Living with PMDD: My Story

Having PMS that makes you feel suicidal or makes you want to run away every month is not ‘just PMS’
Premenstrual dysphoric disorder (PMDD) is a severe and disabling form of premenstrual syndrome affecting 3–8% of menstruating women (that’s A LOT of women!).
Severe psychological symptoms can include mood swings, depression, tiredness, fatigue or lethargy, anxiety, feeling out of control, irritability, aggression, anger, sleep disorder, and food cravings that recur monthly during the luteal phase of the menstrual cycle. Some women also suffer from chronic physical conditions. Research released in January 2017 shows that PMDD is caused by a genetic malfunction. This causes a sensitivity to the fluctuation of sex hormones. It is NOT a hormonal imbalance.
I thought I was weak for feeling suicidal every month
It’s PMS on steroids…
For a long time, I thought it was ‘normal’ to suffer from severe PMS. I thought I was weak for feeling suicidal every month. I would just go to bed for a few days as I could only face sleeping. I’d been to the GP time and time again over the years to get help with panic disorder and depression. Not once did anyone ever suggest that hormones could be the problem. I also had bad reactions to different contraceptive pills over the years.
I remember in my 20’s when I was living with a partner. He told me that it was ‘like living with a different person for one week a month’. I would get chronically depressed and I wouldn’t be able to get out of bed for a few days each month. In the build-up to that, I would have panic attacks and big rages. There was a big knock-on effect. It made it difficult to hold down a job, so I always worked part-time or took on temp work.
In my 30’s this got worse and I had the Mirena coil fitted to help my cycle. This, it turns out, is a big no-no for women with PMDD. Many of us have a bad reaction to Progesterone. In my case, I ended up signed off work for 18 months with crippling anxiety and depression.
I did some research and realised it may be down to the coil. Doctor’s, however, told me this was not possible. They advised that the coil only acts locally and no hormones travel into your system. In my case, this turned out to be total rubbish. The day after I had it removed was the first day in years that I woke up without that buzzing anxiety feeling in my arms.
The ‘lightbulb’ moment
It was only when I got home from another GP appointment I thought to myself ‘this can’t be right’. I acted and Googled ‘Severe PMS’ – up popped information about PMDD. When I identified with the symptoms it was a life-changing moment. I joined a support group on Facebook (UK PMDD Support) and I finally started to piece together everything that had happened over the past 18 years.
Speaking to other sufferers
Joining the support group was invaluable to me. There were SO many women out there who had been through (and are still going through) the same as me. It was a revelation. I learnt about treatment plans and specialists from these supportive women. They also gave reassurance that I wasn’t ‘broken’ or ‘useless’.
The crunch point came when I got so low that I almost walked out in front of a lorry when I was with my boyfriend
Although I had finally found support, unfortunately, my health kept getting worse. I was losing about three days on the descent into PMDD. It knocked me out for a week and then I needed a good few days to recover. The crunch point came when I got so low that I almost walked out in front of a lorry when I was with my boyfriend.
I can only liken it to feeling like I was going through a bereavement every month. It was exhausting. That incident scared me enough to go to my Doctor and tell them (not ask!) that I needed a referral to a specialist. My Doctor approved and I now see the amazing Dr Panay in London. I’m going through chemical menopause whilst on HRT. Fingers crossed that it all goes well and I will be having a full hysterectomy in the future. It’s important to point out that the operation is only the case in the most chronic cases. It’s for women who do not respond to the other treatments in the treatment plan.
Helping others…
I now run the UK PMDD Support group and we have over 900 members. It still shocks me that no medical professional picked up on my reactions to hormones/my cycle earlier on. I still have only met one GP who has even heard of PMDD.
Alongside the support group, I wanted to raise awareness of PMDD. I worked with my lovely friend, Celia Hyland (also a sufferer) to create the “Vicious Cycle: Making PMDD Visible” project. We’re asking sufferers, along with their partners, friends and family to put their thoughts, words and art onto postcards and send them in. It will accumulate into an exhibition which will highlight the effect of PMDD on women’s lives. The exhibition is at the core of the project. There will also be lots of awareness projects running alongside it.
If you have any concerns please do read up on PMDD, talk to your GP and look after yourself.
