Full transcript: 'It’s like PMS but a hundred times worse…' - 8 March 2018

This is a full transcript of the 8 March 2018 "It's like PMS but a hundred times worse..." podcast, as presented by Natasha Lipman.

NATASHA - Just so you're aware we do tackle some pretty difficult topics during this podcast, including suicidal feelings.

Hello and welcome to BBC Ouch. I'm Natasha Lipman. Whether you're able to easily ride out the crimson wave or you await your monthly visit from Auntie Flo with dread, it's probably about time we set the euphemisms aside and just have some real talk about periods.

Most of us have heard of PMS and symptoms like headaches, bloating or moodiness that can accompany a monthly period, but for some people, like Lucie Jenkins and myself, who suffer from PMDD, the whole slave to our hormones thing takes on a completely new meaning, and every month we suffer from severe life-altering symptoms.

Premenstrual dysphoric disorder, or PMDD, is a severe form of PMS. But a common thread throughout the stories you hear from sufferers is that it makes them feel like a completely different person. I started by asking Lucie how this whole thing started with her.

LUCIE - I was about 13 when my symptoms started, which coincided with the start of my periods, so quite young really. The symptoms were kind of depression, mood swings. I started getting migraines, I started getting panic attacks. My personality changed really. I went from being quite a happy chilled out child to becoming a super moody teen, which I know happens a lot, but it was just quite bad and quite sudden.

NATASHA - And what was the impact of that? You had to leave school?

LUCIE - I did yeah. So, things progressed and got worse. I was seeing a psychologist weekly. I was started on some antidepressants when I was about 13 when all this started. And when I was about 14 they thought that I might benefit from being admitted to a local child and adolescent mental health in-patient unit for a little while, because things just didn't seem to get better. And to be honest a lot of it is a blur. I just know I just wasn't well and everybody around me could see that as well.

NATASHA - And what was it like when you were at the psychiatric school?

LUCIE - Yeah, it was okay. I think it was helpful. After that I never really went back to school. I did try and go back to school but every attempt that I made ended up quite disastrous.

NATASHA - What happened when you tried to go back?

LUCIE - I just couldn't cope with it at all. I did leave the in-patient unit for a while and go back to school, and it was only a few months before I was admitted again. And I kind of was in and out then until I was 16. I never got back to school and I didn't manage to take my GCSEs.

NATASHA - And how did your friends react to this?

LUCIE - I remember being at school and just being in floods of tears and people didn't really know what to do, what to say. And I must say when I went into the unit I did lose touch with all of my friends from school really. I did make some brilliant friends at the unit who I am still friends with now.

NATASHA - And then things changed when you got pregnant?

LUCIE - Yes. I got pregnant at 16, and within a few months of being pregnant my symptoms just seemed to disappear. I was just really, really well. I was happy. I felt mentally really, really well, which was a surprise really.

NATASHA - And then after that did the symptoms come back?

LUCIE - So, after I had my son I didn't have a period for a while afterwards and things were all right. Although I didn't notice a pattern at the time, as soon as my periods came back my symptoms started creeping in again.

NATASHA - So, when did that pattern first start to become apparent?

LUCIE - It was after the birth of my daughter. I got pregnant with her at 23 or 24, can't remember, and I was physically very unwell during the pregnancy. I had really severe sickness throughout the whole pregnancy and I spent a lot of time in the hospital on a drip. Mentally I felt really well, and then after she was born I had a great... six months while I was breastfeeding her, I didn't have any periods. And then my periods came back and my symptoms came back much, much worse than before.

NATASHA - In what way did they change?

LUCIE - They got a lot more intense. I got a lot more symptoms as well. And it was actually my husband who noticed that they were kind of cyclical, and I remember him saying to me in the kitchen one day, when he was trying to talk to me about something, and he just said to me, "Oh I should know never to try and ask you anything just before your periods." And that's when something made me think hmm, OK, that's a bit of a strange thing to say. And actually I realised that he was right.

And after I kind of had that link I started tracking my symptoms and realised it was at that point, two weeks before my period, that everything would change and yeah, things were pretty awful.

NATASHA - Do you remember what some of those symptoms were? Do you remember the experience of what it would be like every month before your period would show up?

LUCIE - I would know that things had changed before I even opened my eyes in the morning. I'd lie in bed and I could just feel it. It was just like this weight had been put on me. I did go to the doctors at one point and tell them that I thought I was possessed. That's what it felt like. I seriously thought I was going crazy because I felt like a different person. The mood swings were ridiculous. They were really bad.

The scariest thing for me and the worst symptom really was, what I know now to be depersonalisation, where I would feel like I was completely disconnected from my body, almost like I was in a dream. At points I would find that I didn't recognise the people that were around me. I knew that I should know them but their faces just didn't make any sense to me. At one point when things were really, really bad I could hear my voice as someone else's voice. So when I was talking I didn't recognise my own voice, my own reflection.

