The Dr Louise Newson Podcast - 93 – PMDD misdiagnosed for 10 Years: Anna's story

Episode Date: August 18, 2026

Content advisory: This episode contains themes of mental health and suicideAnna, a nurse, was sectioned, hospitalised in psychiatric wards for months and overdosed more than once, all while being diag...nosed with everything from treatment-resistant depression to a personality disorder. It took over a decade for anyone to link it to her hormones and to believe her.She tells Dr Louise Newson how her suicidal episodes tracked her menstrual cycle for ten years, yet doctors dismissed her and used her own theory about hormones as evidence she wasn't well. Even after a hysterectomy, a reaction to synthetic progestogen from a Mirena coil, and repeated admissions, it took a private gynaecologist to diagnose PMDD and start her on hormone treatments (HRT).Louise and Anna unpick why psychiatry so often overlooks hormones, the real difference between progesterone and synthetic progestogens and why removing the ovaries doesn't usually remove the problem. Plus three take-home tips for getting hormonal symptoms taken seriously.Let’s connect👉 Track your moodsymptoms with the Balance app: https://bit.ly/4yZty5A👉 More from Dr LouiseNewson: https://linkin.bio/drlouisenewson

Transcript
Discussion (0)
Starting point is 00:00:00 Everyone needs to listen to this podcast about PMDD. With me today is Anna, who gives her own story about how she was an inpatient in a psychiatric hospital more than once with mental health symptoms related to her changing hormone levels. Yet no one thought about hormone treatments. No one wanted to prescribe hormone treatments for her. And when she explained that she thought she had PMDD, they thought that was part of her psychiatric condition. This is unacceptable.
Starting point is 00:00:30 We need to be helping women. We need to be believing them. And we need to be knowing how effective hormone treatments are to improve symptoms of PMDD. So have a listen to this and share it with people. So Anna, thank you so much for coming today. It's a really important topic. I know it's not going to be an easy podcast for some people to listen to, but things need to be said sometimes.
Starting point is 00:00:56 And we learn from people's experiences. I learn from patients and I learn from science, but my wealth of clinical experience gives me the knowledge and confidence that I have. But, you know, we learn from other people's stories. So you're going to tell us your story, which does have a happy ending, thankfully, but it could have been so different
Starting point is 00:01:16 if you hadn't received the right hormonal treatment. So can you just tell me a bit about what's happened? Yeah, of course. Thank you for having me today. So my story really started in 2010 when I started with PMDDD symptoms. I didn't know the term PMDD at the time but what I knew categorically is that my condition
Starting point is 00:01:35 the symptoms I had were related to my menstrual cycle without a doubt three days before my period I felt suicidal utterly depressed fatigue and severe headaches in 2011 I went to the GP for the first time she thought I was nuts and prescribed me antidepressants so what did she say to you then she didn't believe there was a direct correlation between the symptoms I had and my menstrual cycle,
Starting point is 00:02:02 even though I said it's obviously, it's just about, because it was happening for about three days a month. But I was, I'd got two young children, I was working full time, life was busy and hard, and add that three days on. And it's only three days. And some people think, well, it's only three days. But when you're in those three days,
Starting point is 00:02:20 you feel like you're never going to get out of it. But you also dread those days coming, don't know, on the other days. Yeah. So I took the antidepressant as I was prescribed it And what happened over the next three years Is that I ended up being on the maximum dose of fluoxetine Did it help you? I would say initially it helped
Starting point is 00:02:40 But I needed more and more Until I got to the maximum dose In 2014 I saw myself sectioned by the police And admitted to a psychiatric hospital That night I started my period And the next day I felt like a different person I was utterly dissociated, so my memory of it is limited,
Starting point is 00:03:00 although I had to piece it together afterwards. And I can remember saying to the impatient psychiatrist, look, this is what's happened again, and I know it's related to my cycle. Psychiatrist was utterly dismissive again, didn't really believe it, almost used it against me, as if to say this person's not very well mentally, and as well as that they believe there's something wrong with them,
Starting point is 00:03:25 relates to the cycle. And then I was prescribed mood stabilisers as well as antidepressants. So quite heavy-duty drugs, then? Heavy-duty medication, yeah. And the first inpatient admission I had, which was terrifying. And as a result of that, I was later diagnosed with PTSD as a result of a psychiatric hospitalisation where I was utterly terrified, became the archetypal psychiatric patient of literally climbing the walls
Starting point is 00:03:53 because I wasn't allowed out. Even though I wasn't sectioned, they wouldn't let me go into the garden, I couldn't get any fresh air. It was very, very difficult. Why wouldn't they let you go outside? I wasn't sectioned, and again, at the time I was so unwell,
Starting point is 00:04:07 I wasn't strong enough to stand up for myself. So it was only afterwards that I realized, hang on a minute, I was there voluntary, I'd gone involuntary, I wasn't sectioned, and they should have let me out. How long were you there for? I was only there for about eight days in the end, in inverted comments.
