The PMDD chronicles: How a lack of awareness is impacting women with severe PMS

18 hours ago

A woman anxiously waits alone in a crowded emergency room, overwhelmed by the fear that she might harm herself due to the intensity of her PMS.

Some might think it sounds like an overstatement, but it's true. Premenstrual dysphoric disorder (PMDD) is a serious and intense version of premenstrual syndrome (PMS) that many women around the globe deal with. Unfortunately, it hasn't received enough research attention as a long-term health issue.

"Your mind is stuck in a loop, constantly echoing the same message: 'you should end it all, you should end it all, you should end it all,'" shared Kim Cormack, a playwright living with PMDD.

"I felt like I was losing my mind."

Kim's Journey: The Fight for Answers

Prior to being diagnosed with PMDD, Kim often felt dismissed by doctors. Many male practitioners attributed her symptoms to stress. However, in 2020, when Kim’s condition significantly deteriorated, she visited a female general practitioner who referred her to the hospital, where she finally felt heard and understood.

Kim’s struggle to receive a diagnosis is not uncommon. Dr. Rachael Crystal, a family doctor, noted that the challenges often arise from the various symptoms a woman may show.

She noted that, in the past, many women faced significant challenges in receiving the healthcare support they required. However, she expressed optimism that this situation is gradually improving.

In the UK, there’s considerable discussion about using the phrase "premenstrual syndromes" to ensure that women are included. This is important because the current guidelines for diagnosing PMDD are fairly strict.

Dr. Crystal clarified that for a woman to be diagnosed with PMDD, she needs to experience at least five out of eleven established symptoms that seriously impact her daily life. This means that someone who only reports two symptoms, regardless of how intense those may be, does not meet the necessary criteria for the diagnosis.

At present, the exact cause of PMDD remains unclear, and there isn't a dedicated cure. Experts suggest that it may be related to how some individuals react to fluctuations in hormone levels throughout their menstrual cycle. To address this sensitivity, treatment approaches often focus on management strategies, which may include hormonal therapies, such as the use of birth control pills, as Dr. Crystal noted.

Kim was given Prostap, a medication that temporarily halts the activity of the ovaries and the production of estrogen, effectively inducing a temporary chemical menopause. While this treatment can alleviate symptoms for those with PMDD by interrupting the usual hormonal cycle of the ovaries, it may also lead to significant side effects such as hot flashes and reduced bone density.

Kim handles her hot flashes by using a cooling wrap, but she requires Hormone Replacement Therapy (HRT) because her bone density is low.

Regardless of everything, she sees herself as an optimistic individual. However, the suicidal thoughts related to her PMDD have led Kim to seek assistance at the emergency room multiple times. On one occasion, the paramedics who responded to her call were unfamiliar with the condition entirely.

Kim expressed that she believes the primary necessities are introducing early education in schools and providing updated training for healthcare professionals regarding women's hormonal and mental health.

"Without this, it becomes very difficult to access the essential mental health support needed to prevent crises and suicidal thoughts."

After exploring various treatment options, Kim is currently on a waiting list for a complete hysterectomy. While this is a drastic choice, it could be a lifesaver for her.

This year marks the 40th anniversary of the National Association for Premenstrual Syndromes (NAPS), which is managed by dedicated volunteers, including CEO Jackie Howe.

It offers resources for those dealing with PMS and PMDD, hosts events for experts in the field, and backs research focused on women's health. NAPS recently held a highly successful professional conference, and they are planning to establish hubs throughout the UK.

Jackie mentioned, "When NAPS was established, there was essentially just one individual offering assistance to those dealing with PMS, a woman named Katharina Dalton."

"We provide guidance, assistance, and support. By becoming a member for just £25, you'll gain access to a vast amount of valuable information."

She mentioned that treating PMDD must be customized for each person since symptoms can vary widely from one individual to another, which requires careful consideration. At NAPS, Jackie has encountered women who have spent years seeking a diagnosis, including one case where a woman has been trying to find the right diagnosis for 30 years.