This blog was written for TOTM by Laura Murphy, PMDD Awareness Promoter. Follow Laura on Twitter to keep up with her story. To find out more about Vicious Cycle: Making PMDD visible project, check out the Twitter page. Further reading about PMS and PMDD can be found either via the National Association for Premenstrual Syndrome website or via Gia Allemand Foundation. Be sure to check out our Q&A with Laura.
*Disclaimer: This blog is based on my personal experience. My comments are based on what I’ve personally gone through and what I have been told. I’m sharing this personal story with the aim to help others in the same situation and to raise awareness. I have no medical experience or qualifications and I don’t pretend to be giving medical advice. If you are concerned about any of your period symptoms you should contact your GP for advice.
For more information on PMDD and other menstrual and reproductive health conditions, visit our health and wellness section.
Lior Student
I live in Tel Aviv and here too it took a long time to understand what it was. I now educate generalist doctors about PMDD. Important: I am epileptic and it turns out that my big seizures are connected to PMDD. If there are women epileptics out there, let your neurologist know about your PMDD or check it out. For me the pill (ongoing 4-5 months straight) + anti depressants + epilepsy pills make it all bearable.
Laura Murphy
Hi Lior
Thanks so much for your reply on my post! I am pleased you found my story useful and am sorry that you too are having to educate Dr’s. I am sooooooooo pleased you have found treatment to find relief! Please check out our project page on facebook! Link below…Laura x
Lisa smith
I thought I’d written this myself….all too familiar but, not s distant memory after having a full hysterectomy 17 months ago. What a wonderful thing you’re going to raise awareness, id live to see the exhibition. It would mean a lot to me now I feel that I might god able to re-visit some of the trauma this horrendous disorder creates.
Good luck for the op, it will give you a brand newlease of life.
You’ll never look back.
Lisa
Laura Murphy
Sorry Lisa! I only just realised there was comments on here! I am SO pleased to hear the op has changed things for you – I really am. I have just been approved for mine and so am looking forward to starting over and having a new lease of life! we would LOVE for you to come to any exhibitions-please follow out FB page to stay up to date with what we’ve got on!
Leisa McEwen
This all sounds so familiar to me. I had my hysterectomy 17 months ago and it completely changed my life. I feel like I’m finally free and able to live my life. There definitely needs to be more awareness with doctors. I was fobbed off with antidepressants for so many years, which really didn’t help but rather just made me numb and sleepwalking through life. Then after I felt I had reached a crisis point and simply couldn’t face one more cycle, I was finally listened to and managed to see a great gynaecologist who put me in a medical menopause and then a few months later I had my op. Now I’m off that hideous rollercoaster and it’s just wonderful!
Laura Murphy
I cannot wait to get off the rollercoaster Leisa I can tell you! I am now all approved for surgery and just waiting ( will be a few months no doubt) but I know it’s coming!
SO pleased to hear you have a new lease of life – I am excited for it – I really am! Please come and support our project over on FB! Link below! x
Dawn
This touched me pmdd has ruled my relationships and health jibs etc for 20 years its a hopeless feeling when u want to run from yourself but can’t thanks for sharing your story
Laura Murphy
Totally hear you there Dawn – are you getting any support now? there’s some great support groups and resources out there. Please do feel free to message me via the project page (link below) and we can have a chat… Laura x
Yvonne Valenza
I live in the US, and I only just learned about PMDD a few months ago when I did a Google search on “aggression and birth control.” I do not have such an extreme case as yours, but ever since my daughter was born and my period returned, I’ve struggled on and off for 2 years with extreme aggression and feeling out of control of my emotions. I couldn’t stop from freaking out at the smallest things and then a few days later I would be fine. I felt like I was going crazy. When I found an article on PMDD after my last birth control placebo cycle, which included suicidal ideation that immediately stopped when I was back the regular pill, I knew that had to be what was going on and called up my OBGYN. After two cycles of continuous birth control and no placebo weeks, I have felt like myself again. Today was the official diagnosis from my doctor and it feels so freeing to have an answer!
Laura
Fab! I’m so pleased you found something that works for you! Yaaaaaaaaayyyyy! Long may it continue! ❤
Its amazing how many people are finding out about PMDD themselves and not drs… I was the same. My GP still doesn’t acknowledge it!
