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...