Raising awareness of endometriosis and surgical menopause with Vicki Shattock

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:

1. Do your own research and be your own advocate, push for answers
2. 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
3. Learn as much as you can about endometriosis; treatments are not just surgical, there’s exercise, diet, physiotherapy, and others
4. 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

Episode Transcript:

Dr Louise Newson [00:00:09] Hello. I’m Dr. Louise Newson. And welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford upon 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.

Dr Louise Newson [00:00:45] So today with me, I thought it’d be really useful to share 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 story. So today I’m very delighted to introduce to you, Vicki. So thanks, Vicki, for coming into the studio today.

Vicki Shattock [00:01:03] Hi, thank you for having me.

Dr Louise Newson [00:01:04] So do you want to just explain a little bit about you and what’s been happening? And then we can just talk through in a bit more detail if that’s okay?

Vicki Shattock [00:01:13] 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 some medication and just said it was part of growing up and just my age, and I’d 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 wasn’t something that 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 21, 22, and I was getting really painful sex, bleeding after sex, and my periods were really heavy, much more heavy and painful than they had 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’d 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 private healthcare, and he said you could always go and ask them for a check-up with someone else. So I pushed to be referred to by a gynaecologist 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 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, the pain, I was having time off work and I was referred to a gynaecologist and I had my first laparoscopy where they found endometriosis.

Dr Louise Newson [00:03:48] So how old were you then?

Vicki Shattock [00:03:49] So I think I was about 22, 21/22. It was around that age. So it was 10 years after I’d first been to the doctors. And they spotted endometriosis; they burnt it away and just said that would be it, I’d be sorted and I wouldn’t need to return. And this continues. 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 a 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, you know, took loads of painkillers, hormone treatments, etc.

Dr Louise Newson [00:04:45] So when you had the hysterectomy, did they remove everything? And did they take your ovaries out as well?

Vicki Shattock [00:04:50] No, they didn’t. I was advised not to have my ovaries taken out and that it would just be a simple hysterectomy, they’d remove any endometriosis and 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.

Dr Louise Newson [00:05:18] And did you know anything about the menopause at that stage because obviously you were young and had anyone talked to you about or did you hear anything from anyone else about the menopause?

Vicki Shattock [00:05:28] Yes. My mom suffered quite badly with the menopause, with symptoms, so I knew vaguely. Well, I knew what it was, but I never imagined that I would, you know, come into the menopause as soon as I did post-surgery. I thought it would be, you know, many years on, I thought this would just stop my periods, not cause other problems.

Dr Louise Newson [00:05:53] So how did you realise that you were menopausal then, because obviously most people know because they’re not having periods. So as many of you listening know, if you don’t have a womb, you don’t have periods. So how did you realise?

Vicki Shattock [00:06:04] So physical symptoms, my skin changed, I was getting a lot of eczema and my eyes and my face just felt dry. My nails were really brittle and dry. My hair was falling out in the shower – washed my hair and it was just coming 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.

Dr Louise Newson [00:06:39] So was it easy to get help for you? Did you manage to go and get some help once you realised what was going on?

Vicki Shattock [00:06:45] 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 come to your clinic, then I think I’d have struggled a lot more than I had. But it took at least probably eighteen months before I got some proper support.

Dr Louise Newson [00:07:09] So that’s a long time, isn’t it?

Vicki Shattock [00:07:11] Yeah.

Dr Louise Newson [00:07:12] You know, just had a big operation. You’re in your 30s, got your life ahead of you and then you’re floored 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 or relative or like you say a healthcare professional, say 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?

Vicki Shattock [00:07:50] Yeah, I felt a relief, but I was still really confused because I had my ovaries and I feel like a lot of younger women who were 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 – 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.

Dr Louise Newson [00:08:30] So really, really hard because as 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 is 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 to be. So you could have had an earlier menopause even if you still had your womb. 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 NICE are very clear that if someone has their ovaries removed at the same time, obviously that means that you’ll go into the surgical menopause and 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, it’s very difficult. And so one of the reasons – well there’s lots of reasons why I developed the balance app – one of the reasons is that you should really be sent home and told, ‘do these symptoms every three months and if they start to change, really alert yourself to the fact that could it be the menopause’. And that might have saved you a few months of suffering mightn’t it, if that had happened.