Melissa
Thank you Laura for sharing your personal experience and the research that you’ve done on this evil PMDD. I too have suffered for many years I am now 44 and have 4 children. I am taking antidepressants to help with the severe symptoms of depression and irritatabilty associated with this terrible chronic disorder they help a little but not enough for me to function after ovulation every month. I have had a tubal ligation for contraception as I cannot take hormones due to my family history of breast cancer. So my fear is I will suffer all of these monthly symptoms which have got worse over the years up to the point of menopause and beyond, with no chance of HRT treatment because of my chances of breast cancer. If anyone has any ideas on how to deal with this or are in the same position as myself how are you coping? Thanks x
Laura
Hey Melissa.. Sorry I only just saw this! You are very much not alone. I would say to join the UK pmdd support group on Facebook if you’re in the UK.. Or the Gia Allemand Foundation PMDD support group.. you’ll learn so much. I know we have some others in a similar situation to you. I would say to make sure you’re going to a Dr who knows what they’re doing… There’s some good ones in the UK.. drop me a message via the viciouscyclepmdd page on Facebook and then I won’t miss any response ❤
J
It’s great to hear I’m not alone. For two weeks out of every month, I’m a ticking time bomb. I’m hard to get along with because I’m angry and frustrated about every little thing. I can’t balance my thinking and thus create reasons to be mad at the people I love that are irrational. It’s effecting my relationships on a catastrophic level. I recently went to the doc and got put on an Estradiol patch. It worked great the first month and isn’t working at all this month. I would go with the hysterectomy but I want to have kids some day… I’m only 26. I’m at a loss and am definitely feeling depressed and suicidal. I haven’t had a drink in 3+ years, but this shit makes me want to. I can’t do it anymore.
Laura
Hey J… Definitely not alone.. There’s a while community out there and they’re very supportive. Where abouts do you live? Feel free to message me via the viciouscyclepmdd page (Facebook) or we’re on Twitter too as @viciouscyclepmd too… I’d really like to chat with you. Going through this stuff is SO hard.. It really is. Sending love and light your way xxx
Ashmore
I was recently diagnosed with PMDD. Learning that PMDD is a genetic issue and not hormonal was very freeing. As I have gotten older (30), the amount of days spent suffering has increased. It got to the point where I was having more bad days than good. I was only experiencing feeling like my normal rational self immediately following my period. Once ovulation hit, it was a perpetual spiral downward, and the week before my period was entirely grim. Days before I would disassociate from everything and everyone. Something someone would say or do would catapult me into extreme rage, paranoia, or insecurity. I compartmentalized my emotions, and always managed to keep the severity hidden. Yet I would often push people away during this time, and if in a relationship I would inevitably break up with them because I knew I couldn’t live like this and be a healthy partner. PMDD has taken so much from me, but I am now ready to fight back and take control. I don’t want to live in fear of PMDD during the few days I have when I feel like myself. I started taking an antidepressant a few days ago and I am hoping the medication helps. To all the women out there suffering, please know you are not crazy and you are not alone. Keep faith, and when you are in that dark place remind yourself in a few weeks your brain wont be hijacked. And when it is not hijacked, please reach out and get help. PMDD is real, and I have been so close to losing it all time and time again. You are worth it, and you are not alone.
Laura Murphy
Love these words! Sounds like you are doing soooo well. PLease do join the UK PMDD Support group on Facebook if you thing it will be helpful – the Gia Allemand Foundation website is also super helpful and their Peer Support Program is free and available to all xxx
Felicia
I was diagnosed with PMDD about 4 months ago. I was initially diagnosed with depressive disorder, ptsd and panic disorder. I always felt like it had to be something else because with depression your depressed most of the time, I was goimg through 2 weeks where i felt happy, like myself, motivated then all of a sudden for no reason at all complete 180, i became depressed, suicidal thoughts, anger, withdrawn. Completely not me. When i let my Dr know thats when she said i believe you have PMDD. Which makes alot more sense now. I take medication for the panic attacks, medication for the depression and occasional insomnia but at times it still feels difficult to gain some relief from my mind.
