Program: Girl, Interrupted: the extreme emotions of PMDD

Sana Qadar: Just a heads up, This episode touches on the topic of suicide. Take care while listening.

Sana Qadar: There are 24 hours in a day, seven days in a week, 52 weeks in a year, except for the parts where you're sleeping, you have all of that time to get stuff done, earn money, take care of your kids, see friends. But not Laura Murphy. For about two weeks each month, she was basically non-functional.

Laura Murphy: I would sleep for, you know, 14, 15 hours a night, wake up, have breakfast, and then need to go back for a nap again and literally couldn't keep my eyes open.

Sana Qadar: She would also be paralysed by anxiety and depression.

Laura Murphy: I'd have multiple panic attacks a day and the depression was just exhausting to feel, you know, like the bottom of just dropped out of your world for a week. And she.

Sana Qadar: Was irritable beyond words.

Laura Murphy: You know, storming out of the house at 3:00 in the morning, sobbing, crying, you know I to look at my partner. And again, this is really, really common. I used to look at him and I used to just think, well, I don't love you. I don't even know who you are. I don't want to. Why are we together? I don't know where we are together. I think we should probably just leave it now. Yeah. And he'd be there going. What are you on about? Like?

Sana Qadar: For so long, Laura didn't know why she was like this for a portion of each month. It took 17 years and a period of feeling suicidal before she learned what she had was PMDD, premenstrual dysphoric disorder.

Dr Rosie Worsley : So PMDD is essentially a really severe form of PMS with a focus on some of the more emotional psychological type symptoms.

Sana Qadar: But PMDD isn't really well known, and it means women wait on average, 12 years for diagnosis and treatment. So this episode isn't just a story of the emotional chaos caused by PMDD. This is a story of loss, loss of a life that could have been so much fuller, a career that could have been, of financial stability that should have been.

Laura Murphy: I remember after surgery thinking, oh my God, you know, do people realise how lucky they are to have four weeks a month to get stuff done?

Dr Rosie Worsley : Another very similar woman told me afterwards that she'd always actually dreamed of being a teacher and she'd never been able to do that before because she couldn't reliably do a job every day of the month.

Sana Qadar: This is All in the Mind. I'm Sana Qadar. Today an episode from our archives about the roller coaster of PMDD and why there's debate over whether it's even real.

Sana Qadar: Back in her uni days, Laura lived with a group of three other girls.

Laura Murphy: And all three half live in boyfriends

Sana Qadar: And they had a bit of a running joke about her.

Laura Murphy: So became really scary when I was due on and it was all a bit of a bit of an in-house joke, you know.

Sana Qadar: What were you like the rest of the month?

Laura Murphy: Well, I think generally I was quite a happy person, but also I was a very sort of anxious, timid person because of all these things that were happening, you know, during that that week, because obviously you're feeling lots of shame and stigma about, you know, why you're behaving the way you do, especially when didn't have, you don't know what you're dealing with. You just think you're messed up or I just thought I was messed up, rather. And I probably didn't realise how bad it was until I was 27. And my partner at the time who was living with broke up with me and said it was like living with a different person for a week, a month, and that he didn't want to have to look after someone.

Sana Qadar: Over the years, Laura had been told by multiple doctors that what she had was just standard PMS.

Laura Murphy: Just PMS, It's part of being a woman. Everyone else kind of deals with it, so you just have to learn to deal with it. So I thought I was just very weak and broken and a bad person and couldn't cope with life like other people. And that's honestly what I believed.

Sana Qadar: But this is what her life looked like. This is how our PMDD would unfold, especially as she got older and the symptoms got worse.

Laura Murphy: It was taking over about 11, 12 days in a really deep, sort of unable to really function depression. You know, there was 2 to 3 days kind of sliding into it where you'd start to when my boyfriend would be saying, Are you okay? And I'd be like, Yeah, I'm fine. And he'd say, You haven't spoken in like hours. And, you know, your eyes kind of look blank. And this this happened every month. And then I'd start to stutter again. My words muddled up. Then I'd start getting teary and then kind of decline. And then that would kind of go until the period started. And then, you know, within like a day or two, it's kind of was like this black veil kind of lifting. It's just such a bizarre experience. And it honestly, it felt like going through a bereavement every month, like my chest would just hurt with pain and suffering and you'd sob and sob and sob and you'd know deep down that it wasn't because of anything, if that makes sense. But you just felt so much pain that you couldn't stop it. It's such a such a strange one.