Vicki Shattock [00:09:54] Yeah, absolutely. And I think actually, I would have been more clued up for the hysterectomy itself. I probably would’ve 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’d have known – I mean, some of it I could probably blame on myself for not researching it as much as I should have done, but I didn’t know where to go for the research. I didn’t know about women’s health physiotherapy. I didn’t know about menopause doctors. I didn’t have a clue. I have changed my doctors and my GP surgery since. But I did go to the doctor 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 fobbed off basically. I wasn’t given any support or help. I just felt like I was – I made this decision myself, and I just follow what my surgeon told me that it would be the best thing for me.

Dr Louise Newson [00:10:51] It’s very hard when you’re on your own, isn’t it? I think as patients we’re 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 is also a doctor, he’s a surgeon. We took it in turns to stay overnight and in the morning I remember I was sleeping just on a campbed next to her in the ward, and I would be too scared to go and clean my teeth or even go to the toilet because I didn’t want to miss the consultant ward round because I knew he’d come very quickly and I was there waiting and 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.

Vicki Shattock [00:11:49] No not at all.

Dr Louise Newson [00:11:50] And my husband felt the same 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 and he said – and because of the curtains, don’t really – you can’t see him but you can still hear. And he said to the X-ray department, I’ve got this very anxious mother here and she’s a doctor, so I feel we should probably do the scan tonight. And I felt 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 in the joint, in her sacroiliac joint. And then they came out and said, she’s really poorly we need to take her to the ward and give her some treatment. And in the morning, actually, he did apologise to me, but I thought actually that was me because I was being forceful 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. 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 and you 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, until later on down the line.

Vicki Shattock [00:13:22] 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, p,oor 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 go through it. Because if I’d have known, and as I said earlier, if I’d have known what I know now about hysterectomy, about endometriosis, about menopause, etc, I wouldn’t have had the hysterectomy unless I was completely clued up on what I was going to 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.

Dr Louise Newson [00:14:27] But talking about it is really helpful. And to those people that listen that don’t know what endometriosis is. Do you want to explain what endometriosis is Vicki?

Vicki Shattock [00:14:36] 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, 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, 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. This was 15 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.

Dr Louise Newson [00:15:41] So it’s about one in 10 women who develop endometriosis and like you say the length of time, the average length of time is many years, so that means many years of suffering and it can start young, like you say. People are missing school because of it, missing jobs, or they’re not going for promotions, so they’re leaving their job. And it’s very difficult when it’s pain that you can’t see. If you had a big scar or rash down on your arm, you could show people and they would give you sympathy. But, it’s also something about women’s problems, isn’t it?

Vicki Shattock [00:16:11] Yeah.

Dr Louise Newson [00:16:14] 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 gynae related pain then it’s very difficult for people to understand and be taken seriously, isn’t it?

Vicki Shattock [00:16:30] Yes, 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 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 of being 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 but 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 be better supported.

Dr Louise Newson [00:17:24] Yeah, and I think it’s really sad also, when you said earlier about young people, especially who’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 have an early menopause. How nice of them! But just mentioning 50 and on the front of the brochure, it was older women. And actually, it’s hard enough to have the menopause taken seriously anyway. But it’s even harder when you’re young isn’t it?

Vicki Shattock [00:18:04] Yeah, absolutely.

[00:18:06] No disrespect to you but you don’t look like the average menopausal women. When you google menopause it isn’t someone young like you is it that you see. And so then it’s very difficult for people to understand that. And for some people listening 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 endometrial tissue. And I have done a podcast talking with Chris Mann more medically really, about treatments so it might be worth some of you listening to that as well. But it’s finding a balance with the hormones so that you can get the good bits for the menopause, but it doesn’t affect any endometriosis.

Vicki Shattock [00:18:46] Of course. Yeah, and that’s something that I have had to well, we 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 somedays 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 regrown or anything.

