Finding Help for Women with PMDD and PME with Laura Murphy

EPISODE 24

In this episode, I am joined by Laura Murphy, who is a Director of Education and Awareness at IAPMD - International Association for Premenstrual Disorders.

Laura has been kind enough to share her story of struggling with PMDD for 17 years until she was diagnosed. She has been through dark times, like many of you may be experiencing even now, but her story is one of positivity, support and a newfound passion to help other women.

We touch more on PMDD, PME (Premenstrual Exacerbation) and PMS and how they affect lives in different ways.

IAPMD is a great resource for women going through PMDD - a resource that has helped me a lot through my journey. I knew I wanted to share this with as many women as I can, so I invited Laura on the show. IAPMD was founded in 2013 as the National Association for Premenstrual Dysphoric Disorder by Amanda LaFleur and Sandi MacDonald.

Their mission is to inspire hope and end suffering for those affected by premenstrual disorders through peer support, education, research and advocacy. They have programs that you can be a part of, as well as many support groups and other amazing resources.

Check them out at iapmd.org

EPISODE TRANSCRIPT


Doryn Wallach:

Welcome to It's Not A Crisis. I am your host Doryn Wallach. I'm an entrepreneur, a mother of two, a wife and a 40 something, trying to figure out what is happening in this decade. Why is no one talking about it? I created this podcast to help women in their late thirties and forties to figure out what is going on in our mind, body, soul, and life. We may laugh. We may cry. We may get frustrated, but most importantly, my goal is to make this next chapter of life positive. I'm also full of my own questions. And I'm here to go on this journey with you. So let's do it together.

Hey everyone. Thank you for joining me today. I am always grateful that people are out there listening to me gab away. So thank you for being here. Today's guest is Laura Murphy, who is the director of education and awareness for IAPMD, which I was so grateful to find that is the international Association for Premenstrual Disorders. She lived for 17 years undiagnosed with PMDD, and is now passionate about raising awareness and standards of care for those with PMD, D, PMDs, I guess there are a couple. Anyway, I had such a huge response when I came out and talked about my PMDD, and then I had my episode with Dr. Cohen and I got even more emails from all of you. And I was kind of blown away by it. To be honest, I felt really alone and I felt alone honestly, until I discovered IAPMD.

And as soon as I have time, I am going to help them raise awareness. That is on my list of things to do, but it's a wonderful, wonderful organization. And Laura has had the experience and now works to advocate for PMDD, for women. So I think you'll find this interview really interesting. I do have to tell you, in the middle of the interview, her husband fell off a roof and he was fine. Totally fine. But there were a few distractions and Laura held it together and we finished the podcast. So if you feel that there's some choppy parts, that may be why, but my wonderful editor usually can put this together. And so you won't even know, but thankfully Laura's husband is okay.

Hi, everyone. Welcome to another episode today. We're talking again about hormones, but I promise you that with each of these episodes, there's a reason that we're doing that. We're touching on different of hormones, and I'm very excited today to welcome Laura Murphy to the show. Welcome Laura.


Laura Murphy:

Hi, thank you for having me.


Doryn Wallach:

I'm so happy that you decided to come on. And I want to let you know that I discovered the IAPMD organization from Facebook groups, a very desperate time. I was looking for support and group support and I started to follow the group and then I followed you guys on Instagram and I was so relieved to learn that there was something being done about PMDD, because I think a lot of people aren't even aware that it's a thing. So, at first I want to just go dive in a little bit and tell me about your own journey with PMDD and what got you involved in this.


Laura Murphy:

Yeah, sure, no problem. So my PMDD, I now know, started when I was around 17 years old. I'm now 41. I took the contraceptive pill for 21 days. And on the 21st day, when you switched to the sugar pills, I just had this almighty drop and was having panic attacks for the first time I was hyperventilating. I went into very deep depression for about six months. And from then on and for the next few years, it was longer periods of depression, panic attacks. I was diagnosed with panic disorder. I knew I got really bad PMS and I knew that something was up, but I thought it was more a personality flaw than anything else, really, in my twenties, it became a bit more pronounced.