Sana Qadar: This cycle made it impossible for Laura to hold on to a steady job.

Laura Murphy: So I just lost all my confidence and just temped. I went from job to job to job, just sort of trying to keep afloat for many, many years. I never wanted to be that person going through, you know, HR rigmarole, you know, because of sick leave and things. I never wanted that. So I just completely avoided being in a place where that would happen.

Dr Rosie Worsley : So a lot of the women that I see basically can only work for two weeks a month.

Sana Qadar: This is Dr. Rosie Worsley, an endocrinologist based in Melbourne.

Dr Rosie Worsley : So they're essentially non-functional for the 1 or 2 weeks before their period, and then they spend their functional weeks trying to catch up from all the things they couldn't do. So that's in the really severe cases. People just find it, it really impacts all aspects of their lives and it severely impacts them economically as well because a lot of them cannot keep down full time jobs. It often puts a lot of strain on relationships as well as you can imagine. And it it often puts a lot of strain with parenting as well. So it makes women have a lot of, you know, maternal guilt over having these symptoms around their children.

Sana Qadar: So how common is PMDD?

Dr Rosie Worsley : The prevalence is thought to be somewhere between 3 and 5%, but there's probably around 20% of women that have bad PMS. So there's a lot of women that probably suffering, but the really severe ones who have the very bad depressive or irritability symptoms probably about 5%.

Sana Qadar: And just to just for someone who might be completely learning about this, fresh from hearing about it on the show, how is that different from PMS?

Dr Rosie Worsley : So PMS is basically a more lax definition. It's really a catch all term for symptoms that you get in the week before your period, which tend to disappear once you get your period. So PMDD is essentially a really severe form of PMS.

Sana Qadar: The tricky thing with PMDD is it's not like there's a blood test that can tell you, aha, yes, you have PMDD. To diagnose it, you have to track your symptoms over time.

Dr Rosie Worsley : So there's quite a strict number of diagnostic criteria. And essentially you've got to have one of the core symptoms. So that could be mood swings, it could be anger or irritability or it might be anxiety. So one of them and then five symptoms drawing from a bunch of other ones. So things like difficulty concentrating, change in appetite, feeling overwhelmed and sleep disturbance as well. And what you're trying to see is that you've got lots of symptoms in that week before your period and then within a few days of getting your period, all those symptoms disappear. It's really quite a striking pattern when you see it technically for the diagnosis, you should be tracking for at least two months. Most women that I've seen have tracked for many months or years, and it's quite an obvious pattern.

Sana Qadar: For Laura, it wasn't until her early 30s that she even learned what PMDD was. This was a really dark time for her. She had about an 18 month period of feeling suicidal.

Laura Murphy: And it was at that time I started seeing a therapist. She's the one that kind of said, this isn't PMS like I don't know what people have been telling you, but this, you know, you know, this isn't it. And it was that day that I think I went home and I Googled PMS and suicidal and PMS and depression and up popped PMDD.

Sana Qadar: Laura describes that moment as life changing.

Laura Murphy: To sort of see all these mirrored experiences, like there's all these people just like me going through exactly the same, you know, life patterns, the losing jobs, the losing partners, the struggling.

Sana Qadar: And then she realised there were specialists that could help her.

Laura Murphy: You have to kind of go through your GP and I'd gone and sort of said that I'd got close to ending my life that previous month, but thankfully that was kind of enough for her to say, Yeah, okay, I'm going to refer you. And yeah, I went to see the wonderful Doctor Penny in London, a specialist gynaecologist, and yeah, he's the first ever professional I've sat down in front of in 17 years, had said, you know, yeah, this all is textbook.

Sana Qadar: And so how old were you when you finally saw him and was told, this is PMDD?

Laura Murphy: I was 34.

Sana Qadar: 34. So you had lived with this since you were 17?