Starting point is 00:04:23 let me go into community care with a crisis team and a community psychiatric nurse. And how long did you take those drugs for? So I carried on, that was 2014, time went on, 2015, I got diagnosed with emotionally unstable personality disorder under a psychiatrist, under a community mental health team, carried on, was changed antidepressants many times. I ended up with so many diagnosis mentioned, severe depression, treatment resistant depression, chronic depression, anxiety generalised anxiety disorder, social anxiety, health anxiety. The list went on. Yeah, and that carried on.
Starting point is 00:05:10 So I carried on under care. I had difficulties at work and left a job, moved back to where I was living previously, where I had family around and started working again. and again carried on for a while until things came crashing down again and then in 2021 by which point I knew the terminology PMDD I'd done research but I'd stopped mentioning it because they were using it against me exactly using it as saying this woman's not very well mentally and as well as that she believes there's a correlation between her condition and her cycle. She must be nuts.
Starting point is 00:05:55 So at some point during the 10 years between 2011 and 2021, I'd stopped mentioning it. But in 2021, I had a psychologist on the NHS that was having psychology. And one day my psychologist said to me, have you ever thought, Anna, that you might have PMDD? And I said, yes, I've thought it for the last 10 plus years, but I've been dismissed. And she said to me, well, I can really. recommend a gynecologist to you who I think will be helpful. So she gave me the name of the gynecologist and I went to see her and I'd got, I took six months of diary entries with me and I was diagnosed with PMDD for the first time at the end of
Starting point is 00:06:36 2021. Well, and how did that make you feel? Validated, but curious as to what the 10 years could have been like if I'd got the right diagnosis at the right time. so curious validated still wondering what the future would hold and i followed her recommendation which was to go on the monthly injections to stop the shut down the ovaries working and then at the beginning of 2022 i had a full hysterectomy with my ovaries taken as well um i was given the strong impression before that an eustodal patch would be enough for me to help me so i was given
Starting point is 00:07:18 I had the operation. Physically I recovered very, very well, very, very quickly, but my mental health absolutely plummeted very, very badly. And I still, to this state, don't know how to explain the anxiety I had with being postmenopausal, in surgical menopause. I've had anxiety since I was a teenager. This anxiety was something else. I don't even have the words to explain it. Does it come on very quickly? Within a few weeks of having the operation, yeah. I went down, and down and down. And then I started having blood tests and it was realised that I wasn't absorbing estrogen. So I tried a couple of patches, tried some gel. At the end of March, I felt so suicidal that I was admitted to a psychiatric hospital again. I was there for about a month.
Starting point is 00:08:13 It was, again, very, very unpleasant experiences. Life-saving, of course, and of course there is a place for psychiatric hospitals, but I can say that it's not a pleasant experience to go through. Did they talk to you about hormones? No, not at all. Nobody... Even though you'd had a hysterectomy, your mental health had worsened a few weeks after.