I remember my ex partner saying to me it's like different with living with a different person for one week a month and still the penny didn't really drop. I honestly just thought I had bad PMS and I was just a really bad person. I couldn't control this rage. It was kind of happening. And I still didn't quite pin it to the cycle. It's really strange how looking back that it didn't occur to me.


Doryn Wallach:

By the way, you're not alone. Do you know how many women will be like, I'm acting crazy this week and I don't know what's wrong with me. And then I'm like, and I'll say, are you getting your period? And they'll say, Oh yeah. I mean, these are women in their forties who have been getting their periods since they were 12 or 13.


Laura Murphy:

And I think if your period. You know, my periods was all fairly normal, whatever that is. But they came when I took pain painkillers, the actual sort of period was nothing out of the ordinary. I didn't have severe pain or anything it wasn't fun, but it was okay. So they just kind of came and went and I didn't kind of patch it together. It was in my thirties when I had the Miriena coil fitted, it was kind of forced on me really. And for the first couple of years it was kind of, okay. And then I just had an almighty crash and was suicidal actually for about 18 months. I was very poorly. I began to experience anxiety, which I've never had. I've had panic attacks before, but I've never had anxiety. And yeah, I was on nerve numbing medication.

I was waking up every morning shaking and I was going to the doctor and she was saying, no it can't go into your bloodstream. It's very localized. There's no way this can happen. So again, I just thought it was me. I thought I was depressed because I was in my thirties and I'd never really got anywhere. Career-wise and I just happened to live back with my parents because I wasn't very well all the time. And it was only through, I'm going to see a counselor, actually, she's the one that picked up on it. My doctor, I saw her and she said it's just PMS, something everyone has, you just has to learn to live with it.

And it was my counselor and therapist through seeing her that she said I'm seeing you every month and this isn't just PMS. And you know, I went home and I go on Dr. Google and I found out about PMDD and that we call it the light bulb moment. And I began reading about PMDD. And like you say, I joined some Facebook support groups. And through there, it's kind of where this sort of learning journey started reading.


Doryn Wallach:

I've already covered this on other podcasts, but can you give a quick definition of what PMDD really is compared to PMS?


Laura Murphy:

Yes, sure. So PMDD stands for Premenstrual Dysphoric Disorder. It's a hormone based mood disorder, which affects around one in 20 women. And those who are assigned female at birth it's essentially a severe form of PMS, but the two can't really be compared PMDD is life disrupting by definition. It interrupts and interferes with your work home education and relationships. It's different for everybody. People do have different timeframes and the way it affects them. So it only affects people in the luteal phase. So that means from between ovulation until around the time of your period. So some people suffer for the whole two weeks a month. Some people, it might be longer if they have more regular periods or a longer cycle, but there is always a symptom-free patch after your period until you next ovulate, it's a spectrum disorder. So some people have mild symptoms, some people have moderate and some have severe.


Doryn Wallach:

I want to go back to your story too, before we get into talking a little bit about IPMD, which is the organization that you're involved with. Before I get to that, I just wanted to say that I was so glad to hear what your description just now, because I was never able to explain it to friends or family, because I typically start feeling really bad around ovulation, like four days around ovulation and then get maybe a few days off and then PMS starts. And at different stages of my life, it's been worse than that. It's been really a whole month of feeling miserable and having two days where I felt normal. That was before I got a grasp on regulating my cycle awhile ago, after children, it does disrupt your life.

I had moments where I like, literally couldn't go out anywhere, do anything social, or be around people. And that's not me. And sometimes I would push through and then I had to learn what no plans. And I think that I don't think people really got it. And I still think it's something that people are not aware of, or women themselves are not aware of within their own bodies.


