The Dr Louise Newson Podcast - 145 - Raising awareness of endometriosis and surgical menopause with Vicki Shattock

Episode Date: March 29, 2022

Vicki is 39 years and has struggled with heavy periods and related pain since she was 10 years old. She was eventually diagnosed with endometriosis at 22 but continued to suffer with severe pain, heavy bleeding and UTIs, despite treatments and multiple surgical interventions. As a last attempt to be pain free, Vicki chose to have a hysterectomy when she was 35. Even though her ovaries were not removed, she realised she was entering menopause after the operation when she began having night sweats, insomnia, anxiety and very dry hair and skin. The ‘cure’ Vicki was hoping for didn’t materialise – another battle just began instead, as it took 18 months to access the treatment she now needed for her menopause. Vicki shares some of the struggles younger women have when trying to get help for endometriosis and/or a surgical or early menopause, and reflects on the decision she made and the lack of information provided to her at the time. Dr Louise Newson advises women in this situation to speak with their doctor about the likelihood of surgery triggering menopause and to find out about the symptoms and benefits of HRT in advance, so you are prepared. Vicki’s tips if you have, or think you have, endometriosis: Do your own research and be your own advocate, push for answers Keep pushing your GP, make them listen to you, show them your pain diary and take someone with you who sees you when you have pain Learn as much as you can about endometriosis; treatments are not just surgical, there’s exercise, diet, physiotherapy, and others Understand that hysterectomy isn’t a cure for endometriosis but if it is the right decision for you, learn about the menopause and benefits of HRT in advance. You can read more about Vicki’s experience here and follow her on Instagram Vicki helped contribute to the booklet, ‘Endometriosis and You’ For more about endometriosis, visit Endometriosis UK

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 Wellbeing Centre here in Stratford-Bron-Avon. 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 with me I thought it would be really useful to share a real life experience because it's always really good talking to experts but you learn so much more from real women

talking about their real stories. So today I'm very delighted to introduce to you Vicky. So thanks Vicki for coming on to the studio today. Hi. Thank you for having me. So do you want to just explain a little bit about you and what's, been happening and then we can just talk through and a bit more detail if that's okay. Yeah, of course. Okay, so I'm 39 years old. I started my periods when I was 10 years old. I was still at primary school and straight away they were really painful, really heavy, having time off school, feeling quite isolated and alienated, I guess, from my friends and just not being able to talk to anyone about what was going on because it was such a

taboo subject back then. It's obviously moved on a lot more, but not as much as I'd like now. So these were carrying on. I first went to the doctors when I was about 12 and they put me on to some medication and just said it was part of grown up and just my age and I'll soon adapt to them and they'll settle down. They didn't. And when I was 15, I then went on the pill. I was put on the contraceptive pill to try and manage my periods. This was a sort of wasn't something that, you know, I wanted to go on. I didn't really know much about the pill and that was, to me, the pill was just to stop me getting pregnant, not to help manage my periods. But I went on it and since then, I've never been able to handle synthetic hormones.

They just haven't agreed with me. They've made me really more anxious, depressed. I gained a lot of weight on them and actually they didn't do much for the pain. They did slow the bleeding down, but that was probably about it. So then I got into a physical relationship when I was about, I think, 21, 22, and I was getting really painful sex, bleeding after sex. My periods were really heavy, much more heavy and painful than they have been. I was fainting because of them. And I kept going back to my doctors and they just kept saying it must be an STD or an infection that I had had.

So I was constantly having tests to see if I'd had an STD and I didn't. And I spoke to my dad because at the time he had, had private health care and he said you could always go and ask them for check up with someone else. So I pushed to be referred to a gynecologist because I'd read a little bit of information online about endometriosis and I matched all the symptoms. So I've always done my own research even back then and I just knew that how I was feeling, I felt like I was having a lot of water infections around my periods, fatigue, the bleeding was just like I couldn't control it, pain, I was having time of work, and I was referred to a gynecologist and I had my first

laparoscopy where they found endometriasis. So how old doing you then? So I think I was about 22, 21, 22. It was around the age. So it was 10 years after I'd first been to the doctors and they spotted endometriasis. They burnt it. away and just said that would be it, I'll be sorted and I wouldn't need to return. And this continued, I was still in a lot of pain. It probably did settle down for a few months, but then it came back. The pain came back, the heavy bleeding came back, the fatigue. And this just continued then for further up until I was 35 when I had a hysterectomy,

because I was advised that would be the best decision for me. and I'd had six previous laparoscopies before I chose a hysterectomy and before I, you know, took loads of painkillers, hormone treatments, etc. So when you had the hysterectomy, did they remove everything then? Did they take your ovaries out as well? No, they didn't. I was advised not to have my ovaries taken out and that it would just be a simple hysterectomy that remove any endometriosis they found, remove my.

