Getting your voice heard: Christiane’s story of PMDD, endometriosis and menopause

Content advisory: this episode discusses themes of suicide and sexual assault.

In this week’s episode, Dr Louise Newson is joining by Christiane Gurner, who shares her story of endometriosis and PMDD, highlighting the challenges many women face in getting a proper diagnosis and treatment. Christiane also shares her experiences of IVF and menopause at the age of 42.

The conversation also covers the importance of listening to patients, individualising care and access to the right treatment, as well as the impact of hormone-related conditions on mental health.

Christiane has written about her IVF experiences in the Sydney Morning Herald here (subscription required) and here, and menopause at 42 here. She can be contacted via email at christianewrites@outlook.com.

Click here to find out more about Newson Health.

Transcript

Dr Louise Newson: [00:00:10] Hello, I’m Dr Louise Newson. I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford -upon -Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research, bust myths on menopause symptoms and treatments, and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So today on the podcast, I have someone called Christiane, who reached out to me a little while ago from the other side of the world to me. She’s in Australia, and she told me her story, which really resonated because it’s similar to many, stories that I hear all the time, actually. A lot of it is about women not being listened to, but also women who have more than one diagnosis that often aren’t just put into one diagnostic box and given one treatment and off you go. When it’s more complicated, sometimes it can unsettle and unnerve doctors, and sometimes it can be very difficult to be heard to get the treatment. So Christiane’s very kindly agreed to share her story so it can empower others and make changes to other people’s lives going forward. So hopefully they don’t suffer as long as you have, before you finally feel better. So welcome from Melbourne. [00:01:57][106.9]

Christiane Gurner: [00:01:59] Thank you, Louise. And thank you for all the amazing work you’ve done for decades, long before, you know, that menopause was in the zeitgeist or being spoken about. [00:02:08][9.3]

Dr Louise Newson: [00:02:08] Thank you. So you, like many women actually, have endometriosis, which I’ve spoken about on the podcast before, and I’m sure I’ll speak again. And some statistics say that it can take a decade for people to have a diagnosis and many, many consultations before the diagnosis is made. And that’s sometimes because it can be difficult to diagnose, but it’s more commonly because people aren’t understanding endometriosis and the effect that it has on people. So do you mind just sharing a bit about your story? [00:02:44][36.0]

Christiane Gurner: [00:02:48] Not at all. And I just want to point out at the outset that I definitely don’t want to make it just about me. I know there are so many countless women in my position. And yeah, this is the story of so many, which is really sad and actually quite tragic. So yes, you’re right, it took about a decade for me to be diagnosed. And by the time I was, and I just normalised the pain as well. So I just thought it was me and that, you know, my, other people responded to simple painkillers and I must have been in some way defective. So yeah, that was really terrible. And by the time it was diagnosed, I ended up having an ovary removed as well as appendix and also a punctured bladder surgery as well, which also I wasn’t believed about until mum took me back three times to emergency. So yeah, there’s, it is a story as old as time, I think. And that I probably had around 10 laparoscopies after that. And every single time, the sense of not being believed, I also went to a few different specialists, some of them incredibly, you know, at the top of their field and still being told this is chronic pain or, you know, this is normal. And I like to think I have a fairly high pain threshold. So, but as I said, you just normalis the pain, the moods. However, luckily I was very fortunate to come across Professor Jayashri Kulkarni, who, as you know, spoken with and her very important work around women’s mental health and hormones. And I was diagnosed with PMDD in my mid -20s. And that was very helpful, but still despite, you know, the ongoing endometriosis and all sorts of medications, tried HRT before my hysterectomy, but ultimately ended up doing IVF on my own, partly for that, yeah, given the history of all the surgery. I have no doubt that’s why I was single, just feeling, and I still am single, feeling quite, and I don’t mind saying that, I mean, I’ve basically been single for two decades, I think largely given that sense of brokenness that you feel having, you know, that physical as well as psychological disease, I guess. [00:05:09][141.2]