Laura Murphy:

And it's so hard to explain, I think probably with so many conditions, unless you live with it and you live through it. It's incredibly difficult to explain to other people I think really bad PMS, doesn't do it justice. There's the whole PMS on steroids that one comes up a lot.


Doryn Wallach:

I'd say crack.


Laura Murphy:

Oh, crack. Yes, someone did say that. That's inappropriate.


Doryn Wallach:

Yeah, that's on crack.


Laura Murphy:

I tend to say for people you have no clue about, and it's not very detailed, accurate, but I say, Oh, it's a bit like bipolar, but with hormones. And then people are a bit like, Oh, okay, it's serious.


Doryn Wallach:

And a lot of women with PMDD get diagnosed with bipolar. I know that I was diagnosed a few times with bipolar and I kept saying to doctors, I don't really fit that description. And I think it was just kind of a blanket. Well, I don't know what's going on with you otherwise.


Laura Murphy:

I think the menstrual cycle just isn't taken into account and we see that a lot, people are either misdiagnosed with PMDD or sorry, misdiagnosed with PMDD when they actually have bipolar. There's people that are misdiagnosed with bipolar when they actually have PMDD. And some people have bipolar disorder and have PME, premenstrual exacerbation, PME is the exacerbation of an existing disorder. And that occurs within the premenstrual phase. So that can be any other, any condition. It can be borderline personality disorder, fibromyalgia, MS, ME, bipolar disorder, absolutely anything skin conditions that can flare in that phase before your period. So we do see people, it could be really hard to unpick whether you have PMDD or PME and bipolar, or you could have both. There's nothing to say you couldn't have both so it's really important to see a qualified psychiatrist in that instance to get a proper differential diagnosis.


Doryn Wallach:

Okay. So let's go back to, you looked up PMDD. What happened then after you discovered that's what you had?


Laura Murphy:

I did lots of reading and I think I also buried my head in the sand a bit. I was still having good tweaks and just trying to ignore it and probably a bit self-destructive still, going out and enjoying myself in the good weeks and probably self-medicating a bit too much in the bad weeks going out and partying. But I think I just liked to read, I was one of those people, I was like, I want to understand it. And I joined a UK specific PMDD group. And like you say, connected with other people, realized that I wasn't a bad person, that this was a real thing that these stories and experiences, it just so aligned with other people looking back the relationship, breakups, the not being able to hold down a job. So being in the work toilets, and I think I saw the doctor again and was sent away with a PMS leaflets, which is really helpful have your evening Primrose Ireland, try and have a nice bath kind of thing, time to yourself, which really just did not cut it.

It just kept getting worse. I was in my mid thirties by that point. And I tracked my cycle I downloaded the tracker information and I tracked my cycle. And then I hit a real low point. At that point in my thirties, I was sort of losing well over a week, every month. And it was getting worse all the time to the point where it just felt like someone had died every month. It was literally like going through a bereavement. It was exhausting. Everything just would tip on its head. And it would just, I don't even know how I think the only way I can describe is if you've ever got that phone call with bad news and your heart drops and your world is just pulled out from under your feet, it would just feel like that. And you knew it wasn't real and it was hormones and it would pass.


Doryn Wallach:

I always explained it as just kind of waiting for like you kind of at the top of the rollercoaster and then going down. And my other description is, it's like crawling out a quick sand every day, it's like you're trying but you keep getting pushed down.


Laura Murphy:

Yeah. The fatigue was a lot. I used to get hypersomnia so sleeping too much. Like I couldn't stay awake for a day. I'd have two or three naps. I literally just couldn't keep my eyes open. It was the kind of, sort of tiredness you can't push you with caffeine. And if you did try that, then the anxiety would ramp up [crosstalk 00:14:36]. You know, your body's kind of like fighting against itself, just utter exhaustion. And I hit a real low point and didn't know how to describe it safely, but almost took my life. I'm very much on the spur of a moment. And it was at that moment, my partner sort of said, "We really got to get you to the doctor." And I went to see my GP and she's all finally lessened. I found the name of a specialist in the UK, Dr. Benet who's very well known internationally, and I got a referral to him.