Starting point is 00:08:33 Did they not join the dots? No. Fortunately, my gynecologist did speak directly with the psychiatrist and there was some communication, but still the psychiatrist, we changed my antidepressant, we added drugs in, someone stays forced and one of the biggest things was sleep
Starting point is 00:08:50 I wasn't sleeping and that made the days so much harder to cope with without any sleep about progesterone or testosterone not at all so they tried with other psychiatric drugs in an environment that probably wasn't very pleasant yes yeah for a month for a month I was there for a month
Starting point is 00:09:11 I left there and again I was very very very and well. In fact, I would say during that admission, I was the closest to psychotic I've ever been. I was severely dissociated. Severely desobeyed. You know, severe memory lapses. I had to get family to fill in bits and pieces for me to piece things together. And I left there still very unwell, given a benzodiazepine to take three times a day, which I realize, as I'm a nurse, that if I carried on, I'd be addicted within a couple of weeks. But that's what they prescribed and they left me on that to go home with.
Starting point is 00:09:52 Immediately my own psychiatrist took me off that. Continued then to change again an antidepressant. By this time, I think I was on about number five or six of antidepressant medication. Came out of there. We're still very unwell. I saw my gynaecologist and we decided to go for implants. had a estrogen implant and it was like with the blood tests
Starting point is 00:10:21 and I know blood tests are only part of it because it's more about how you feel but it was like my body was so deficient that it sucked this implant up so my levels rose and then crashed again and I continued having a terrible time at the beginning of July of 2022 I took an overdose
Starting point is 00:10:42 and was in a coma for three days and then admitted to a psychiatric hospital for two months this time. It was the longest admission I've ever had. I remember asking the consultant psychiatrist on the ward what he knew about PMDD and how often he treated women with PMDD and with hormone deficiencies
Starting point is 00:11:05 and he told me he came across a woman with PMDD about every 10 years. That's not accurate, is it? We know that. Well, I mean... Were there other women in the woods? There was... I can tell you now, there was a cohort of women
Starting point is 00:11:19 between the ages of 45 and 55-ish. You could have done a mini-experiment to see that there was a clientele group in there that didn't need antipsychotics, they needed hormones. He knew nothing about hormones. He knew nothing about PMDD. Again, I was made to feel not validate, completely invalidated, right, basically.
Starting point is 00:11:41 Even though you'd had a diagnosis by this time. Even though at this time I got the diagnosis. And on the letter, they would write PMDD diagnosed by a private gynecologist. As if they didn't quite believe it. As if the NHS didn't fully accept the diagnosis. That is what, in fact, I still feel like that now. I still feel like that now. Like the NHS, they always put diagnosed by a private gynaecologist.
Starting point is 00:12:07 I get it every day running a private clinic. They think that we're just somehow different. We're not real doctors, which is incredibly frustrating. So they gave you more antidepressants despite you being diagnosed a while ago with treatment-resistant depression. Yep. And they gave you antipsychotics or other medication. Yeah. Sleeping tablets.
Starting point is 00:12:28 Two antidepressants. Okay. And that still wasn't treating the underlying cause, of course, was it? No. And I'd say it took between nine and 12 months. to get my body somewhat stabilised on hormones, probably another year plus to really get into a good regime. So I started having then progesterone
Starting point is 00:12:52 and then had testosterone implants as well. How did you get, was that from the same gyne oncologist? Okay, so she listened to you. She listened to me, and she knew about implants because she trained back in the 80s when they were not more common. Exactly. They were much more routinely used. So despite having had a hysterectomy, you were still given progesterone.