Dr Louise Newson: [00:05:10] So PMDD is premenstrual dysphoric disorder, and it’s a more severe form of PMS. And PMS, premenstrual syndrome, probably affects about 90 % of women. There’s very few women who don’t have any changes before their periods. And before the periods, as you know, is when hormone levels are at their lowest. And so a lot of people I see and speak to who have endometriosis, also do have some PMDD as well. And the more I think and treat and talk to women with endometriosis, the more I think, or I’m interested to know how much of a hormonal disorder it is and how much it’s related to low progesterone and possibly low testosterone as well, because those hormones are very anti-inflammatory. And traditionally, when we talk about hormones, it’s always about oestrogen being the building block, oestrogen is the important bit, oestrogen, oestrogen, oestrogen. But actually, these three hormones are independent. They’re as different as, you know, other hormones in our body. They’re always lumped as sex hormones, but they don’t define us, our sex or our gender, because men have the same hormones, too. And a lot of people I speak to do respond very well to testosterone and progesterone, and maybe less oestrogen or no oestrogen, depending on the individual situation. And it can take a long time, as you say, to diagnose endometriosis. But it also, even when it’s diagnosed, the treatment really varies between women. And, you know, the surgeons will say it’s all about surgery. Other people, if you go to a pain clinic, they’ll say it’s all about pain control. If you go to a psychiatrist, other than Professor Kulkarni, they’ll say, oh, it’s all in your head, so you can just, you know, put up with it. And then other people say, well, just take out your womb and your ovaries. If you take out the ovaries, you’ll have no hormones and therefore you’ll be fine. But actually, that’s not always the right thing either, is it? [00:06:57][106.5]

Christiane Gurner: [00:06:58] No, it’s not that simple. And the reason I ended up fighting so hard to have a hysterectomy was literally listening to your podcast with Dr hannah Short, the GP, in, I looked up this morning, in 2022 it was. And it just gave me, her story was very similar to mine. It was just untenable to live with the PMDD, the way it was for her. And she fought to have a hysterectomy, as I did. Unfortunately, even though my specialist was excellent and very senior, he still, I mean, he had reservations for the right reasons, but just the, I guess the lack of knowledge doesn’t help. But I remember him saying, well, if I do hysterectomy, it will shorten your lifespan by five years. And I said, oh, what? And he said, well, given the cardiovascular risks. And then he proceeded to calculate how old my son would be when I died. [00:07:55][57.5]

Dr Louise Newson: [00:07:56] Oh my goodness. [00:07:56][0.4]

Christiane Gurner: [00:07:57] This is true. And so I sat there and took all that in. And it was only afterwards speaking to someone that I thought, gee, that was a terrible thing to say to someone because it left me in an impossible position of my quality of life being so poor and big surgery that, you know, holds a lot of grief as well. So in the end, he agreed based on the psychiatric support, letter of support, but we retained one ovary. And of course, because the ovary is producing the hormone, that the PMDD continued. And so I fought again a year later to have that ovary removed. And I’m now an HRT and the Prometrium, the bio-identical progesterone. Yeah. So it’s been, it’s been a lot. And that was two years after having my son, I had the hysterectomy after being told that pregnancy cures endometriosis, which is another old wives’ tale because it clearly doesn’t. And, you know, that’s where you almost gaslight yourself, just thinking, is this me imagining the pain and being told by doctors it’s not there? And it was though, as well as adenomyosis. So yeah, you’ve just got to trust your own body, I guess, but that’s impossible in the face of really experts who I’m sure are well-meaning, but it takes a toll. Yeah. [00:09:24][87.4]

