93 – PMDD misdiagnosed for 10 Years: Anna's story

0:00Everyone 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 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 and we learn from people's experiences.

0:59I 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 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 PMDD symptoms. I didn't know the term PMDD at the time but what I knew categorically is that my condition, the symptoms I had were related to my menstrual cycle.

1:39Without 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. Even though I said it's obvious 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.

2:18But when you're in those three days, you feel like you're never going to get out of it. But you also dread those days coming, don't you, 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, but I needed more and more till I got to the maximum dose. in 2014 I found 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 although I had to piece it together afterwards and I can remember saying to the inpatient psychiatrist look this is what's happened again and I know it's related to my cycle.

3:12Psychiatrist 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 related to the cycle. And then I was prescribed mood stabilizers as well as antidepressants. So quite heavy duty drugs then? Heavy duty medication yeah and the 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 because I wasn't allowed out.

3:55Even 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, I wasn't strong enough to stand up for myself. So it was only afterwards that I realised, 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, they, in inverted commas, let me go into community care with a crisis team and a community psychiatric nurse.

4:30And how long did you take those drugs for? So I carried on. That was 2014. Time went on. In 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 so 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 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 and 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.

5:49And as well as that, she believes there's a correlation between her condition and her cycle. She must be nuts. 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 recommend a gynaecologist to you who I think will be helpful so she gave me the name of the gynaecologist 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 2021.

6:37Wow 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. I was given the strong impression before that an oestradar patch would be enough for me to help me. So I had the operation. Physically, I recovered very, very well, very, very quickly, but my mental health absolutely plummeted very, very badly.

7:26And I still to this day 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 come on very quickly within a few weeks of having the operation yeah I went down and down and down um and then um I started having blood tests and it was realized 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 um I was there for about a month um 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 a pleasant experience 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.

8:33Did they not join the dots? No. Fortunately, my gynaecologist did speak directly with the psychiatrist and there was some communication. But still, the psychiatrist, we changed my antidepressant, we added drugs in, so on and so forth. And one of the biggest things was sleep. I wasn't sleeping and that made the days so much harder to cope with. They didn't talk about progesterone or testosterone? No, not at all. So they tried with other psychiatric drugs in an environment that probably wasn't very pleasant. Yes. For a month. For a month. I was there for a month. I left there and again, I was very, very unwell.

9:17In fact, I would say during that admission, I was the closest to psychotic I've ever been. I was severely dissociated, severely dissociated. you know, memory lapse, 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 realised 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. 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 was still very unwell saw my gynecologist and we decided to go for implants had a estrogen implant and it was like with with the blood tests 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 and was in a coma for three days and then admitted to a psychiatric hospital for two months this time.

10:52It 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. 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 ward? There was... I can tell you now, there was a cohort of women 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.

11:36Again, I was made to feel completely invalidated, right, basically. Even though you'd had a diagnosis by this time? Even though at this point I got the diagnosis. And on the letter, they would write PMDD diagnosed by a private gynaecologist 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. Yes, yeah. I still feel like that now, like the NHS, they always put diagnosed by a private gynaecologist. 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.

12:15So 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? Yep. Sleeping tablets. Two antidepressants. Okay. And that still wasn't treating the underlying cause, of course, was it? No. and I'd say it took between 9 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 and then had testosterone implants as well. So how did you get, was that from the same gynaecologist? Okay, so she listened to you.

13:00She listened to me and she knew about implants because she trained back in the 80s when they were... a lot more common exactly they were much more routinely used so despite having had a hysterectomy you were still given progesterone yes when i asked for it yes yeah and and did you notice a difference with having all three hormones yes absolutely i 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 um stable however in april when my because I have my implants yearly once I got stabilized having them yearly I do have high doses but I was only 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 um and i agreed with my gynecologist she tried really hard she went to compound pharmacies to try to get a testosterone implant made for me but couldn't get anyone to do it um so before i i tried is it testosterone Tostran?

14:23Tostran, yeah. 2%. Yeah. I tried that before because there was a couple of years before when there was a shortage 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 absorbing it. This time I was prescribed the Tester gel. And luckily enough, I've started to absorb some of it. So I'm feeling well again and much relieved. Yes. And because testosterone, in my past clinical experience, makes the biggest difference actually to mental health. And I didn't realize it. And, you know, I feel embarrassed to say 10 years ago I didn't know women even produced testosterone.

15:04But we see a lot of people who've had severe psychiatric illnesses in the past, which weren't 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.

15:45Many of the topics we discuss on this podcast are explored 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. I find it quite weird to think that we all know that our ovaries make oestrogen, progesterone, testosterone, testosterone, but other organs in our body make like our brain makes them as well.

16:41So 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 oestrogen instead of oestrogen, progesterone, testosterone 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 going to cure those people because you've still got hormonal changes in your brain right yeah do you see what i mean yeah Yeah, absolutely.

17:25It doesn't quite, like you can't take your brain out. So why decide that your ovaries are the problem? And don't your adrenal glands also produce? And your adrenal glands and other areas of the body too. Your muscles make hormones. 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.

17:57I 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 oestradile, it also makes cortisone and cortisone. So it's a really important hormone. and we've known this for decades since hormones were discovered they realized 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 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 I 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 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 so absolutely but the other thing is and and I've been doing a lot on my sort of social media and and and just talking about language because progesterone is either the hormone we make ourselves or the hormone that you're being prescribed now.

19:21It's the same molecular structure. We're replacing like with like. 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 progesterone receptor. And once it's blocking the receptor, you can't get any normal progesterone in the body.

19:59So 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 hysteroscopy and some fibroids removed. And he recommended to me to have the Mirena coil fitted while I was in theatre. Right. 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. and any well any correlation between hormones and mental health he was very very dismissive um and at that point I hadn't been diagnosed with PMDD yet um but I knew I had it um 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 an 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.

21:24Did you have the coil taken out? As soon as I possibly could I got the coil out. And how quickly did you respond? Within a few weeks it was a 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 it was i was much better without the without the coil it's really interesting there is definitely a cohort of people who really respond adversely to marina and um when i was first taught about marina coils when they came out i was always taught that they don't go into the rest of the body.

22:00They only work in the womb. And in medicine, often, once we get taught something, we don't challenge or think about it. 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, 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 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.

22:42So 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, 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 it's had on you. Oh, that's what happened to me. It was absolutely horrendous. Really, really, really horrendous. And did the psychiatrist believe that it could be related to the Mirena coil?

23:19No. No. I worked out the other day with my husband that between 2011 and 2021, so in the 10 years period before I got diagnosed with PMDD, I worked it out the other day that I've seen 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, 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, 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.

24:09you've been telling them that they've made you feel like you were making it up yeah I mean you've been completely gaslit haven't you yeah yeah yeah yeah you must feel so angry and sad at the same time don't you I think I've 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 um but now I hope 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.

25:05I 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. 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 let you say only in inverted commas three days a month but she said I mean I was just dreading every month those days coming 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 for us in so many ways but 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 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 it's quite something isn't it so So you coming on today, sharing your story, is going to anger people, which I think is good.

26:38Because 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 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 they 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 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 so important every day to write a diary not just when you feel awful um that's definitely a big thing i would say that's very helpful um read your book thank you um I think is is is a great 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 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 yeah because it's 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 so thank you so much for coming on i've really enjoyed my means 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 and also means you never miss a future episode.

29:11Thank you.