NATASHA - That must have been really difficult to cope with on a month-to-month basis?

LUCIE - Yeah, it was. It was awful, with all the other symptoms as well. There's such a difference. People think PMS, PMDD are similar. It's like PMS but 100 times worse. It's just so much more intense.

NATASHA - Up until that moment that your husband mentioned that it could potentially be cyclical, what had the doctors thought was happening?

LUCIE - To be honest they weren't really very helpful. All they really did was just give me more and more antidepressants. Every time I went they would up something or add something. I was on a pretty hefty dose of antidepressants. I used to say to them that I'm not depressed all of the time, and this isn't depression, this is something else that's happening. Honestly I thought I was losing my mind completely.

NATASHA - And did they give you other diagnoses before you got a PMDD one?

LUCIE - I had a diagnosis of post-traumatic stress disorder, OCD, and they did mention bipolar quite a lot and questioned bipolar. But I very strongly didn't feel like that's what it was - because I knew it was happening too fast. I could understand why they thought that, because of the almost two different personalities, but it was, as I say, it would happen every month... so it was happening 12 times a year and it just didn't seem to fit.

NATASHA - So, your husband suggests that this could be cyclical and you start looking into this a bit more and you start tracking your periods. What happened next?

LUCIE - So, I started to track my periods and it became pretty clear what was going on. I would, within hours of bleeding, be fine. Literally I would go from one extreme to the other. I would know that my period was coming, and although I suffered from really, really heavy awful periods, I felt at my best when I was bleeding. I even very carefully planned my wedding day so I would be bleeding because I knew that was the only time that I felt OK.

It was beginning to become up to about 15 days before my period that it would start, and it wouldn't get better until I started bleeding. So, I went to the doctors and told them and I did not get much help at all to be honest. I was referred to the mental health team who, when I told them what was happening, they were very adamant that it was a physical problem, not a kind of a mental health problem. So they said, "We'll support you when you're in a bad way and you're suicidal, but this needs to be dealt with by a gynaecologist." So, I would go back to my doctors with that and they would say, "No, no this is definitely mental health." They would refer me back. And I literally just went back and forth for about a year.

When I was at my worst I couldn't go to the doctors, couldn't even string a sentence together, couldn't hold a conversation. And then when I was well I couldn't even remember what it had been like. The weeks prior to that would just be like a blur. And I would have my husband saying, "You need to go back to the doctors just so they can see what's going on." But I just didn't want to think about it. When I felt well, all I wanted to do was rebuild what I had just destroyed in the previous two weeks. So, it was actually my husband pushing me to keep going. If it wasn't for him doing that then I probably wouldn't be where I am now.

NATASHA - It's amazing that you had that level of support.

LUCIE - Yeah. It was very difficult for him, but he was really good, very supportive.

NATASHA - So after that - you'd kind of gone back and forth between gynaecologists and mental health teams - when were you able to get a diagnosis of PMDD?

LUCIE - I think it was the mental health teams that gave me the diagnosis. I think it was the gynaecologists who kind of officially diagnosed.

NATASHA - And were you able to get some treatment?

LUCIE - When I went to see the gynaecologist I was in a really, really bad way. I was at my worst point. And she basically said to me, "I've got this injection that you can have. It will help. If you have PMDD this will fix you." I didn't even really get much information about what it was, and to be honest even if I had, I probably wouldn't have taken it in. Once she said, "This will fix you," I was sold.

NATASHA - What was the injection?

LUCIE - It was GnRH, it's Decapeptyl it was called - and it basically just puts you into a temporary menopause.

NATASHA - And that worked for quite a while, didn't it?

LUCIE - It was amazing. I've got to say the first two weeks weren't pleasant, and I wasn't warned about that at all. But then suddenly everything changed. I remember looking in my diary and thinking oh, I'm about to hit that time - and I just didn't. I just didn't hit that time. And all my symptoms vanished. It was crazy. I didn't realise how bad I was until all my symptoms disappeared.

I was able within the first two months, I think it was, to come off all the medication that I'd been on since the age of 13, and I was just better.

NATASHA - And you could live your life?

LUCIE - Yeah, it was just something I'd never experienced before really. I didn't realise that was what life was supposed to be like.

NATASHA - And then the injections stopped working?

LUCIE - Yeah. I had a brilliant six months. Yeah, so I went back to the gynaecologist within that time - I was feeling well - and she was like, "I'm not really sure where we're going to go." But she did say to me that removing all of my ovaries would cure this, and this was something I should probably consider because nothing else had worked and it was so severe.