Dr Louise Newson: [00:09:25] Of course it does. And I, you know, one of the first things I learned as a medical student is listen to your patients. The patient will always tell you, but you have to ask the right questions. But also, you know, patients don’t come to the clinic or they’ve never come to see me as a doctor, making things up. There’s no psychological advantage of having symptoms. And sometimes it can be really difficult. One of the things I learned, actually in general practice, in hospital, you’ve always got other people you can ask, you’ve got tests, you’ve got investigations really on your fingertips that you can always try and explore more and more. Whereas in general practice, when you’ve got 10 minutes, you can’t order scans left, right, and centre. You don’t always know. But actually dealing with uncertainty is something that’s really, really important as a doctor and sharing that uncertainty. And I’m a very honest person. And so I’m always very honest with my patients. And actually, my trainer, a long time ago, John Sanders taught me that it’s okay to tell people that you don’t know what’s going on. And the first time I did it, I thought, oh, gosh, they’re going to think I’m a really bad doctor. But actually, it’s not that it’s, you know, sometimes you don’t know, or you think, well, there’s maybe two or three different things going on. And so I’ll often say to patients, you know, look, there is a lot going on. I think you might have X, you might have Y, we could do A, we could do B. Let’s just do it in stages. But I might not be able to help everything. But I’m certainly going to work with you. And let’s explore all possibilities. And that way… [00:10:58][93.8]

Christiane Gurner: [00:10:59] That would be a relief. That would be a relief for patients. [00:11:02][2.7]

Dr Louise Newson: [00:11:02] I think people, and I know having been a patient quite a few times, you just want to feel validated. And you want to feel that someone understands you. And also that you’re not making it up. Yeah. There’s nothing worse than being told, it’s all in your head. Yes. Or someone trying to make a different diagnosis to suit their agenda. You know, I know long, well, a few years ago now, my daughter had sepsis in her sacroiliac joint and she presented with awful, awful pain in her hip. And I had to take a casualty at three in the morning because she was in so much pain. Well, I couldn’t take her, she was, I couldn’t mobilise her. She had an ambulance, but we got there and the X-ray was normal. And the consultant said to us, Oh, I think she just needs some physiotherapy. And I looked at her and she’d started vomiting at this time and was in so much pain. And I looked at the consultant and said, what makes you think when she’s had no injury that physiotherapy is going to help this 12 year old girl who’s clearly quite unwell? Could you not even take a blood test? And then she went, Oh, okay. We’ll keep her in until the morning ward round. But it was that whole, and we sometimes talk about this as a family, because if I wasn’t medical, I would have just gone, Oh, okay, then I’ll take her home. And I know she probably would have died because she was so poorly in the days after, but that’s quite an extreme case. But actually it would have been okay for that doctor to say, gosh, I don’t really know what’s going on. Maybe some physio would help, but she doesn’t look very well and she’s got worse in the hour that she’s here. Let’s just keep an eye on things. And I’ll ask my colleagues in the morning. That would have been fine. So it’s the way that we talk. And the more I look at the gender inequality, there’s so much more that women are misunderstood. You know, it’s the women that have multi, you know, system disorders, women who are complex, women who have personality disorders, women who, you know, have all these medications, women, women, women. But actually what’s different about us is that our hormones are often changing all the time and we’ve never really been used in proper experiments or, you know, clinical trials because our hormones exclude us because they’re too complicated. And that makes it really hard. And then with some conditions, including endometriosis, synthetic hormones have been given, which aren’t the same as natural hormones. And, you know, some people say, well, oestrogen will flare endo, which it often can do, but what about the other hormones? What else are we doing? You know, and it’s that individualisation of care that I think has been missing for so long. And women are just given layers and layers of diagnoses, often inappropriate medication. And then what do you do? Who do you go and see if no one’s really addressing the problem properly? [00:13:52][169.6]

Christiane Gurner: [00:13:53] I know. And that’s where people like me end up. I mean, I’m a researcher, but I’m not a doctor, though I feel at times I’ve had to educate GPs. And like Professor Kulkarni has mentioned many times that women like me, thankfully I haven’t, which is why I’m incredibly grateful to her, but being diagnosed with bipolar disorder and put on antipsychotics when it’s a hormonal condition. And that hasn’t happened to me, but the shame of not being believed has a severe mental health impact and I think is traumatic for many of us. I’m sort of coming to terms with it now that I’m looking back, I’m almost 44. And as I was saying to you actually earlier, I’m starting to feel angry. I’m not an angry person, but I thought we’d just got through another HRT shortage. And as of yesterday, I’ve just spent hours on the phone again, trying to source oestrogen patches. I’m on quite a high dose, twice a week. And yeah, the mental load of that for women is enormous. And yes, the good thing is women are speaking about it. And as you’ve said, in Australia, there are a number of journalists who are going through perimenopause and menopause in real time. So like Mamamia, the media company by Mia Freedman is doing a lot of work on that. And obviously Professor Kulkarni, but there isn’t, you know, what do you do? You’ve got nowhere to go if there’s no supply. And it really is a human rights issue. I’m not sure if it’s going too far to say that, but… [00:15:33][99.9]