So he way it works in the UK and three months later sort of sat in front of him. And it was very much, I actually just listened to your previous podcast. When you said you sat in front of the doctor and it was the first time anyone had ever said yeah, this sounds all very on the ticket you just let me talk for about five minutes. And he said this is very textbook PMDD, like tick, tick, tick, tick started in adolescent, worsened as you got older, reacted badly to the progesterone, to the Mirena. I personally didn't do very well on all the contraceptive pills. I did okay on SSRIs for quite a while. I think that held it back a lot in my twenties. I saw him as a he's based in London and through that, then I started on like cycle Suppression using HRT. So I tried that for about a year or so.


Doryn Wallach:

Can you explain what that is?


Laura Murphy:

Yeah. So essentially it's the next step up from taking the pill. You want to suppress your ovulation. So with PMDD, should've mentioned, this is a hormone sensitivity to the natural fluctuations that occur in your luteal phase. So what they're trying to do is flatten out that ovulation so it's just a straight line. You know, you want your hormones to not be up and downing. So if the pill doesn't work, then the next stage in the UK, it's still not quite there rolled out in America yet, but under some providers in the UK, you go to using HRT, so estrogen patches, or gel, and then a form of progesterone add-back usually for about 10 days a month.

So, I tried that at different levels and unfortunately it didn't work for me. It didn't suppress my ovulation. So then I went on to GnRH-a treatment so that's chemical menopause, where you are given injections. In my case, monthly to come put you in a temporary and reversible state of menopause. Unfortunately, that didn't work for me either. I ovulated through nine months worth. I had a very bad reaction to the chemical menopause and was pretty poorly and had to give up work. It was a very, very hard year, very difficult. I was having about three good days a month and sort of 24, 25 bad days of PMDD like symptoms. So in the October of that year, I had the surgery, which is the last line of treatment for PMDD.


Doryn Wallach:

And surgery. You mean hysterectomy?


Laura Murphy:

So the hysterectomy is the important part for the surgery is bilateral oophorectomy so that's ovary removal. So it puts you into surgical menopause, if you don't do well on progesterone, like I didn't, then you have the hysterectomy in addition, but say someone did well on progesterone HLT, then they would, I say only it's not minor by any means, but they would only have ovary removal. So you can't be on, it's called unopposed estrogen. So you couldn't just have estrogen if you have a uterus, because it can be really dangerous. It can lead to hyperplasia like the buildup of the uterine cells, which can then lead to cancer. So if like me, you don't do well on the progesterone. And it brings back PMDD like symptoms. Obviously it would be pointless having the surgery.


Doryn Wallach:

Right.


Laura Murphy:

And it could take your ovaries and then put back the symptom manually I had, it's called a total abdominal hysterectomy with bilateral salpingo oophorectomy. So that's your ovaries removed your tubes, your uterus and my cervix as well. So again, I didn't need progesterone treatment. So pretty major, pretty invasive.


Doryn Wallach:

Yeah. By the way, I've called my doctor and said, "Take it all out, take it out. I can't do this every month." So I understand if you get to that level I'm not at that level yet. When you had the surgery, did you find relief? Was this the answer?


Laura Murphy:

The actual surgery is only about 50% of the treatment as it were for PMDD, the others of 50% is on the other side. So it's time patients and it's about getting a steady dose of hormones at the right level to protect you and protect your bones and your lungs and your heart health. So for me, it's definitely been a bumpy journey. So I'm three years post-op now I have no regrets. It was the only thing left for me. And my tank was empty. Like I had nothing left to give.