NATASHA - How often were you having the injections and how long were they lasting for?

LUCIE - I was having the injections every four weeks and they were lasting for three weeks. By the time I'd been on the injection quite a while it was only really lasting about two weeks, and my symptoms were coming back.

NATASHA - So, what happened when they started to come back?

LUCIE - I got confused again. Nothing was making any sense. The symptoms were just creeping back bit by bit. It was scary and I started feeling suicidal again. I was so desperate, these injections, I wanted them. I knew they had helped, but suddenly they weren't working and I was trying to get them earlier and earlier every month. I was thinking, oh if I call up and just say I'm going to be away they'll give them to me a few days earlier. It was really like being addicted to these injections really.

NATASHA - And what did your gynaecologist offer you after that?

LUCIE - When I spoke to my gynaecologist and told them that the injections were wearing off, I was met with the response really of "That's not possible, they don't wear off. That doesn't happen. That's not a thing that happens. Basically we don't really know what to do with you. I want you to come off the injections and try and go on the pill again." And I was thinking couldn't do that. I spoke to her on the phone and she just said, "I think you need to get a second opinion."

NATASHA - But the second opinion helped?

LUCIE - I found a really good GP in my practice who was really lovely and really understanding and asked if she would refer me to a specialist in London that I had read about that takes NHS patients. And she said yes, which was brilliant.

NATASHA - So, after going through this whole process of misdiagnoses - and treatment that worked and then didn't work - the last thing on the table for you as an option was a hysterectomy?

LUCIE - It was. Well, when I went up to London for my appointment I told them that this injection wasn't working. The lady that I saw said, "Oh that happens to people when they've been on it a long time." And her saying that was like the biggest relief to me.

NATASHA - Validation.

LUCIE - Exactly. That's exactly what it was. So, she offered me the three-monthly injection, which was the same drug but it lasts longer, and she said she would give the three-monthly jab every 10 weeks. So it would miss out that time when your hormones are trying to kick back in and your ovaries are producing, trying to start working again. So, I said, "Yeah, great, brilliant." And it worked brilliantly.

That's when I kind of realised that there wasn't really any going back from where I was now. Before I started the injection I was 100% certain that I wanted another child. But once I'd seen what life was like on the other side of things, I just knew that I couldn't go back. I couldn't go back to that.

NATASHA - Was your husband supportive of your decision to have a hysterectomy?

LUCIE - Yeah. We talked and talked and talked and talked about it. He was worried that I would regret it one day. I was worried about that too, but going back didn't feel like an option. I wrote down a list of all my symptoms. I got a list of 42 symptoms, awful things that were happening. And looking back over that list there was just no way I could survive that again.

NATASHA - How old were you when you had the hysterectomy?

LUCIE - I was 28.

NATASHA - So, you were 28, you had the hysterectomy. What happened?

LUCIE - I had the hysterectomy and yeah, basically life changed massively. It was that normality that I had experienced but without the worry that the injection was going to stop working. Because I knew at some point the three-monthly would do the same as the other one - and it would stop working. And I've done more in the year since my hysterectomy than I had in the 10 years prior to that.

NATASHA - And all your symptoms disappeared after having the hysterectomy?

LUCIE - Everything. Everything was gone. Even things that I didn't know were symptoms that I thought were just me, they just went. Obviously going through the menopause at a young age and all the things that come with it, but to me the menopause was far easier than the alternative. I get hot flushes and all that kind of thing. I don't suffer badly with it. Nothing... nothing like I was suffering before.

NATASHA - Do you feel sad or bitter about how long it took for you to get a diagnosis?

LUCIE - No I don't because I got there in the end. I just feel lucky that it was something that could be cured and that I did get to see the best people in the end. I know that when I was younger the symptoms were all because of PMDD. I have no doubts about that whatsoever. But it just wasn't recognised then, not like it is now. I wish that I'd been taken a bit more seriously by the doctors - by everybody who I saw really, because it was just shrugged off. It was "Oh no, everybody gets PMS, everybody feels like that sometimes."

NATASHA - What do you wish you'd known? What would you tell yourself when you were younger with what you know now?

LUCIE - I would say to myself to be persistent, keep going, keep trying. I knew something was wrong, and I was right to be honest. Just seek out the support. There is so much support out there now. There are the Facebook groups, which are brilliant. There are guidelines and all sorts. I would just tell myself to just keep pushing. Just be persistent I think.

NATASHA - A huge thank you to Lucie for taking the time to speak with us today. I know from personal experience just how difficult suffering with something like PMDD can be, and how our symptoms are often diminished or ignored or misdiagnosed.

I think it's so important for patients to advocate for themselves. But the sad thing is they shouldn't have to. That's something that we all need to work on to become more aware of different conditions and the ways that they can manifest.

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