Starting point is 00:13:13 Yes, when I asked for it. Yes. Yeah. And did you notice a difference with having all three hormones? Yes, absolutely. I, yeah, felt well with all three hormones. And I've had two, the last couple of years, I would say, where I've been stable. However, in April, when my, because I have my implants yearly, once I got stabilized,
Starting point is 00:13:38 having them yearly, I do have high doses, but I was only having, having them yearly. And I didn't realize until April this year that there's a massive shortage of testosterone implants in the UK, and they're basically unavailable. So I panicked, thought I'm going to spiral, this is going to result in mass deterioration. All these catastrophic thoughts were going through my head. And I agreed with my gynecologist. She tried really hard. She went to compound pharmacies to try to get testosterone implant made
Starting point is 00:14:14 for me but couldn't get anyone to do it. So before I tried is it testosterone? Tuostran? 2%. Yeah. I tried that before because there was a couple of years before when there was a shortage
Starting point is 00:14:29 when she couldn't get it for about four months and I tried that for four months and my levels decreased. So I wasn't absolutely absorbing it. This time I was prescribed the tester gel and luckily enough I've started to absorb absorbing some of it. So I'm feeling well again and much relieved. Yes and because testosterone in my vast clinical experience makes the biggest difference actually to mental health and I didn't realise it and you know I feel embarrassed to say 10 years ago I didn't know women even produced testosterone
Starting point is 00:15:03 own. But we see a lot of people who've had severe psychiatric illnesses in the past, which were actually psychiatric illnesses, they related to their hormones and testosterone does, but it is all about the absorption. And having a range of products is so important because a lot of people, I mean, myself included, the gel just floats off my skin. I might as well not bother. I use the cream and it gets absorbed very well. But it's so important because otherwise, like you had initially with the estrogen, you weren't absorbing enough or you didn't have the right dose. So it's not going to help. I wanted to take a quick pause from our conversation to tell you about my new book, The Power of Hormones. Many of the topics we discuss on this podcast are explored
Starting point is 00:15:49 in much greater depth in my book. I look at how hormones really work in the body, why they've been misunderstood for decades, and how confusion between natural hormones and synthetic hormones, has influenced medical practice and public perception. Most importantly, I explain why understanding hormones is essential for improving both current health and future health. So if you'd like to continue learning beyond the podcast, my book The Power of Hormones is available now and I've included a link to buy in the episode show notes.
Starting point is 00:16:25 I find it quite weird to think that we all know that our ovaries make estrogen, progesterone, testosterone, but other organs in our body make, like our brain makes them as well. So there's two things that I feel very perplexed about. One is that if women have their womb removed with their ovaries, they're told they don't need progesterone. So that feels a bit weird because if they've had their ovaries removed, why are we just prioritizing estrogen instead of estrogen-progesterone, testosterone?
Starting point is 00:17:00 but the other thing is is why, when we know that the hormones are made in the brain as well, we know that people with PMDD, the changing hormone levels can trigger the symptoms, why do people think just removing the ovaries is going to be the treatment and are going to cure those people
Starting point is 00:17:19 because you've still got hormonal changes in your brain? Right, yeah. Do you see what I mean? Yeah, absolutely. It doesn't quite take your brain out. So why decide that your ovaries are the problem? And your adrenal glands also. And your adrenal glands and other areas of the body too, your muscles make hormones.
Starting point is 00:17:36 So it feels almost a bit too simplistic. Absolutely. Yeah, I can see that now. I didn't see it four or five years ago. But no, I can definitely see that now. And also with progesterone, thinking that it's only protective for the lining of the wean and you only need it if you've got a uterus, take the uterus out and you don't need it. Well, surely progesterone is doing more than that in the body.
Starting point is 00:17:57 I mean, logic. I mean, I don't know. I'm not a medic. You don't need to be a medic. Yeah, exactly. But is it not obvious that it's going to be doing more than just protecting the lining of the wound? So we have every single cell in our body responds to progesterone. And progesterone actually makes the other hormones. It makes testosterone. It makes Easterdial. It also makes cortisol and cortisone.
Starting point is 00:18:19 So it's a really important hormone. And we've known this for decades. Since hormones were discovered, they realised progesterone was really important. but somehow it's always thought about for the womb. And I did ask at a conference recently, actually, it was an international conference and I just stood up and asked somebody who had given a talk about surgical menopause
Starting point is 00:18:40 in young women and said, of course, if you have their womb removed, you only need to give them estrogen. So I said, oh, I was just wondering where this has come from and I'm not sure why, because my understanding is that progesterone's in the ovaries too. And she looked at me and she said, that's because that's what the guidelines say.