Dr Louise Newson [00:19:33] So it can be difficult and certainly, I was looking recently at what various different societies recommend and different experts recommend about giving HRT after hysterectomy if someone’s had endometriosis because, like you say, if you don’t have endometriosis and you remove the womb, then we normally we don’t give progesterone. 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, we should always give progesterone. Some people say we 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 ruling because every woman’s different, regardless of whether she has endometriosis or not, 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 fallopian tube or the ovaries. A woman has all her ovaries and her tubes and her womb 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 to, 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 a 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 it’s, they have the right dose for them as well. It’s not a one size fits all, is it HRT?

Vicki Shattock [00:21:28] 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-hysterectomy. 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-hysterectomy. 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 and also for more awareness.

Dr Louise Newson [00:22:18] Yes. Which is so important and it’s awareness not just for women, but also for healthcare professionals as well actually. 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 treatment, sometimes a contraceptive pill could work really well.

Vicki Shattock [00:22:49] Yeah.

Dr Louise Newson [00:22:49] 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 were saying 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.

Vicki Shattock [00:23:12] Yeah, absolutely. Definitely.

Dr Louise Newson [00:23:14] 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 that happened with your endometriosis, but it can change throughout the cycle can’t it.

Vicki Shattock [00:23:26] Yeah, definitely. Yeah. Do you mean like through the actual period itself?

Dr Louise Newson [00:23:30] Yeah, yeah that’s right.

Vicki Shattock [00:23:32] 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 like, it’s going into detail but even the type blood that I was producing was inconsistent. I won’t go into 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 –even Google, go on Endometriosis 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.

Dr Louise Newson [00:24:09] Yeah, and some people find it really useful to have a diary, actually, because throughout the month symptoms can change and because estrogen levels fluctuates as well. People sometimes find certain days the 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’ve already said is a surgeon, he’s a urologist and he saw a patient recently who had some endometriosis tissue on their urethra – so the bit that they wee out of.  This woman has 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, like you say it was her mental state, something was going on. And then he said to her, I think you’ve got an endometrioma which is as you know, some endometrial tissue. So he took her to 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’ and he said ‘No Louise, it’s always there under the 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!

Vicki Shattock [00:25:28] No they never do!

Dr Louise Newson [00:25:29] But that’s very important. So I think a lot of medicine, although hopefully as healthcare 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 of it sooner.

Vicki Shattock [00:25:48] Yeah, of course.

Dr Louise Newson [00:25:49] 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 all the battles.

Vicki Shattock [00:26:00] Sorry.

Dr Louise Newson [00:26:00] 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 unusual story.

Vicki Shattock [00:26:07] No it’s not.

Dr Louise Newson [00:26:08] A lot of women do get treatment quicker, which is great, but there needs to be, like you say, a 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 endometriosis and the menopause, and I love the detail. It’s been so fantastic and we’ve had some great comments. We’ll put a link to it in the notes because I really want to try and help people being empowered with information. So I’m very grateful for you today, Vicki.

Vicki Shattock [00:26:42] No that’s okay Thank you as well. Thank you for letting me…

Dr Louise Newson [00:26:46] So just before you go, three tips – so if women are struggling, they think they’ve got endometriosis, they have got endometriosis, what would you suggest they do?

Vicki Shattock [00:26:56] Well, as I’ve been saying 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’re listened 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 of diet, exercise if possible, but I know fatigue can get in the way of that, vitamin supplements, etc. And you know, as I, I see a women’s health physio, there’s loads of different things that can help you. And I think most importantly, something that I wish I’d have known about or known, is that a hysterectomy isn’t a cure for endometriosis. But if it is the right decision for you, then you know, get some menopause and HRT support and be clued up on that as well and just keep pushing, pushing and pushing. I don’t know if those were three answers.

Dr Louise Newson [00:28:04] No they were. They were very good, very good. I know that what you’ve been through is a lot, but I also know that you sharing is really going to help so many people. So thanks ever so much for being so brave and open today.

Vicki Shattock [00:28:16] No, thank you.

Dr Louise Newson [00:28:19] For more information about the perimenopause and menopause, please visit my website balance-menopause.com or you can download the free balance app, which is available to download from the App Store or from Google Play.

END