cervix, my uterus and my tubes and leave my ovaries, but I wasn't given any information about if or when I might be going into menopause. I had no support at all. I was just told that would be the best thing for me to do. And did you know anything about the menoporos at that stage? Because obviously you were young and did anyone talk to you about, or did you know anyone else about the menopause? Yeah, so my mom suffered quite badly with the menopause, with symptoms. So I knew vaguely, well, I knew what it was, but I never imagine that I would, you know, come into the menopause as soon as I did to post-surgery. I thought it would be, you know, many years on. I thought this would just stop my periods, not cause other problems.

So how did you realise that you were menopause or then? Because obviously, Most of most people know because they're not having periods, but as many of you listening know, if you don't have your womb, you don't have periods. So how did you realise? So physical symptoms, my skin changed. I was getting a lot of eczema under my eyes. My face just felt dry. My nails were really brittle and dry.

My hair was falling out in the shower, wash my hair, and it was just come out in lumps and really dry hair. I was having a lot of night sweats, a lot of hot sweats during the night. hot and cold sweats. I had really bad insomnia, anxiety, fatigue and yeah, I just felt flat and I just felt that there was something not right. Just nothing made sense really. So was it easy to get help for you? Did you manage to go and get some help once you realise what was going on? I was in touch at the time with, well, I still am with a women's health physiotherapist. And if it wasn't for her matching those symptoms and advising me to

to come to your clinic, then I think I'd have struggled a lot more than I had. But it took at least probably 18 months before I got some proper support. So that's a long time, isn't it? Yeah. You just had big operation. You're in your 30s, got your life ahead of you, and then you're flawed with all these symptoms. And it sometimes takes someone else to realise what's going on.

because as you've experienced and lots of us have experienced, when you're in it yourself, your brain often doesn't work properly. It's quite hard to think rationally. And actually just getting through each day can be quite difficult. So to have someone externally, whether it's a friend, a relative, or like you say, a healthcare professional saying to you, then did it feel scary when she said that? Or did you feel a relief that there was a reason for you to have all these symptoms?

Yeah, I felt a relief, but I was still really confused. because I had my ovaries. And I think like a lot of younger women who are going through surgical menopause or early menopause, we feel that, you know, people don't actually believe us and we struggle to be heard.

And I just felt like I had the hysterectomy and everyone thought that I would be instantly better if I did as well. So I didn't feel relieved. I just felt like it was another battle, I guess. And it has been an ongoing battle to try and get the right HRT as well. So really, really hard because some of you might know when people have a hysterectomy, there is some evidence that women then have an earlier menopause

because the blood supply to the womb and the blood supply to the ovaries are shared. They do have their own blood supply as well. And so some women do have an earlier menopause. Of course, no one knows when their menopause is going. interview. So you could have had an earlier manopause, even if you still had a wound. It's impossible to know, but we know that women can. And so certainly it is really important, I think, that all women that have a hysterectomy, whether they have their ovaries in or out, have information before the operation, actually. The guidelines from now is very clear that if someone has their

ovaries removed at the same time, obviously that means that you'll go into a surgical for men then those women should be given information and ideally be given HRT as soon as they leave the

hospital unless there's reason why they aren't to be prescribed it but for women who've had a hysterectomy is very

difficult and so one of the reasons of lots of reasons why I develop the balance out but one of the reasons is that

you should really be sent home to say do these symptoms every three months and if they start to change really alert yourself

to the fact that could it be the menof cause and that might have saved you in a few months of suffering, right and this, if that's happened to you. Yeah, absolutely, yeah. And I think actually I would have been more clued for the hysterectomy itself. I probably would have asked for my ovaries to be removed, but in hindsight, having a hysterectomy was not the best decision for me. And I wish, if I didn't know, I mean, some of it I could probably blame on myself for not researching it as much as I should have

but I didn't know where to go for the research. I didn't know about women's health physiotherapists. I didn't know about menopause doctors. I didn't have a clue. I have changed my doctors and my GP's surgery since, but I did go to the doctors just before my hysterectomy and asked if I could speak to someone just to kind of help my mental health and help with that decision. But again, I was just popped off basically. I wasn't given any support or help. I just felt like I was, I made this decision myself and I'd just follow what my surgeons are, that it would be the best thing for me. It's very hard on your own, isn't it? I think as patients were very vulnerable, actually, and the older I get, I suppose, the wiser I get. But also, I've had quite a lot of