Starting point is 00:18:55 Next question, please. and she just completely dismissed me. And I thought, hang on, you have to be a bit inquisitive. You have to ask those questions. Absolutely. But the other thing is, and I've been doing a lot on my sort of social media and just talking about language because progesterone is either the hormone we make ourselves or the hormone that you're being prescribed now.
Starting point is 00:19:21 It's the same molecular structure we're replacing light with like. Yeah. But a lot of people, including, doctors and often women also talk about progesterone when it's not progesterone. So they'll talk about the coil that contains progesterone. The progesterone only pill, the progesterone implant. All of these contain synthetic progestogens, which are chemicals that they've made that are similar, but they're different to progesterone. They have a different molecular structure. They have completely different actions in the body. And for many women, they actually block the
Starting point is 00:19:53 progesterone receptor. And once it's blocking the receptor, You can't get any normal progesterating in the body, so people sometimes feel worse. So I don't know if that's ever happened to you, if you've ever had anything synthetic in a body. Yeah, I have in 2020. I was having some abnormal bleeding, saw my GP, ended up seeing a gynecologist, a male gynecologist. And I ended up having a hystroscope and some fibroids removed. And he recommended to me to have the marina coil fitted while I was in theatre. Right.
Starting point is 00:20:26 I spoke to him about my mental health. I spoke to him about PMDD. He was very, very dismissive. What of the PMDD? Well, of all of it. Well, any correlation between hormones and mental health, he was very, very dismissive. And at that point, I hadn't been diagnosed with PMDD yet,
Starting point is 00:20:47 but I knew I had it. And again, it was just another doctor, another medic that was just dismissive. of me again and I didn't know any better so I followed his advice and I had the marina coil fitted in November of 2020 within six weeks I'd taken a overdose completely unexpected to me and everyone around me was in a coma for three days in hospital and then had another psychiatric admission and it was my body's response to synthetic progesterone did you have the coil taken out yes as soon as I possibly could, I got the coil out.
Starting point is 00:21:28 And how quickly did you respond? Within a few weeks. It was slightly tricky because it was COVID times and the psychiatric hospital didn't want to let me out to go to the GP to have the coil out. So it took slightly longer than it should have done. But it got there in the end and I was much better without the coil.
Starting point is 00:21:47 It's really interesting. There is definitely a cohort of people who really respond adversity to Marina. And when I was first taught about, Marina Quills when they came out, I was always taught that they don't go into the rest of the body. They only work in the womb. And in medicine, often, once we get taught something, we don't challenge or think about it. My, I don't know if it's a problem. The way that I work is quite different. And because I've always worked as a part-time doctor and a part-time medical writer,
Starting point is 00:22:16 if you're writing about something, you have to understand it. So I've always sort of challenged things. So when I learned that, I was thinking, well, hang on, we know the world. We know the womb is really vascular. There's lots of blood vessels in the womb. Of course it is, because when people have their periods, there's lots of bleeding. So if you've got something that's in the womb, and we know it only works supposedly on the lining of the womb, well, the lining of the womb has a blood supply that connects to the body. So surely some of it gets out. And for a lot of women, the amount that gets out is very low, and it's not enough to have any negative effect. but there are women, and especially women with PMDD,
Starting point is 00:22:55 who are very sensitive to progesterone changing levels and probably don't have quite enough progesterone in their body, if it's blocked, even with a small amount of a synthetic progesterone, especially in the brain, it can have the effects that's had on you. That's what happened to me. Yeah. It was absolutely horrendous. Really, really, really horrendous.
Starting point is 00:23:15 And did the psychiatrist believe that it could be related to the marina coil? No. No. I worked out the other day with my husband that between 2011 and 2021, so in the 10 years period before I got dynos with PMD, I worked it out the other day that I've seen
Starting point is 00:23:30 over 10 psychiatrists, over 20 GP appointments, and two, well, one gynecologist by then and one later. And nobody, none of those people, I've been under the crisis team multiple times,
Starting point is 00:23:46 inpatient psychiatrists, outpatient psychiatrists, completely dismissed utterly and totally but it feels worse because it's not like no one thought about it because you told them so it's like doubly bad
Starting point is 00:24:02 isn't it because it's not like you didn't know or think there was a hormonal problem and then no one asked the questions you've been telling them but they've made you feel like you were making it up yeah I mean you've been completely gaslit haven't you?