And by the time I had the surgery at 37, I was losing half a month every month and was getting so low that I couldn't get out of bed and I couldn't work. I couldn't function. And it's certainly not something to be taken lightly. I want to stress that. It really is when for me, it was like, there's, there's nothing else left. And I have no energy left to keep fighting this. So if it works then awesome, I can't keep going on the way I'm going. That was kind of the decision made for me. I mean, it's a big decision. It puts you in surgical menopause, which has to be managed long-term as well, and much the same as PMDD. It can be really hard getting the right help for that.


Doryn Wallach:

But you feel better than you did?


Laura Murphy:

Goodness, yes.


Doryn Wallach:

Good.


Laura Murphy:

Yes. It's still...


Doryn Wallach:

So happy to hear that.


Laura Murphy:

It's still has moments. I still cycle a little bit. They don't quite understand why that happens. I still cycle to my exact dates and which isn't uncommon.


Doryn Wallach:

And when you say you cycle, meaning that you feel symptoms even though you have...


Laura Murphy:

Yeah, there's no ovaries sending the signals. It's more like PMS now. Like I get hungry and I have cravings and there might be a couple of days a month where I get really tired and I just have to really sleep, anxiety and sort of irritability, but nothing like PMDD, like nothing.


Doryn Wallach:

I'm so happy to hear that.


Laura Murphy:

Yeah. It's a better place to be for sure.


Doryn Wallach:

I just told Laura that I never ever want to say that something's working until it's been months because I feel like I'll jinx it. So, and I've done this before, but I just started taking the pill continuously and it's the first month I haven't had a period and I like, actually, it should be day five today. And I woke up with energy. And so I'm like, maybe this is going to be the answer, but I need to get through that three months first to see if I'm really, if it's helping, but it must be such a relief for you, even though you still have some of it. But just to know that it was something that you could tackle and good for you for advocating for yourself and for going through that, because that is not easy stuff to go through either with the PMD or post.


Laura Murphy:

But it's really strange. I think it's probably one of the only conditions in, like you were saying about all the peer support groups on Facebook. I don't know many conditions but when you get approved for the surgery, everyone's like, congratulations, that's amazing. You know, it's at the time I remember being really annoyed when people are like congratulating me and I was like, this is like...


Doryn Wallach:

This is hard. This isn't something that's taken lightly.


Laura Murphy:

No, but it's like, it's an end in sight I think. That's what people want to cheer. And I totally appreciate that, but it's not a good place to be having to choose between the fertility and your life, your mental health, your wellbeing. And thankfully for me, already at 37, I've made the decision. I didn't want to have children. It was a lot easier. But for other people who are making the choice between being well and losing fertility, I mean, that's huge and we need better options and more research so that people don't have to keep going through this. You know, it was my journey and bought a space in time where that was the only option left, but we're hoping in the future that people don't have to go through that because it is invasive and is dangerous and surgical metaphors is not a fun run either. So yeah. Hoping improvements are to come.


Doryn Wallach:

Oh, good. Okay. I do want to get into that and in a minute, so it's interesting. I know that you didn't have kids. And I have two kids and I've mentioned this on a solo podcast, but when I got pregnant with my daughter, after three months of pregnancy, I had never felt that good in my entire life I had, my anxiety was low. Things rolled off my shoulders, I was sleeping better than I ever had. I was constantly struggling with constipation and that was no longer a problem. I was calm. I had no irritability and I was naive because I was like, "Oh, pregnancy is great." This is great. I feel terrific. I didn't...


Laura Murphy:

Yeah, this pregnancy has fixed me.


Doryn Wallach:

It was more like, I wasn't thinking, why has this pregnancy fixed me? I just felt like, "Oh, maybe I was so euphoric about having a child." And very shortly after I gave birth, somebody had come in to talk to me about postpartum depression. And I looked at them and said, "Oh, I don't need that information, I'm fine." But four days later, when my milk came in, my world shattered and I struggled for two years with that. So when I got pregnant again with my son, I went through the same experience, again, feeling wonderful. And at that point, I said to my doctors, I'm not breastfeeding when I'm done. I'm taking the pill in the hospital and I'm going to take it continuously.