hospital consultations, either for me or my family. And you realise that every word that doctor tells you is the most important words that you're going to hear. And one of my children had sepsis a few years ago and my husband who's also a doctor, he's a surgeon, we took, obviously, it intends to stay overnight. And in the morning, I remember I was sleeping just on a camp bed next to her in the ward and I would be too scared to go and treat my teeth or even go to the toilet because I didn't want to miss the consultant warden because I knew he'd come very quickly. And I was there waiting and waiting and then he would come and I would be just so desperate to hear anything and I was often too scared to ask questions as well. It sounds so ridiculous,

doesn't it? For me as a doctor and my husband has a name actually and it is that whole thing, but then I also think it's sometimes very hard to challenge and so, I mean, this is a very big example, but when my daughter was admitted with sepsis, it was in her hip and no one believed how much pain she was in and I said to the doctor because he was going to send her home and I said, look, I really want an MRI scan. There's something else going on. She's really poorly, actually. I'm very scared.

And I heard him ordering the MRI. He said, because of the curtains, don't really, they stop the scene, but you can still hear. See, the other side of the curtain, he said to the X-Vo department, I've got this very anxious mother here, and she's a doctor. So I feel we should probably do the scan tonight. I was really upset, actually, because I was very anxious. My daughter was ill. She had an MRI scan, and she had this big infection in the bones and the joint in her

sacriolac joint and then they came out and said actually she's really poorly and need to take her to the Lord and give us a little treatment or whatever yeah and in the morning actually he did apologize to me good but I thought actually that's me because I was being quite force because I knew something was wrong but actually for other people and I do really think more and more that anybody should have some sort of advocate or someone else really there when they're making decisions and also I think it's really important that we know that we don't have to make a decision on the spot because that's also sometimes if someone says you need something you can do and you know and that's very hard because you haven't got all the information you don't know what you don't

know do you and tell us to run down the life yeah of course and i think this is why i'm pushing for more awareness around this subject because you know your body better than anyone else but i think with endometriosis with menopause our symptoms are hidden almost a lot of them and a lot of it is put down to mental health, poor mental health, but actually the pain that you go through and the symptoms that people can't see is the cause for a lot of mental health. And when your mental health is so low and, you know, you're struggling so much, you haven't got it in you to keep pushing for these answers.

You almost give up and then everything just mounts up. So, yeah, this is why I'm so passionate, I guess, now to just try and help other women going through it. because if I did know, as I said earlier, if I have known what I know now about hysterectomy, about endometriosis, about menopause, etc, I wouldn't have had a hysterectomy unless I was completely clued up on what I was going to, you know, have coming up.

Yeah, so I just don't want other women, basically, to go through what I went through, and if I can help in any way, then I will. Well, talking about it is really helpful. And to those people that don't know what endometriosis is, Do you want to explain what endometriosis is speaking? Yeah, of course. Sorry, I should have done this earlier.

So endometriosis is a chronic condition and it's where tissue that's similar to the lining of your uterus grows in other parts of your body. It can grow in any part of the body and it has been found in, I think every part of the body now. Last time I looked into it was around 180 million women, have the condition, have been diagnosed with the condition. but it takes a long time for diagnosis.

It can take up to eight years for some. And for me and myself, you know, from the first time I went to the doctors to being diagnosed, it took around 10 years. And I'd like to think that things have changed. Now, this was 15 years or more years ago now,

and it hasn't. It's still exactly the same. I think the treatment has changed and there's a lot more awareness. and there's, you know, better consultants for the condition. But awareness itself is just lacking and it's, that's everywhere. Yeah, so it's about one in ten women who develop endometriosis. And like you say, the length of time, the average length of time is many years.

Yeah. So that means many years of suffering and it can start young, like you say. So people are missing school because of it. They're missing jobs or they're not going for promotions or they're leaving their job. And it's very difficult when it's pain that you can't. once seen, if you had a big scar or rash down your arm, you could show people and they would give you sympathy. But it's also something about women's problems, isn't it?