Laura Murphy: Yeah.

Sana Qadar: That is such a long time to go through the upheaval and trauma of that every every month.

Laura Murphy: Yeah, it's. It is a very long time and it's exhausting. And straight from that appointment, I went out into the front of the hospital and sobbed on the street because I think I was just so relieved to I mean, one have the diagnosis, but I already knew I had it. As soon as I read about it, I was like, That's me, I know that's me. But secondly, I think just to have a health care professional just say it out loud and agree with you was just so validating after so many years of not being heard.

Sana Qadar: So the question is, what is going on in the brain, in the body that causes this extreme response to the menstrual cycle? Well, to answer that, we need a bit of a refresher on what happens to hormones during the menstrual cycle.

Dr Rosie Worsley : Essentially, if we talk about the menstrual cycle, we divide it into two phases the follicular phase and the luteal phase with ovulation in the middle. So the start of the follicular phase is when you have your period. Then you ovulate and then you have the luteal phase in the follicular phase. When you've got your period, you have low levels of oestrogen and basically no progesterone.

Sana Qadar: And what do progesterone and oestrogen do?

Dr Rosie Worsley : Progesterone. Its main role is about preparing the lining of the uterus for pregnancy.

Sana Qadar: As for oestrogen, it also helps regulate the menstrual cycle and it has an effect on mood.

Dr Rosie Worsley : So it tends to improve mood. It has something like an antidepressant effect.

Sana Qadar: And in case you didn't know, oestrogen is made by the ovaries and progesterone is made by something called the corpus luteum

Dr Rosie Worsley : Which is basically the egg that's going to be released

Sana Qadar: Which actually also comes from the ovaries. Anyways, before you have your period, there's a rapid withdrawal in both these hormones.

Dr Rosie Worsley : The interplay between hormones and the brain is really complex. Essentially, just about every tissue in the body and many parts of the brain have receptors for both oestrogen and progesterone. And so what we think that might be behind PMDD is that there's some problem in the way the receptor is responding to changing hormone levels. It doesn't seem to be a problem with hormone levels. The levels seem to be the same as everyone else. It's really a receptor issue.

Sana Qadar: But Dr. Worsely says researchers are still pretty hazy on a lot of the details of what exactly is going on.

Dr Rosie Worsley : I think there's a lot we do know and there's a lot that we don't know. So I always say to women, just remember, it's got more holes in this theory than Swiss cheese. So if you come back to this in ten years, it might be totally different.

Sana Qadar: So what do we know?

Dr Rosie Worsley : There's also different schools of thought. So the Americans in particular are very focused on serotonin and there does seem to be issues with serotonin transmission. Whereas if you look more at the Scandinavian European research, they're much bigger into the neurosteroid aspect. And so I basically follow what the Scandinavians say. I think they're very sharp on this area. And basically what they found is that progesterone is metabolised into another hormone called allopregnanolone. So I'll just call that Alo and Alo acts on the same receptors in the brain that Valium does. And basically in the same way that about 5% of the population will have an irritable response to Valium. Instead of feeling chilled out, they'll feel really anxious or irritable. About 5% of women have this type of response to Allopregnanolone. So that's certainly one mechanism that we know of. There are probably other mechanisms that that are out there as well. One of the difficulties in clinical practice is there's no way to tell. There's no test that says, yes, you're definitely reacting badly to your progesterone or you're reacting to a change in your oestrogen level or both. So that's why there's so much guesswork involved.

Sana Qadar: And why do you lean more towards the Scandi sort of version versus American?

Dr Rosie Worsley : It's very convincing research. I mean, you can show these things in mouse models. There's very good clinical data. And now they've also, there are some medications in the pipeline which will target these pathways which seem to be effective. So I think possibly the Americans are coming around to that. But it's still, when there's so many pieces of the puzzle missing, you don't really know what we're going to land on eventually.

Sana Qadar: Yeah. Have those medicines been tested on humans yet, or where are they in the testing cycle?

Dr Rosie Worsley : Yeah, they're in clinical trials. So there's been one clinical trial thus far.

Sana Qadar: So how far would that be from, you know, being used widely?