Laura Murphy
Hey Felicia – so pleased you got a diagnosis – it can be a real struggle to get! Please do join the UK PMDD support if you feel it might help. I’m on [email protected] if you need signposting to any resources etc xx
LORI B
I have been suffering from these exact same symptoms. Recently my doctor told me i may have PMDD but she wanted me to have blood work done to see. When i mentioned it to my mother she informed me she has suffered from it also. Im not sure if this is what is wrong with me but I pray I find out whatever it is so I can get help. I’m about to turn 30 and every year these symptoms get worse I have 3 kids and I do not want to be this way. I want to be better for them. But I can’t control my emotions at all anymore. I strongly believe I found this for a reason. So thank u 🙂
Laura Murphy
hey Lori – Laura here (from the blog!) – please do shout if I can help in any way. I run the UK PMDD support group and the Vicious Cycle PMDD awareness project – we’re on [email protected] if you need signposting to any help xxx
Jemmah
Hey Ladies,
If have suffered from PMDD for a while now, and I have searched length and breadth for a solution. From 5Htp/L-tyrosine to grain free Paleo diet,to the Yaz pill, biochemical hormones to most extreme a hysterectomy. The NHS are not equipped nor have the knowledge as to exactly why PMDD occurs. Their solution is to tell you your exaggerating and it’s just depression, and send you off with happy pills? Don’t get me wrong I know antidepressants do help people, but they have horrific side effects and they are not a long term solution for any women suffering with PMDD. It’s like putting a dirty plaster on a wound that won’t heal. Im glad there are forums like this one to assist in making women feel assured that they are not indeed losing the plot, nor having the need go go and get yourself sectioned. Big hugs
Angie
Hi,
I was recently diagnosed with PMDD. I’m looking for ideas for some sort of solution other than hysterectomy or anti depressants. Any suggestions ? For a natural approach ?
Thank you !
Zdena
Hi Angie,
I have been diagnosed with severe PMS few months back. I have been having CBT therapy which has helped a little and I started to see some hope. However I have had terrible symptoms just few days ago and I really wanted to commit suicide which scares me. I am not sure how I will be able to carry on if this keeps happening each month. I feel so week and I don’t feel comfortable to talk to my colleagues at work about how I feel. To help me I need to be off work for a week each month and that will never happen. I am scared I will loose my job.
Caroline
I have had PMDD since 13 and I am now 40. The Pill, Mirena Coil, Pregnancy made things much worse. I took St John’s Wort but it didn’t really work. 5-HTP is better. I have gone vegan and stayed away from Soya as much as possible as it sent me completely loopy. If men suffered from PMDD then I guess there would be a cure by now. I thought it was Estrogen dominance so I am starting a low estrogen diet but I am really wanting to hear success stories of women who have had early total hysterectomy…..Thanks.
Laura Murphy
hey Caroline – definetly check out the IAPMD website – lots of information there! <3
Alice
I had this. It was awful. The doc put me on antidepressants. They helped but just masked the symptoms. Then I eliminated sugar from my diet. Makes a real difference. Good luck everyone x
Rachel
Hello Laura,
Thank you for this. I have had PMDD for 30 years and have had to sacrifice full-time work because of it. I have tried lupron injections – mixed results – and various diets. Food seems to have a huge effect on the extent of the symptoms for me. I have a question for everyone who has gone through/is considering hysterectomy. Do you mean hysterectomy only – removal of the womb – or a bilateral oopherectomy to remove both ovaries? My gynae is offering the latter and I’m scared because it’s a major op with risk of infection and can cause all kinds of problems later on in life. I’m 42 and thinking of just riding it out until menopause. But a hysterectomy would only remove the womb and not the hormones that are causing the problems.
Laura Murphy
Hey Rachel – I am now 14 months post op – total hysterectomy with bilateral oophorectomy. Happy to chat – get in touch with TOTM and they will pass you my email! x
Claire
Hi Laura I’m under Dr Panays clinic I’ve just started seeing Claire Balone, I’m about to have my first injection to shut my ovaries down on Tuesday, I just wondered how Uve got on with everything and how your doing now!! I’ve had pmdd since 13 I’m now 42 it’s only just been diagnosed in the last couple of years, I no this could be the answer to getting a life back but I’ve been so unwell for so long it’s like I don’t believe il be or find it hard to comprehend I can be well, so I’m very apprehensive and afraid I guess, even though I’d like to be positive and optimistic I just can’t seem to be, I no I have to do it as I no I cannot carry on having no normal quality of life! X x
rebecca
Hi there, I have recently been diagnosed with PMDD, after pretty much my entire life ruined by this condition and not knowing about it. I am due to have the coil fitted on Tuesday Mirana alongside the HRT gel, I am hoping this works as I have tried everything else, including anti depressants.
But, I am nervous and scared that it will make me gain weight and or give me symptoms that are worse.
Any advice me appreciated.
Many Thanks,
Rebecca 38 yeas old, uk