And I'm not going to like, I now know that I benefit from these hormones. So I need to mimic those in my body. And that actually did help me a lot. I was much better off after my son and my husband at one point, joked that he's like, "Well, maybe you should be a surrogate." And I was like, "That's not funny." Like, [crosstalk 00:25:23] I understand his logic too. But at that time in my life, I did not think it was funny, but...


Laura Murphy:

We hear that a lot. We do hear that a lot that people and I mean, not everyone with PMDD has the same experience I have to say, but a lot of people do have the experience. You know, the pregnancy is a really happy, calm time because there's no fluctuations. Yeah. Your hormones are all high, there's no monthly ups and downs and surges everything is just riding high. And then once cycle starts back again, like you say, once you have your ovulation or hormone drop, then that's when the issue occurs.


Doryn Wallach:

So tell me a little bit about the organization that you work for. You're the director of education and awareness for IAPMD. What is IAPMD? What does that stand for and what got you involved in this?


Laura Murphy:

Okay. So we are the International Association for Premenstrual Disorders. So that covers both PMDD and PME, which we talked about earlier, premenstrual exacerbation. We focus on the exacerbation of psychiatric disorders. So borderline personality disorder and schizophrenia, anxiety, bipolar, anything that's under the sort of the psychiatric umbrella. It started back in 2013 when two people met each other, Amanda Leffler and Sandy McDonalds met each other, both talking to each other in [CloSYS 00:26:56]. One in Colorado and one in Canada up in Halifax, met on a peer support group, got talking. We're just both very passionate about creating something that needed to exist for them as patients at the time, because there wasn't really anything representing them. So they formed the national association of premenstrual dysphoric disorder, so NAPMDD, and that then evolved over the last few years.

And in 2018, we went international. So we're now the international association for pretty much total disorders. I became involved about three and a half years ago. I had started a patient awareness campaign called Vicious Cycle. And through that, I then started chatting and getting involved with NAPMDD at the time I joined their board of directors, and then I started volunteering. So I used to run the social media, and then I started running the social media. Then I helped with some other projects going on predictable donating and then director of education and awareness. So yeah, we offer peer support, which is invaluable to people with PMDD and speaking to other people that understand it. I don't think anyone can understand it unless you've been through it. So we have trained peer support providers that can talk people through that journey, give them the tools they need, resources, information, and a friendly, essentially our website is a really good hub of information to help get yourself diagnosed, to learn more about PMDD.

Which is building out sections for younger people with PMDD, because you know, that journey is a bit different to being older relationships and dating and education, et cetera. So we're very much trying to work with providers and the scientific community to push for more research or push for better patient outcomes. So we're working on some advocacy at the moment and we have some really exciting news, which I cannot tell you yet because we haven't released it. But we've got some massive work coming on about patient outcomes.


Doryn Wallach:

Do you feel that there's been a movement in treatment for this? That you feel, whether it's research or from what you have discovered through clients or the women that come to you guys. Are we going in a direction where there's something maybe less drastic than surgery?


Laura Murphy:

They are working on I think the first part of call, they are trying to locate the biomarkers. So PMDD could be diagnosed by a blood test, which would be amazing. That's not going to happen in the really near future, but people are working on it. There's also some work going on about brain scans to be able to see what is actually happening in the brain when that switch occurs. So when that feeling less, I'm sure you the feeling well, but when you come on your period or within a few days of coming on your period and that mood just kind of lifts it just that you kind of feel yourself going back to normal, like the Color returning, they're trying to sort of figure out what's actually happening in the brain when that happens.

And Sweden just did a massive piece of work on a drug called sepranolone, which targets exact area in the brain, the exact mechanism that causes PMDD so that just went through second stage of clinical trials. And in April they announced that they weren't continuing with the developments due to a high placebo rate in the second phase. However, I think it is a really, really good step in the right direction. I think better times are definitely coming and you have to remember PMDD has probably existed forever.