Yeah. You had, it's bad enough having migraine or a pain that could happen in men and women. But when you start to talk about a womb-related or a gyne-related pain, then it's very difficult for people to understand and be taken seriously, isn't it? Yeah, definitely it is, yeah. I don't think that people actually understand. It's like I don't understand some conditions and that's because I've never had to go through that and people don't understand it unless you're walking that path yourself. But the only way people are going to know is by being open and honest, but we're still very reluctant to do that because the fear have been doubted. And a lot of people think that we're just lazy, I think and we can't be bothered. Because even now I struggle with fatigue and body aches and pains and low energy, low mood. And I know people think, oh, just go for a walk, it will help you. But when you're in pain and people can't see that pain, it's so much harder.

Like you say, if I had a plaster or a cast on my leg, for example, then it would be better understood and I'd be better sported. Yeah, and I think it's really sad also when you said earlier about young people, especially you've had a surgical menopause, don't get listened to, don't get understood as well. And I was just reviewing something from an organisation talking about menopause in the workplace, and it was talking about 50 plus. And it did actually say, when I looked at the smaller print, it did say one in 100 women under the age of 40 having early manopause.

How nice of them? But just mention the 50. And on the front of the brochure, it was older women that picked this off. And actually, it's hard enough to have the menopause. Menopause taking seriously anyway. But it's even harder when you're young, isn't it? Yeah, absolutely. No disrespect to you.

You don't look like the average menopause or women. Google menopause. It isn't someone young like you, is it, that you see? No, of course. And so then it's very difficult for people to understand. And for some people in this, they might know that when women have had endometriosis, it can be sometimes quite difficult to get the right dose and type of HRT because estrogen can stimulate any leftover end up.

intrametial tissue. And I have done a podcast talking with Chris Mann, more medically really about treatment, so it might be worth some of you listening to that as well. But it is finding a balance with the hormones so that you can get the good bits for the menopause, but it doesn't affect any endometriosis. Of course, yeah. And that's something that I have had to, well, you know, with support from you, now I feel that I am on the right dose. Some days I do feel that I dip, but it's managing that myself and maybe sometimes I need to add extra estrogen. Some days I've got gel as well as wearing two patches. So some days I will top up with gel or change my patches a day earlier.

But also with endometriosis, if someone's had a hysterectomy, we're not told that we should be taking progesterone as well alongside estrogen because as you said before, estrogen can stimulate any endometriosis that might be left over or that might have been grown or anything. So it can be difficult. And certainly I was looking recently at what various different societies recommend and different experts recommend about giving HLT after his director if someone's had endometriosis because like you say, if you don't have endometriosis and we remove the wound,

then we normally don't give progesterate. but if you've had endometriosis and have surgery, there could be some endometrial tissue left behind. So some people say, well, everyone who's had endometriosis and they have hysterectomy, you should always give progesterone. Some people say you should give progesterone for two years, and then some don't really mention it at all. And I think there can't be any black and white women because every woman's different, regardless of blackisheld endometriosis or not,

but every woman who's got endometriosis is different. And so sometimes it's not very extensive. It's quite local. It could just be on the flopium tubes or the ovaries. The woman has all her ovaries and her tubes and her wound taken out. And the surgeon might be very confident that every bit of endometriosis is taken out. So those women actually probably don't need any progesterone. There might be other women where there is some elsewhere.

And those women, we often do give progesterone too. And often they need progesterone forever. but that's fine as well. But often people with endometriosis really know their pain of endometriosis. So if they weren't on enough progesterone, or they weren't on any and they were getting a bit of flare up, then they know they can add in progesterone. And I've got some patients with very severe endometriosis

despite having surgery, and they use double progesterone. And that really calms down that tissue. And they normally take it every night to keep it all quiescent. And then they can have the right dose and type of estrogen and often testosterone as well. So it's very important that people are in control and they have the right dose for them as well. It's not a one-size-fits-all, is it?

No, of course, no. Not at all. I mean, two years, last January, sorry, I had further surgery for endometriosis and this was two years post-historectomy. And this is just what I was saying before that you know your own body better than anyone. But it's just such a battle to be heard

and understood, it took me at least 12 months to be heard and to get the right surgeon to listen to me after my hysterectomy and find that I had extensive endometriosis, post-historectomy. And it's just such a minefield. But I think if you don't do your own research, you don't be your own advocate, then, you know, you will forever be unheard. So it's pushing for answers, but pushing also for me. awareness. Yes, which is so important and it's awareness not just for women but also for healthcare professionals as well. Yeah. And some of you might have heard already, I didn't have any formal

training about the menopause, but I didn't have actually much training about endometriosis as well. It is quite difficult to diagnose, isn't it? You can't just do a blood test or even a scan, actually. But sometimes you'll never know for sure, but sometimes some of the first level treatments, and sometimes we do give hormone treatments in terms of contracepticill can work really well. Yeah. So actually for some people, they don't have to have lots of operations to have the diagnosis if the treatment's working well for them. And this is where you'll say it's absolutely crucial that women are listened to

