PMDD: My diagnosis and treatment story

Today's post is going to discuss topics of menstruation and feminine related health conditions.



If you're new to my blog, you may want to read this post first which provides you with some background information on my conditions.

You may also find my post on menstrual pain relief useful if you're hunting for tips on how to ease those troublesome period cramps.

I have had PMDD, or Pre Menstrual Dysphoric Disorder since the age of 18. Typically this is the age that this condition sets in for those who suffer it but of course there's variables and it can happen much earlier or much later. For me, it was at this age my symptoms first surfaced.

Until this time I had always suffered painful periods (Dysmenorrhea) and I believe the years of suffering with physical pain and sickness contributed to me getting PMDD.

I know I'm experiencing PMDD when I begin to feel debilitatingly hopeless, depressed, anxious and irritable (usually) exactly 10 days before my period. Characteristics that don't fit with my 'real' personality if you will. These symptoms last until I start my period. Once my period arrives, I am the 'real me' again. I am calm, happy, rational, relaxed and content.

It wasn't an easy path to diagnosis for me. When my PMDD first began I had no idea what was happening to me. I knew that my mood went south for some reason every month but I had no idea what PMDD was. It was my own individual research that brought light to my situation. Whilst trying to find a solution to my dysmenorrhea I stumbled upon a website dedicated to menstrual health. I found a list of symptoms for PMDD on my screen and then noticed I was checking them all off one by one. I was horrified and relieved to have some answers all at once.

Before my diagnosis I believed there was something emotionally 'wrong' with me. I thought I needed counselling and would often attend sessions at university to try and 'cure' myself. Looking back, I can only feel disappointment and sadness that I was driven to thinking I was 'broken' if you will. I pushed away so many people because I believed I was too 'broken' to deserve their kindness.

Throughout the years I needed medical notes for various purposes (university tutors, employers, etc) to explain my emotional and physical difficulties with my periods. That part has always been hard for me. Having a condition like PMDD is not the same as having something like chronic muscle problems. Most people accept someone with mobility issues and believe that their condition is valid and real. Most people don't wince when the topic of mobility is brought up. You don't ordinarily have to use euphemisms when you want to talk about muscles and their movements.  You can speak about those topics aloud and most people don't have a problem with it. It's not a 'gross' or 'embarrassing' or 'secretive' topic.

The moment I have to bring up my condition I feel like I'm being perceived as a 'drama queen' or sometimes made to feel as though I should just take some painkillers and move along. That I should sugar coat the fact that I bleed heavily because it's 'gross' and 'nobody wants to hear about that'. I'm frequently made to feel like I should find ways to cope and keep quiet. But unfortunately PMDD isn't a condition that can be sent on its merry way. No chronic health condition is like that. And I wish I was just a drama queen. Then I could stop and my condition would be gone. And I'd party like it's 1999.

I hate having to tell strangers that my uterus bleeds so heavily it cripples me with severe pain causing me to vomit for hours. (Not because it's shameful but because it's not something I find comfortable doing personally.) I hate having to tell strangers even more that just before my period I experience debilitating mood changes. Because PMDD isn't recognised as a mood disorder (I won't get into too many technicalities but it is actually a physical disorder with mental side effects). I hate more that most people believe that because I take medication to manage these conditions that it means I'm suddenly not allowed to show signs of experiencing my symptoms ever again. Or that if I do it means I'm able to cope with them completely. Not true by the way.

Even more disappointing and disheartening are people who imply I'm a weak person that's unable to cope with life if I ever dare show my symptoms. These types of accusations have frequently come from tutors and employers in the past. This infuriates me so much because it's complete bullshit and even if it wasn't there's nothing wrong with not being strong or not being able to cope 100% of the time because you have a chronic health condition or otherwise. I consider myself a very strong person. I'm durable, I'm adaptable. I don't freak out easily. To have my character picked to pieces over a condition I didn't choose to have is endlessly frustrating. I personally don't feel comments should be made on what sort of a person I am based on the fact I suffer PMDD. I wish that were always the case.