Dr Louise Newson: [00:15:33] I don’t think it is actually. We’ve had shortages over here and actually in my paperback book, one of our pharmacists Hayley has written about what to do with a shortage. And actually at the minute in the UK, there isn’t a shortage, but I have, I’ve just changed my patches today and I realised I don’t have any more and I’m going away at the weekend. And I mean, I will be able to get a prescription, but it’s still like actually, and it’s not, it’s just the fact that I know that I will get migraines without my patches. I know I won’t be able to think and function. So it’s not, like a lot of people think it’s just a lifestyle drug. It’s just a nice to have rather than a need to have medication. And this is where hormones, I think, are just not taken seriously enough. You know, the work that Professor Kulkarni does is so important looking at the mental health aspect of the menopause and perimenopause and PMDD obviously and PMS. And we’ve just written a paper together because we have to address the importance of mental health. We can’t just be layering on sticking plaster. And a couple of days ago, I did an event for an NHS mental health trust. And it was an interesting audience because there were just women from the public there, there were consultant psychiatrists there, and there were some mental health workers. And afterwards, I spoke to some of the, some of the people and one of them, a consultant psychiatrist who specialises in psychosis. And she was asking me about the role of hormones. And she said, I’ve never really thought about it, but actually I wouldn’t have no idea how to prescribe HRT. And I’m really scared of prescribing HRT. And I’m just like, well, you have to learn. It’s really important because there’s really good evidence. And actually they are safer than a lot of antipsychotic medication. And antipsychotic medication will increase prolactin, which they always test prolactin levels, and higher prolactin will reduce FSH. So it will give people a chemical menopause. So if they’re not menopausal before they will be with the drugs that you’re prescribing. And so she was like, I need to listen. I need to learn. I need to do your education programme. So she went off, you know, wanting to learn more, which is wonderful. And then there was another lady who’s a patient. And she said, I’ve been diagnosed as bipolar. I know I’m not. They talk about psychosis, but I know it’s related to my hormones. It’s taken years to be listened to and believed. How do I get my voice heard? And that’s really difficult, isn’t it? [00:18:06][153.1]

Christiane Gurner: [00:18:07] It is. And people, I mean, I’ve heard, read in some of Professor Kulkarni’s work, there’s suicidal outcomes in these situations. I luckily wasn’t, but I mean, it’s taken years and years and the stress of trying to, I’ve got my son screaming in the background on the phone to the pharmacy who’s basically saying, no, we’ve got none. And of course, everyone will be different in terms of what dose they’re on, but I’m on quite a high dose because I’m young and it seems to be working. I’ve never had a hot flush. And that’s the other thing. It is so individual, isn’t it? I mean, the stereotypes around hot flushes. I mean, what happens to me will be completely different from what happens to another friend. And, but so far it has been really positive and I don’t have endometriosis, you know, and I don’t have pelvic pain, but I was sent off to pelvic physios by surgeons, just assuming it was, which is, you know, a very good resource, but in my situation was inappropriate. And you know, decades ago, it was quite invasive, not around consent and quite traumatising. And that was all to prove that actually, no, there was no issue with my pelvic floor. It was, it was endo. So that’s really devastating, similarly in pregnancy. I was so lucky. And after seven rounds of IVF on my own, I had my son who’s now five and the endo persisted after having him. And that was, yeah, a surprise given I’d been told that pregnancy would cure it. So yeah, you’re just managing it all life stages, trying to, you know, as a younger woman, you know, around sexuality, as a mother, still trying to manage the pain. And now I mean, menopause and, and that’s actually better. And as Professor Kulkarni would say, and we weighed up the options, the PMDD and the pain of endometriosis were worse than the prospect of menopause. So, and that has been the right choice for me. [00:20:13][126.4]

