to get a child to sleep or whatever,  or struggling with breastfeeding.

It's very, very important,  to have that sense of there are others who's going through the same thing as I do. And yeah, and I think that's true of any major thing, including in this hysterectomy

yeah, just to not feel alone.  Exactly. Exactly.  Oh, I love your idea of having a  support group at the doctor's office.

I have this idea. I wonder if it would ever work. I always like to pretend that I'm planning like the perfect world or planning the perfect workspace.   One of my things is that I feel like every workspace should have a therapist.  that you can make a meeting with, go in their office and talk to.  Then it's all in one space and you can have the opportunity to go and talk about anything outside of work as well.

Yeah. Therapist and a massage therapist. And a physical therapist and a workout instructor. 

I think that is really, really important, apart from being willing to ask all the questions to the doctors and is to really make sure that the sport is there when a woman gets home. So women who have. Children needs to make sure that they get the support to look after the children and not think that you're going to be fine, you know, like, you're not,   and, and it's really important.

It's one of the things that's gynecologist in Cape Town has told me is that after listening to my podcast, they've decided now that they won't do hysterectomies unless they've met the woman's partner as well, because the partners often don't. So we have a whole episode just for partners.  And I think it's really important that the partners understand,  what lies ahead in the terms of recovery, that,  that women,  get the process in place or support systems in place in terms of,  food, if they are the ones who make the food in terms of children, in terms of.

walking pets and looking after pets, doing domestic chores, et cetera, and that partners understand that they will have to either step in or provide somebody who can or,  be able to assist with that care.  I think that was one of the things that   and assume that it's going to take longer than you think, you know, originally, I'd rather be pleasantly surprised  than caught unaware.

I think then for women just to be really, really gentle about themselves and understand that they will feel, if they feel unwell. That's the way it looks, you know, it's not them doing something wrong or not being tough enough. You know, this is a big deal. Hysterectomies are for most of the women.

There are exceptions, but for most women, a really, really big deal, both physically and emotionally.  Once you acknowledge that, I think that's almost half of the journey already.  And how are you feeling now in your life?

I feel really good. I'm fine.  Physically I have the scar, of course.

Been thinking of getting a little tattoo there.  In fact, the cover of the book has, I have the cover here.  I will show you. The cover is in fact of a woman's body.  That's supposed to be the scar. And then that is flowers growing out of the scar,  of the hysterectomy. So if you have an abdominal cut, obviously.

So I feel fine. The scar is there.  Physically, I feel very strong. It was probably even stronger than before.  Look, you know, hormones will always be an issue when you go through menopause. I'm at the moment trying to adjust hormones again, which is tricky, but that's not necessary. Really only related to, to hysterectomies.

So that's obviously menopause in general as well.  But otherwise I feel, and I mean, I'm an example of it was tough, but you know, eight months to a year in, and it's now two years in, I feel very, very strong.  And basically myself.

Oh, I'm still glad to hear that.

Why do you believe it's important, as women specifically, to share our experiences?  Storytelling is so powerful, isn't it? I mean, that's how we all make sense of the world, is through storytelling. And I know there's some, particularly also in Africa, where storytelling is so important.  It positions us, you know, in the world,  in, and also in history.

But I think if nothing else, it, it's in the sharing that we support others.  I think also in the storytelling that we find strength.   I think it's really important and for our voices to be heard and for our voices to assist others and for us to use our voices to help others.   I used to work for a mental health organization that was centered around uni students and sharing your stories of mental health experiences.

That was wild to me is that the people who shared their stories of their mental health experience actually ended up feeling more empowered.  You would think maybe they were empowering others, which they were, but they did a lot of research on in this organization about the impact of the storytelling.

They found that they actually felt that their story had value and had impact and empowered and that they were happy. It was a part of their life from telling their story.   That surprised me because I think normally when you hear you think it's for the benefit of everyone else that gets to hear your story But there's also a huge impact a personal impact in telling your own story.

I feel like it validates you it does Absolutely. It's so important to even hear our own voices, you know, just to it is yeah

thank you so much, Melanie. This has been such a nice conversation. You're so easy to talk to. Oh, thank you. Thank you very much for having me. It's such an amazing podcast that you're doing.  So important.

Thank you for doing this.

 
After-Thought:

Since recording this conversation with Melanie, I have been able to purchase and read her book, Never Waste a Good Hysterectomy.  It was deeply engaging and personal. It felt like being able to read someone else's diary. I really couldn't put it down once I started.

I started on a Uber ride home from work, and I literally read the whole car ride and got inside and kept going. It helped put me in someone else's shoes, and I feel like whether you have had a hysterectomy, or you may have one coming up, or a doctor provided that to you as an option, or you just want to know more about it to be able to educate and to support others, I would highly recommend it.

You can find the book, which is titled Never Waste a Good Hysterectomy, on Amazon. com and Kindle, and I'll put a link for it into the episode, so in case you're curious about it. Lastly, if you're still with me, we normally do a community shout out at the end of every episode, where we highlight an individual or an organization that's doing great work within the women's health space.

Call Out for Community Shout-Outs:

Would really enjoy hearing if anyone listening has any Individual that they know a family member a friend someone they work with or an organization or a cause that's doing really good work in the community of women's health Because I would love to get some inspiration for other community shoutouts to do and I bet that there's others out there that know some Really great organizations.

So if you know any and you want to reach out you can contact us via email, which you can find on our website, or you can shoot us a message on Instagram. Thanks so much, everyone.