Dr Rosie Worsley : I think we're talking about years because it's a manufacturing issue as much as anything else. Presumably they'll need larger scale studies, but it is very hopeful. And I think for a lot of women, it's very hopeful that, you know, if their daughters face the same issues, they're going to have completely different treatment options available to them.

Sana Qadar: And in terms of why some women get PMDD and others don't, do we know at all?

Dr Rosie Worsley : No. Look, there's clearly a genetic component in that it often runs in families quite strongly. There seems to be a link with early childhood trauma as well. So lots of women have had intense stress early in life, but certainly not all women. So that may. There's some sort of role there as well. But essentially, no, we don't really know. And I don't think we really know the nuts and bolts of of this issue with the receptor.

Sana Qadar: Part of this lack of understanding has to do with the usual issues that plague women's health. Their pain is dismissed. Research lags.

Dr Rosie Worsley : I really think this area is 30 or 40 years behind other areas of medicine.

Sana Qadar: There's also long been a debate about whether PMDD actually exists as a condition, whether it should be labelled as a mental disorder.

Laura Murphy: I know there's been lots of discussions about, you know, it's pathologizing the female experience, but I kind of think, where's the line with that? Does that mean that if you have women in postpartum psychosis that they shouldn't get help or it shouldn't be labelled because it's a natural human experience? Why is one different to the other? And it's because, you know, it's kind of stuck between periods and mental health and this whole throwback and stigma of female hysteria and the fact I think it's linked to PMS as well, that's just not taken seriously.

Dr Rosie Worsley : Look I think there's always that tension of, well, you know, I like to think of myself as a feminist. So am I just saying that women's it's all their hormones. Is that sexist? And I think my answer to that really is the mistake in that thinking is to think that men's thinking is not affected by biological stimuli. You know, we're all psychological beings. We're all biological. And the biological has a significant impact on our psychological health and well-being. And with PMDD, there's a lot of physical symptoms as well. It's not just that the focus is on the mood because that's the most disabling symptoms, but it accompanies a whole lot of other things. And I've had more than one woman say to me, you know, I feel like I've had flu for 20 years and now I don't.

Sana Qadar: Wow.

Dr Rosie Worsley : I don't think we should let women suffer like that just because we think it might not be it might not be feminist of us or something. I think we have to really take women's complaints seriously. But really look at it from a hard science point of view. And I think one of the problems with a lot of women's health is that there just hasn't been that level of detailed inquiry. And I think the thing is traditionally well, historically, I should say, women's work has not been valued. So if a woman can't go to work, it's not being looked at the same way by medical practitioners or by the system as when men can't go to work. But obviously these things have huge implications then for when these women retire, you know, and they're retiring poor. And then, you know, all of that.

Sana Qadar: While the debate about PMDD's realness continues in the background, treatment options for people with the condition remain a bit scattershot because, like Dr Worsley said a moment ago, there's no way to know whether a person is reacting badly to the changes in oestrogen levels during the menstrual cycle or progesterone levels or both.

Dr Rosie Worsley : So I always start by saying to women, because the current treatments don't target specific pathway, what we're trying to do is give you the best result we can with what we've got available. And because of that, often there's trial and error and often there's an incomplete symptom response.

Sana Qadar: But the first option for patients is to go on antidepressants.

Dr Rosie Worsley : So serotonin reuptake inhibitors, they act very quickly in PMDD. So in the studies, irritability will reduce within 14 hours of starting the dose.

Sana Qadar: Doctor Worsley says they work for about 70% of people. So what's the next option?

Dr Rosie Worsley : Number two is oral contraceptive pills. Essentially what you're doing is turning off ovulation so that you've got stable levels of hormones. So the pill turns off your ovaries and replaces the hormones with what's in the pill. So for some women, that works. For a lot of women, they find they react to the synthetic progesterone in the pill.

Sana Qadar: Okay. Option number three?

Dr Rosie Worsley : Basically oestrogen therapy. So for some women, they're actually reacting to the change in oestrogen through the cycle. So we just put them on some straight oestrogen and see how they go. The problem with that is you can't have oestrogen by itself long term because it can cause uterine cancer. You've got to give it with progesterone. So then you're back to the same problem. What if you react to the progesterone? But for some women we get a solution there.