Dr Louise Newson: [00:20:14] Yeah. Which is so important being so involved with decision making than knowing that the treatment that you’re having is right for you. But I mean, having all those rounds of IVF by yourself, just bringing up a child by yourself, it’s not easy, is it? [00:20:30][16.1]

Christiane Gurner: [00:20:30] No, it’s not. And it’s, in some ways, the baby, you know, everyone warns you that oh, you’re not going to sleep again and everything. And I think for the first few years and definitely while I was breastfeeding, my hormones were great for the first time in my life, which I’m sure you know about. And then I fell off when I had to stop because of surgery. That’s when the endo and those problems started occurring. But yeah, he’s amazing. And I used an anonymous donor. Unfortunately, there’s an enormous shortage of donors now in Australia. I’m not sure about the UK, but given in Victoria, at least where I am, the legislation changed a couple of years ago, which meant that donors are allowed, can be identified when the child is 18. So that understandably really deterred a lot of men from donating. And I mean, I think when I was looking at the database, like you’re shopping for something, that’s not a donor. There were about eight donors at that point. And I am very efficient in sort of a bit of a, I don’t know if it was my background in research, but I chose one that was perfect for me. And I’m incredibly grateful. And one nice thing I don’t think I mentioned to you was we’ve met two of his donor siblings who are twins, his age. So the same donor and this wonderful mum, and they live about 40 minutes away. So that’s a really beautiful thing. But yeah, complex and emotional. And I think bringing up a child when I’ve still got residual health issues, given the aforementioned history is tough. I don’t want him to look back and think of me as, my mum is struggling or disabled, but hopefully, all he knows is he’s got a mum and a nana and a donor and he’s happy with that. [00:22:29][119.0]

Dr Louise Newson: [00:22:31] And I think just to pick up on you saying about the consultant that you’ve seen, saying that if you have a hysterectomy, it will shorten your life by five years. Firstly, no doctor has a crystal ball. We have no idea what we’re going to die from and no idea. What we do know from the evidence is that when women have a surgical menopause or a earlier age, the longer they are without the hormones, the greater the incidence of diseases and an earlier death as well. But, and this is a real but, if people have replacement hormones, then that reverses because all you’re doing is not replacing, you’re just giving back what your body would be producing. And actually a lot of people who have an earlier menopause, if they’ve had some hormonal insufficiency, actually you’re giving appropriate hormone doses back, probably their prognosis will be even better because a lot of women are spluttering a bit with their hormones, not producing as much. So you’re giving back a really good physiological dose and our hormones are very active biologically. And so the research hasn’t been done because so little has been done on proper body identical hormones. [00:23:39][68.1]

Christiane Gurner: [00:23:40] I tried to find it. It’s not there. [00:23:43][2.6]

Dr Louise Newson: [00:23:43] No, but it makes complete physiological sense actually. And we know that older women who take HRT have a lower risk of diseases, a lower risk of an earlier death. They usually live longer and healthier because it’s actually not the age we die anyway. It’s our journey to that age. We could all live longer, but be more unhealthy and none of us want that. And so I think for anybody to try and talk about life expectancy to patients, unless they know something I don’t, it’s impossible to say. [00:24:15][32.0]

Christiane Gurner: [00:24:16] It was cruel, yeah. And until I spoke to Jayashri and who said exactly as you did, and the benefits of HRT in terms of cardiovascular health are undeniable in itself. It’s not for the specialist. I remember speaking to a psychologist and her saying, well, it’s not for him to decide whether your quality of life is worth even if it is five years. And in the end, the whole five years thing, as you say, is very theoretical. Yeah, but it was a terrible, the guilt around that was, I’d already had my child. Which mother or what sort of parent would ever accept dying five years younger? And as you say, my hormones are actually more stable now than they have been since I was 12. So there you go, if anyone’s wondering. [00:25:04][48.1]