Doryn Wallach:

Oh yeah. I mean, obviously, and you know it's so funny. I say this all the time, I'm like men had erectile dysfunction and all of a sudden there were pills and treatments that I would imagine multi-billion dollar industry, women are just kind of looked at like, you're crazy. I feel so empowered to learn that there are women that are... What you guys are doing and, and fighting for this for other women, because it's just and I talked about on my podcast with Dr. Cohen, I said, I really feel that medical providers are in the dark on this they just don't understand. Do you do anything to help educate medical providers?


Laura Murphy:

We do. So we're just working on patient outreach programs at the moment, very exciting. And that will tie into the big announcement that we have coming. But yeah, we're definitely working on, I think as our clinical advisory board lead has said we are doing a really great job of making like thousands of patient experts, but that's no good if they're going to providers and getting turned away if they're not getting the right care. So, I mean, that happens so much. And I think PMDD it's existed for years only became an official diagnosis in 2013. So it's still relatively new. The process needs accelerating, which is what we're working towards because you know, it will happen, but we want it to happen quicker.


Doryn Wallach:

Right. I was so happy when it became a diagnosis.


Laura Murphy:

It was controversial at the time. But I think it does. And it's now since I think it was this year as well, maybe I think it may be last year added to the ICD-11. So it's now an international diagnosis.


Doryn Wallach:

Yes. Why was it controversial?


Laura Murphy:

Because it's a psychiatric book of diagnosis and there's lots of people and there's papers on it, people felt that it was more...


Doryn Wallach:

Physical.


Laura Murphy:

Pathologizing. Pathologizing is such a bad experience. So you're putting women with PMS in a psychiatric book they're doing, it's just PMDD, isn't real. It's just women being hormonal some women can't cope with PMS it's, there are some interesting papers out there about it.


Doryn Wallach:

If you look at your message boards, you see that there are hundreds or thousands of women who are not just complaining about PMS and the support on there is so wonderful. I mean, I've seen women on there get to a point where they're like, I feel suicidal and that's obviously when they're reaching out to a message board, that can be scary, but that group has been so supportive. And this isn't a bunch of women coming on here to just bitch and moan for no reason I am on the board. Sometimes I get a little, like when I'm having a good week, I'm like, I don't want to see everybody's comments because I just I'm feeling good.


Laura Murphy:

Of course. Who wants to be reminded in their good time? You know, that's perfectly understandable and the supports are there. So IAPMD runs seven Facebook support groups, and we also have one that's non social media. So for people who don't do Facebook, don't want to do social media called Inspire, which you can find on our website under the support tab. It's more like an old school forum. So you can go in, you can interact anonymously. You can ask questions and find out information and connect with people without being on Facebook and it being all social media that, but I think, yeah, it's perfectly understandable that you don't want to remind you and your good weeks and I think there's also this kind of really, I don't know, people compare it to childbirth like in the good weeks you kind of think, would a condom been that bad. Can't get that bad. It can't. And then you hit the bad weeks again. And you're like, Oh my God. Yes, yes. It can. You know, and things get really, really dark again.


Doryn Wallach:

You know what I couldn't find it, which I think there should be is online face-to-face support groups or in person when we can go back to that. But like where you're actually in a group talking.


Laura Murphy:

We're working on it, keep your eyes pale. So we're just changing the way that we run our peer support. We're changing over the programs, sorry, we're changing over the tech platforms at the moment. So we are looking at different ways of rolling out peer support so that people can use it in different ways to suit them because there are people that are just going to want to dip in and out in an anonymous basis. There are people that would prefer to sit in a Zoom call and chat with other people perhaps


Doryn Wallach:

I looked many times. It would've been great to go to a place where I was understood by other women. And it was something that we could talk about privately and in a safe environment, but it doesn't exist in New York that just very telling of hopefully it will, at some point.