Medical notes I have passed over for school, university or work always read that I suffered severe PMT. Something I wasn't aware of for a long time because the notes were sealed and I never saw them, I simply passed them to whoever needed them in the sealed envelope they were provided in. (Add that I was told to keep them sealed.) I later found out that doctors use this term in place of PMDD on my medical notes simply because most people don't know what it is and PMT is easier for most people to understand. Perhaps this is at least one reason why certain kinds of people make sweeping generalisations about the character of a PMDD sufferer. If I had known, of course I would have questionned it.

I was asked to keep a record of my symptoms many years ago and the same doctor who requested I keep the records just took a quick glance and then cast them aside when I presented them. The second one completely patronised me and told me all I needed to do was 'stop eating junk food' if I wanted to help myself.

Forward many years later and I took it upon myself to once again keep a record of my symptoms for 6 months. The results were alarming and everything pointed to me having PMDD once more. Having to demand your own condition be referred to correctly isn't something I should have had to have done. I still count myself lucky though, because fortunately I escaped being completely misdiagnosed which often happens to PMDD sufferers initially.

And I agree, it is an unfamiliar condition. But referring to chicken pox as flu is not accurate and treating one kind of condition with medicine intended for another won't work. So really, PMDD should be called PMDD. I had to insist (politely of course) they stop referring to it as PMT and they agreed to immediately.

I just wish that my doctor had educated me on what I had sooner. PMDD ruined a significant amount of my life before I found a suitable treatment.

 

I am very thankful I live in a time where medication is available to me and even more thankful that mine manages my condition greatly for the most part. There was A LOT of trial and error before I found medication that suited me. I was also diagnosed with PCOS during this process so that required me to try more medication.

Treating PMDD can be hit and miss. You have to give things a good go before you dismiss them and unfortunately PMDD isn't curable. The most you can do is manage the symptoms, not make them disappear.

My painful periods and PCOS are both managed with a progesterone only birth control pill whilst my moods are balanced with Fluoxetine, an anti depressant designed to treat PMDD.

I take the progesterone only pill every 3 months so unfortunately I still find myself suffering with pain and vomiting during those months I take a break in between but it's alot easier than suffering every single month and it interferes much less with my life as a result. When I am sick, I use anti sickness tablets (though they never work to be honest) and painkillers.

I'm beyond relieved that after 10 plus years of constant suffering I have answers and a way to manage my health conditions.

With that, I'd like to offer advice to those who are looking to discover the cause of their symptoms and who suspect they may have PMDD. This definitely isn't professional medical advice but hopefully some of these tips can help you to find your own answers and solutions.

Keep a record of your symptoms for at least 4 months. You need to record symptoms for a while in order to see if there is a pattern developing.

Be completely honest and be vigilant with recording your symptoms. There's no use writing down that you were a little unhappy if you were really very depressed. Nor is there any point in keeping a record for 1 month because this won't help you to identify what's wrong. 

Look out to see if you feel like yourself again as soon as your period begins. If so, you may have PMDD. If your symptoms last all the time it's likely not PMDD.

Don't be scared to get a second opinion if your doctor isn't being helpful. Sometimes doctors can be dismissive but if you don't speak up or find an alternative opinion it's unfortunately you who will suffer the most. It's scary, yes, but there ARE doctors out there who will take you seriously.

Your condition is real and it's valid. You're not a 'drama queen' and you deserve help to take steps to feeling better and managing your PMDD.

Learn management techniques. Therapy, mindfulness and meditation have been very effective in helping me to manage my conditions. Find something that you're comfortable with and give it a chance to work. If you've given something plenty of time and it hasn't helped, then choose another method.  Talk to your doctor about your options.

I hope you enjoyed this entry.


Let me know your experiences or thoughts in the comments.