Sana Qadar: Then if those options aren't working

Dr Rosie Worsley : And there's no other things like other types of antidepressants.

Sana Qadar: Doctor Worsley says she looks at medical menopause.

Dr Rosie Worsley : So medical menopause is using a nasal spray or an implant that just turns off the ovaries, and that's very effective.

Sana Qadar: And how is that different from the pill?

Dr Rosie Worsley : So what the pill is doing is it's turning off the ovaries by using high doses of synthetic hormones. Right. Whereas medical menopause acts on a different part of the pathway. So it basically turns the hormones down to zero.

Sana Qadar: But the problem with medical menopause is then you get menopausal symptoms.

Dr Rosie Worsley : So we tend to give it with add back HRT. So with add back oestrogen.

Sana Qadar: But that is really expensive to do long term. So in her practice, Dr. Worsley says women generally progress to surgery.

Dr Rosie Worsley : Hysterectomy and oophorectomy. Yep.

Sana Qadar: And so how often are patients ending up with a hysterectomy or oophorectomy?

Dr Rosie Worsley : It's not common. It's quite rare, really I think that's in part because it's very hard to access. So, you know, you've got almost no hope of getting that in the public system. So you need private health insurance and then you've got to have gynaecologists who are aware of the condition and happy to treat it. So it's really reserved for very severe cases where we've tried everything else.

Sana Qadar: And why would you need to get rid of like, why would getting rid of the ovaries not be enough? Why would you need to get rid of the uterus as well?

Dr Rosie Worsley : You can just get rid of the ovaries. So that's certainly a smaller procedure. The reason we recommend taking out the uterus as well is that post surgery, you need to have oestrogen to protect your bones because your ovaries are no longer making oestrogen. If you keep your uterus, you're going to need to have progesterone as well. So some people will just continue to have mood side effects from the progesterone.

Sana Qadar: Gosh, this whole thing just sounds like a sort of like a I don't even know how to describe it, like a seesaw, where the second you press one, you know, lever, you're like messing up another. And it's just you're going back and forth trying to, like, you know, it's like whack a mole, actually.

Dr Rosie Worsley : It is. And that tells you that's because we don't have specific treatments, I think. I think when you have a much better understanding of mechanisms and then treatments for those mechanisms is when you get much simpler pathways. But we have no, Well, in Australia it's like it doesn't exist. We have no public clinics for these women. It really takes multidisciplinary treatment. So I can do this because I work with my sister who's a psychiatrist, so we work together, but there's no public clinics where they combine that together, you know, and can treat this long term. It's very hard to access surgical treatment. There's nothing on the PBS for PMDD. So we're sort of living in this scenario where lots of people don't know about it. And then the system is engineered on the assumption that it doesn't actually exist anyway.

Sana Qadar: And in terms of you mentioned, it's only about 5% of women who have PMDD, even though it is a smaller number of women overall. Why do you think it's important to talk about this?

Dr Rosie Worsley : Because it's actually a lot of women. It's a lot of women who are being debilitated a lot of the month.

Sana Qadar: Over the years. Laura ran through a number of treatment options, but nothing worked.

Laura Murphy: So by the time the surgery was on the cards, I honestly thought to myself, like, you have tried everything you can in your power. I just thought I wasn't going to make it. So I thought, you know, I either take this option or I carry on as I'm going. And there was there was no way I could have kept on as I was going. So I don't know if it was really a people was ask about it as a decision. I don't know if it really was a decision. It was a, the last chance really.

Sana Qadar: Yeah. Life or death, I guess.

Laura Murphy: Yeah. So when I was 37, I had a total hysterectomy and both ovaries removed at the age of 37. So I'm now in surgical menopause.

Sana Qadar: And so you have the surgery. How immediately afterwards did you feel a difference?

Laura Murphy: I think people always want to hear it was really instant and miraculous and it really wasn't. It was really boring. Um, there was of no big revelation moment. You know, it's not like cutting out a tumour where it's just gone, you know? I think definitely within a couple of years I was seeing improvements like quality of life is like 95 plus percent better, you know, five years down the line.