Laura Murphy:

I think it will totally at some point, and it's something I've seen many people try and start. However, with the nature of PMDD, trying to run something regularly people are either going to try and run it in the good weeks and they don't want to be reminded of it. So it falls apart pretty quickly, or they try and rearrange it and people don't want to go in there with good weeks or perhaps it's not the best place for them when they're really in that bad weeks.


Doryn Wallach:

Right. It's so true. It's almost like you need AA meetings when you can just pop in when you're having a hard time.


Laura Murphy:

Yeah. But we do have our peer support services, so they can do video calls. So you...


Doryn Wallach:

Tell me more about that. So who are the people speaking to the women in the peer support?


Laura Murphy:

The program is run or it's the brain child. And it's the love of her life. It's a Sandy McDonald, who's our chief executive. So she's a professional peer support expert. And so she started up this program. I think she started some of the bigger peer support groups on Facebook back in the day, back in 2013 and in 2017, we started up the peer support service, which anyone anywhere can contact there's trained providers. So I think we have about 70 active trained providers at the moment. So they are people that live with PMDD themselves, or have previously lived with PMDD who can just connect with you, hold your hand through it, pass you resources. You can ask them questions. You know, we've got a whole database of information to pass on. Lots of questions, clarify things and just be that kind of safe space.

It's not crisis support. It is you know, meeting each other on an equal level to discuss any concerns or very common questions and very common problems. You know, I can't find anyone to help treat this. So we have searchable provide a map on our website, which we're always trying to grow. So if anyone has seen someone who is amazing at treating PMDD, please do submit them. We have loads of resources. We have symptom trackers, which is currently the only way to get a diagnosis of PMDD by tracking your cycle for at least two months.


Doryn Wallach:

I'm sorry, just to go back to that when you're tracking your cycle and then who do you see? Is it a gynecologist or a psychiatrist?


Laura Murphy:

It entirely depends. I wish there was a straight answer but there's not you might see a general practitioner who has an amazing knowledge of PMDD and you might see a psychiatrist who has never even heard of it. So that's why we're trying to build this provider directory. So for me, I think I was very clear cut and easy PMDD, very on off symptoms, sorry, nothing within the sort of molecular phase. I think it was a pretty straightforward diagnosis. So if perhaps, like we were saying earlier, the confusion around PMDD and bipolar, perhaps if you have concerns, if you're have PMDD or PME or another condition, then you would perhaps need to see an experienced psychiatrist who has an interest in women's health, who can help make a diagnosis.

So me personally, my provider is a gynecologist. It's really weird because it sits in the middle. It sits in the middle of site psychiatry and gynae. A lot of the treatment is cycle suppression, quashing down that ovulation. So we would recommend just getting on the provider directory and finding someone new you've been recommended by another patient.


Doryn Wallach:

Wonderful. Well, I appreciate you coming on and sharing your story. I know that that is not an easy thing to do. I did that for the first time recently, and it was scary, but the more women that do share their stories, the more we're going to learn about this and be able to help. So thank you for coming on the show and thank you for bringing more awareness to this. Please tell the listeners how they can find your organization and the website or Facebook or anything else you want to plug.


Laura Murphy:

Yeah, of course. We're on iapmd.org. We're across all the usual social media, Facebook, Instagram, Twitter, et cetera. So I think PMDD awareness is just so important because so many people, so many patients are unaware of its existence and daily, absolutely daily hear stories about people who thought they were broken, who thought they were weak, who thought it was a personality disorder. In some cases this is backed up, unfortunately by healthcare professionals who should have been fighting fights in their corner. But you know, there's so many people that are missing out on a good quality of life because they don't know it exists and what you know exists and what it's a real thing and it's a biological cause you know, it's not a choice. It is something that happens in the brain. And I think once you know its existence, you can actually start self-advocating, you can start finding out th