Hi! So if you find yourself reading this, it's likely you (or someone you care about) might be realising that there is a possibility of having PMDD. You're probably feeling a bit overwhelmed and not sure where to start. Never fear! You are not alone. We have all been there ourselves and we're here to give you some tips about what to do next.
Here are a few good places to start:
READ & LEARN
Read information from reputable sources. Learn exactly what PMDD is, and what you can do to help yourself. Take the time to print everything you can, sit, get the highlighting pens out and LEARN. This is your best preparation for self-advocacy. We recommend reading everything there is on offer on the International Association for Premenstrual Disorders (IAPMD) website. There have been some good books written about PMDD too.
2. GET SUPPORT
PMDD can be scary and it can be really isolating. Peer support is something we have found extremely valuable. Having people who understand what you are going through from experience is priceless. There are numerous closed support groups on Facebook - ones for patients, parents, partners, those with religious beliefs, non-binary and trans sufferers etc. Check out our 'support' page for links and information. Also, IAPMD offer free, confidential one-to-one peer support, which we would highly recommend.
If you think you have PMDD, it is really important that you start to track your cycle. This means getting a period tracking app (such as Me v PMDD) or a print out version and you need to start tracking your symptoms on a daily basis. You also need to make note of the severity of the symptoms using a scale and note any impact they are having on your work/school/home life.
4. FIND THE RIGHT DOCTOR
Sadly, training on women's health is way behind the times in most countries. PMDD is still a relatively new diagnosis and so many doctors are not aware it even exists, let alone trained in it's management. But as we know - it exists and it is very real! First line treatments for PMDD can be prescribed at GP level. Further treatments are done at specialist level. IAPMD have an interactive map where patients can recommend providers whom they have seen, who have good knowledge of PMDD and how to treat it. No one listed near you? Don't worry - there is also a guide of how to find someone closer to home.
We wish we didn't have to say this - but prepare to advocate for yourself and for your treatment. It is a common occurrence for patients to be treated by doctors who have limited to no knowledge of treating PMDD. This is why it is SO important to read and learn evidence-based research and go into appointments armed with treatment plans printed out and your tracking information. If you do not feel strong enough to advocate for yourself, take a trusted friend or family member with you. If you feel that you are not being taken seriously, get a second opinion and/or make a complaint.
6. KEEP GOING!
PMDD is tough - really tough. It can be relentless, confusing and exhausting. Keep on keeping on. It can get better, it really can. There is a whole global support network of people out there who will listen, support you, share their experiences and understand. Check out #pmddpeeps on social media to find others!
You’ve got this!