Sana Qadar: Wow.

Laura Murphy: But it's, you know, it's a it's a bit of a slow burner, really, I think, because there's so much to get over. You know, all those years of trauma, you know, there's lots to kind of unpack plus, you know, finding out who you are afterwards. It's really strange. I remember about a year and a half after the surgery suddenly being like, Oh, care what I look like? Who knew? I didn't know that was a thing, you know, I just lived in clothes covered in paint for years and sort of just had a couple of months of sort of getting into fashion and being interested in it and thought, what is happening? Bizarre. That faded. But it is just strange. And to actually have consistency, like I remember after surgery thinking, oh my God, you know, do people realise how lucky they are to have four weeks a month to get stuff done? Because when you're in that cycle, you know, you are trying to squeeze everything into those good days. So going out and seeing your friends and working and getting money in and enjoying yourselves and seeing people and doing the shopping, cleaning up, all these things, you're trying to compact them into those good days. And it's a very strange kind of pattern to be stuck in.

Sana Qadar: One of the things that makes me think about is like, So what would you have been like or what you know, what career would you have wanted to pursue if PMDD hadn't derailed so much of your life? Like, if you think back to when you were younger, before any of this started, like, did you have certain ideas of what you wanted to do for work or how you, you know, how your life would be?

Laura Murphy: Actually, um, I went to university. I studied three dimensional design, and I just kind of found my people, like all the creative weirdos. And you could work at home a lot, and you could sit up all night and work if you wanted. Really, really perfect for me. And I actually wanted to go into lighting design that was kind of like the dream back in the day.

Sana Qadar: And so you never actually got to pursue that then I guess.

Laura Murphy: Um, no, I didn't. I went from job to job to job.

Sana Qadar: Laura is 44 years old now, and this many years after surgery, life is totally different. For one thing, she now has a stable job.

Laura Murphy: I'm director of education and awareness at IAMPMD, the International Association for Premenstrual Disorders.

Sana Qadar: And there's so much else that's opened up to her a whole life she never thought she would have.

Laura Murphy: Oh, I can plan holidays and I can pay my mortgage. I bought a house with my partner. I never would have been able to do that. Um, I think things probably other people take for granted. It's ah I never thought I'd have enough to kind of cover the bills each month.

Sana Qadar: And do you feel any sort of, like, grief for the person you could have always been? Or are you beyond that now where you're just like, that's what happened, You know, things are better now. Let's move forward. Like, how do how do you feel about all of that?

Laura Murphy: No. Think I went through that that grief. And now I just kind of think, what a waste. It's just it is just such a waste of years suffering when now I realise that I am capable and perhaps I could have done so much more. But actually, you know, I'm really happy.

Sana Qadar: Good.

Laura Murphy: I'm really happy. You know, I wouldn't say it was worth it because, Jesus, nothing is worth going through that. But where I am now is a good point. You know, I've got a lovely partner, I've got lovely friends, I've just got a third cat. I mean, I'm living the dream, so I never thought I'd just have like quite a nice little simple, consistent life, which is, It's really nice.

Sana Qadar: That is Laura Murphy, director of education and awareness at the International Association for Premenstrual Disorders. She herself lived with PMDD for 17 years before it was diagnosed. You also heard from Dr. Rosie Worsley, an endocrinologist based in Melbourne, who specialises in women's hormones. And so for anyone listening who's thinking, hang on, this might explain, this sounds like some of what I've got, maybe I need to look into this or someone I know. What would you say to them?

Dr Rosie Worsley : I think cycle tracking is is really important. There's also a really good website, iapmd.org, which is set up by North American women with PMDD. And that's really fantastic source of information. And then you need a GP who's going to understand and be on your side. If you haven't got one, then the place to go to find one is the Australian Menopause Society website. So that's menopause.org.au they list GPs who are comfortable treating menopause and often they will have good knowledge of PMDD as well.

Sana Qadar: That's it for All in the Mind this week. Thanks to producer Rose Kerr and sound engineer Roi Huberman. I'm Sana Qadar. Thanks for listening. I'll catch you next time.