In addition to hormone therapies, doctors might recommend adopting healthier habits like improved nutrition and physical activity, or they may suggest antidepressant medication.

Jackie went through intense postnatal depression, leading to significant premenstrual syndrome (PMS). By tracking her symptoms in a journal, she noticed that her most challenging days often aligned with her ovulation period.

She mentioned, "I experienced three really tough days, as my depression hit me unexpectedly."

"While I might be talking to you right now, I could unexpectedly feel a deep sadness that lasts until my period starts, and then it would gradually fade away."

Jackie emphasized how crucial it is to keep track of your menstrual cycles and record any symptoms, as these can vary. You can jot down your symptoms in a journal or use a period-tracking app to monitor them.

You can bring this documentation to your doctor to demonstrate that your symptoms follow a consistent pattern.

Dr. Mahshid Nickkho-Amiry, a specialist in gynecology and fertility, discussed the symptoms of PMDD. These symptoms can encompass a range of issues, including suicidal thoughts, fatigue, and feelings of anxiety. She also mentioned that physical symptoms may involve headaches, sore muscles and joints, as well as difficulties with sleep.

The symptoms happen during the luteal phase of the menstrual cycle, which typically lasts about two weeks, although it can be shorter or longer. This phase is the period between ovulation and the onset of menstruation.

Phoebe's Journey: The PMDD Initiative

Phoebe Williams founded The PMDD Project, which became a registered charity in April, to help ensure that other women wouldn't feel as isolated as she once did. After experiencing years of turmoil and uncertainty about the source of her symptoms, she was determined to make a difference.

Phoebe has experienced a beneficial change since she got her diagnosis, but it still significantly affects her daily life.

She stated, "It's considered a disability due to the significant challenges it presents."

"For a week or sometimes even two weeks – which is the case for me – I struggle to operate like I usually do; my thinking changes a lot."

On August 4th, the PMDD Project organized a Self Love Club event at Grub in Manchester. This gathering perfectly represented the charity's mission of promoting support and awareness. It featured educational discussions and engaging group activities.

Phoebe expressed her happiness, saying, "It was wonderful to see a lot of people, not only from the PMDD community, join us for our inaugural Self Love Club meeting."

It was wonderful to watch individuals come in feeling anxious and unclear about expressing their creativity, only to leave feeling empowered and beaming with joy, pleased that they had stepped out of their comfort zone.

Additionally, we were able to guide those who are having difficulties with their menstrual cycle to the appropriate support. We're really looking forward to the next event!

When they're not planning events, The PMDD Project is advocating for the inclusion of PMDD in medical school programs. Phoebe has discovered that many general practitioners are unfamiliar with PMDD.

Dr. Amiry and Dr. Crystal both noted that while awareness in this field has grown, there is still a need for more research and financial support.

Kim has taken on the role of a trustee for The PMDD Project and is leveraging her understanding of PMDD to create a community theater initiative.

She mentioned, "It'll be really amazing to talk to others who have PMDD and transform their stories into a script."

Whenever you're facing tough times, the Samaritans are available to help you, no matter the hour or day, all year round. You can reach them at no cost by calling 116 123, sending an email to [email protected], or checking out www.samaritans.org to locate the branch closest to you.

You can find a comprehensive list of PMDD symptoms and more details on the websites Mind.org.uk and the NHS at https://www.nhs.uk/conditions/pre-menstrual-syndrome/.

The PMDD Project is dedicated to gathering financial support for research aimed at understanding the causes of PMDD, finding effective treatments, and eventually discovering a cure. You can learn more about their efforts on their Instagram page: @thepmddproject.

You can discover more resources and details about premenstrual syndromes by visiting the NAPS website at https://www.pms.org.uk/.

If you're experiencing suicidal thoughts or contemplating self-harm, please call 999 or visit the nearest emergency department right away.