because if women are experiencing symptoms, despite being on whatever treatment they're given, then they need to be heard and they need to have the appropriate investigations and treatments as well, don't they? Yeah, absolutely, yeah, definitely. So it is very important that people monitor their symptoms as well because certainly when they're having periods, they often find that, I don't know if it happened with your endometriosis, but it can change throughout the cycle, can't it? Yeah, yeah, definitely, yeah. Do you mean like through the actual period itself? Yeah, that's right.

Yeah, so mine was very heavy. The first three days were especially heavier. And then it would slow down to almost no bleeding. And then the last day I would get a lot of bleeding again. but even though, and it's going into detail, but even like the type of blood that I was producing was inconsistent. I won't go to too much detail. But yeah, I think it's just knowing, you know, what to look for.

And you're not going to know unless you look, even Google, go on Endemitracies UK, look on other sites, forums on Facebook, etc, and Instagram, and do as much research as you can to know what you're looking for. Yeah, some people find it really useful to have a diary actually, because the month symptoms can change. And because estrogen levels fluctuate as well, people sometimes find certain days their pain of the endometriosis

or other symptoms are worse. And then if you have a diary from, say, three to six months, you quite often see there's a cyclical pattern. My husband, as I really said, as a surgeon, his urologist, and he saw a patient recently had some endometriosis tissue on their ureth. so the bit that they wee out of, this woman had gone to all sorts of specialists. And then he sat down and took a very, very clear detailed history and story from this lady. And she was very clear that this awful pain that she was getting only occurred for two days every month.

That was all. The rest of the time she was fine. So no one believes that they thought she was, you say, it was a mental state, something else going on. And then he said, I think you've got an endometrioma, which is, as you know, some of endometrial tissue. Yeah. So he took a bit of theatre, found it, cut it out, and she was absolutely fine, but she'd had about eight years of suffering. And I said, gosh, you're very clever. He said, no, Louise, it's always a little bit more story. You just sometimes need to take a bit longer listening, which is very good,

because he doesn't always listen to me at home. They never do. But that's very important. So I think a lot of medicine, although hopefully as health care professionals, we're good at diagnosing, like you say, if people have the information, then patients can often make some of the diagnosis themselves, which can hopefully mean that they'll get listened to and get the right treatment a bit sooner. Yeah, of course.

So I'm very grateful that you've been so open because it's not easy talking about your own experience. I feel exhausted just listening to you, all the battles. No, I feel so sorry for you because I feel that, you know, you're young, you've been let down, but it's not an unusual story. Yeah, no, it's not.

A lot of women do get treatment quicker, which is great, but there needs to be, like you say, completely different slant with more awareness, more understanding, more education for women, for partners, for healthcare professionals. We've just written a booklet, which you've kindly been helping with on endometeatia. It's in the menopause. And I love the detail. It's been so fantastic. And we've had some great comments that we'll put a link to it in the notes, because I really want to try and help.

help people being a pad of information. So I'm very grateful for you today. No, that's okay. Thank you as well. Thank you for a moment. So just before you go, three tips. So if women are struggling, either they think they've got endometriosis, they have got endometriosis, what would you suggest they do? Well, as I've been signed the whole way through, so, you know, do your own research and be your own advocate, just keep pushing for answers, keep pushing your GP, make them listen, as you said earlier, do a pain diary or take someone with you who sees the pain that you're in every day, so you'll listen to.

And also, even if you haven't yet been diagnosed or you have been diagnosed, just learn as much about the condition as you can because, you know, treatment isn't just surgery. There's change your diet, exercise if possible, but I know fatigue can get in the way of that, vitamin supplements, etc. And, you know, as I see a women's health physio, there's those things. are different things that can help you. And I think most importantly, something that I wish I'd have known about it all known is that a hysterectomy is an endometriasis.

But if it is the right decision for you, then, you know, get some menopause and HRT support and be clued upon that as well and just keep pushing, pushing and pushing. Sure. I don't know if those were three answers. Very well. They were very good. Very good. I know that what you've been through is a lot,

but I also know that you're sharing is really going to help so many people. So thanks ever so much for being so brave and open to date. No, thank you. For more information about the perimenopause and menopause, please visit my website, balance-manopause.com, or you can download the free balance app, which is available to download from the app store or from Google Play.