Starting point is 00:24:15 Yeah yeah yeah yeah yeah angry and sad at the same time don't you? I think have perhaps been through that and now I'm more curious. I'm more curious when I think back to think what would have happened if in 2011 when I saw that first GP if I'd got the right diagnosis then, what would my story have been? And I'm curious because I think it would be very different to what it is, what it has been.
Starting point is 00:24:44 but now I hope for the future with all the work that you do I've got a 20 year old daughter and I desperately hope that things are different for her and that's why I'm so grateful that you've come on the podcast because learning from stories and joining the dots is really important and having people to advocate for others I was talking to my daughter the other day my oldest daughter has PMDD and she's 23 and my husband's quite intuitive and one day he just said to me, I'm going to go and see Jess in London.
Starting point is 00:25:16 And I said, well, she's not got a migraine, because we often go down when she has bad migraines. He said, no, if something's not right, I'm going down. And she told us recently she'd counted the number of tablets that she'd got because she wanted to end her life. And it was on a day before her periods. Because she, like, it was only in inverted commas three days a month. But she said, I mean, I was just dreading every month those days coming.
Starting point is 00:25:40 And it was becoming unbearable on top of my migraines. You know, if my husband hadn't been there, obviously things would have been very different for us in so many ways. But what I find so good and bad is that she's on treatment, she's on natural hormones, and the progesterone especially has made the biggest difference for her. So her future is already very different. But she was 20, 20, 21, and that was happening. How many other 20, 21-year-olds don't? have access to safe, natural bioidentical hormones, which are, just to add, safer than any of
Starting point is 00:26:20 the other medications that you've been prescribed over the last however many years. I know. Massively safer. Well, they carry no. Yeah. No side effects. It's quite something, isn't it? So you coming on today, sharing your story is going to anger people, which I think is good, because when people are angry, change is going to happen. And we've known about PMDD for decades. It's been known and recorded since the 1950s that it's related to a hormonal change. So why the psychiatrists think that it can't be a hormonal condition, beggars belief. So there's so much more that we need to do, but people are talking and learning and that's really important. So before I end, just three to take home tips. So if someone's
Starting point is 00:27:08 listening and either they've got PMDD, their daughter, their friend, their work colleagues got it. They might not have had the extreme story you, but you've had, but they might have been given some antidepressants that aren't helping. What things do you think they could do to advocate for safe natural hormones treatments
Starting point is 00:27:29 to be given to them? I think one massive thing is to keep a diary. Yeah. A really detailed diary, even on the days when you're feeling well. Yes, that's very important. So every day to write a diary. not just when you feel awful.
Starting point is 00:27:45 That's definitely a big thing, I would say, that's very helpful. Read your book. Thank you. I think it would be a great thing to do to educate yourself as much as you possibly, possibly can. And then try and get family and friends on board to help you advocate for yourself. So you don't do what I did, which is where I stopped advocating for myself because I'd kind of given up. So I didn't see a point in it anymore and people were using it against me. Whereas I think if you can get some family and close friends on board to help advocate for you as well.
Starting point is 00:28:23 Absolutely. And sharing that knowledge with everybody. So share this podcast with as many people as possible, not just for those people who might be suffering with PMDD. Because it affects at least one in 20 women, probably more. So everyone's going to know someone who's probably suffering. without any help, support and hormone treatment. Yeah.
Starting point is 00:28:46 So thank you so much for coming on. I've really enjoyed my means of the wrong word, but it's been great having you here today. Thank you for having me. So just a quick one, it would be really great if you could follow or subscribe to this podcast. This will really help me reach more people with evidence-based information about hormones and their future health.
Starting point is 00:29:08 And also means you never miss a future episode. Thank you.

There aren't comments yet for this episode. Click on any sentence in the transcript to leave a comment.