Dr Louise Newson: [00:25:04] So good news at the end of a very long over 30 year old journey that it’s worth persevering because people can get there in the end. And even when you feel it’s insurmountable or impossible to feel better, often finding the right clinician, finding the right treatment for you as an individual can work. So I’m very grateful for your time, also your honesty as well, because I’m sure your story will resonate with lots of people and hopefully give that fire in their belly to really be listened to. [00:25:35][30.6]

Christiane Gurner: [00:25:35] Thank you. [00:25:35][0.0]

Dr Louise Newson: [00:25:36] So before we finish, there’s always going to be three take home tips at the end of the podcast. So three things that you feel if people have listened and felt gaslit really or cheated on with information or an incorrect diagnosis or something doesn’t feel right from the clinician that they’ve been seeing, what three things would you recommend women to do? [00:25:56][19.6]

Christiane Gurner: [00:25:56] So I think the first one I thought of was just educate yourself or listen to women’s stories. I don’t mean on TikTok. I’m not on TikTok, but I mean listening to evidence -based podcasts like yours and your website and information. And yeah, we need more of that in Australia, but luckily we’re now all connected, which is great. And I think talk to your daughters and nieces and I get on my soapbox if I ever hear young women in pain. And I think it’s sharing stories like women always have is really powerful. And that’s how I came to have the strength. As I said, listening to your podcast and hearing Dr hannah, that was incredibly powerful. And I also think speaking to men, I had coffee with a lovely man in his early 40s last week and mentioned your podcast. And I didn’t say your name because I just was a bit the stigma, I think, of mentioning menopause, even me. And he said, oh, is it Dr louise Newson? And I said, yes. He said, oh, I heard her on a podcast and I forwarded it to my mum and my sister. So there you go. So I think just talking. And the second thing was push, I know it’s easier said than done, but pushing back against that medical gaslighting because the impact, as I’ve tried to describe, is you know, the impact on the trajectory of women’s lives is so pervasive. So don’t let the shame of being not believed stop you from believing in yourself, is what I’m trying to say. [00:27:36][99.9]

Dr Louise Newson: [00:27:36] That’s really important. [00:27:37][0.4]

Christiane Gurner: [00:27:37] Yeah. And the third thing was, which is an unusual thing to say, but you’re not broken and I am trying to take my own advice, but it’s the system and the structures that are often broken. And I’ve come out of this and it’s, as I said, now with hindsight, looking back, doing a lot of work around why I feel like that. And the processes of being misdiagnosed, of not being heard, of the shame, a lot of shame around women’s health anyway, the trauma associated with IVF even can leave you feeling, you know, for men and for women, incredibly broken. And add to that trauma, which I don’t mind saying, I hadn’t connected a sexual assault in my early 20s, add that to the mix of the physical and emotional impact of the other. And I don’t use the word trauma lightly, of the trauma of gaslighting in medical misogyny. I think, yeah, just retain that sense of self and you’re, I’m sure many people do feel broken. I’m sure many, there are many millions of women, or thousands like me. And yeah, just remember it’s the systems and the structures. It’s not you. Yeah. [00:28:57][79.6]

Dr Louise Newson: [00:28:57] I think that’s such a powerful way to end. And thank you so much for sharing so many really intimate things actually about yourself, because people will be able to just think in a different way. And I think just not internalising it and blaming yourself for everything is really crucially important in everything that we do actually, because as women we often take so much. And I think to know that actually it’s not your fault the way you feel. And that there are people that can help you, but it’s fine to get a second, third, fourth opinion. That’s absolutely fine as well. So I’m very grateful for your time today. And I just hope this is going to help lots of people. So thank you again. [00:29:40][42.5]

Christiane Gurner: [00:29:40] No, I’m very grateful and best of luck to everyone. [00:29:43][3.0]

Dr Louise Newson: [00:29:44] Oh, thank you. You can find out more about Newson Health Group by visiting www.newsonhealth.co.uk and you can download the free balance app on the App Store or Google Play. [00:29:44][0.0]

ENDS