How a diagnosis of premenstrual dysphoric disorder changed this P.E.I. woman's life

·5 min read
Sharon Gillis of Cornwall had lived with premenstrual dysphoric disorder for more than 20 years until she got a diagnosis in 2018. (Thinh Nguyen/CBC - image credit)
Sharon Gillis of Cornwall had lived with premenstrual dysphoric disorder for more than 20 years until she got a diagnosis in 2018. (Thinh Nguyen/CBC - image credit)

Sharon Gillis remembers sitting in her doctor's office in 2018.

In front of her were stacks of paperwork where she had been tracking her menstrual cycles, with charts and notes on how mood symptoms like extreme depression and anxiety always showed up in the weeks before her period.

"I'm done," Gillis recalls telling the doctor, a specialist in obstetrics and gynecology. She had been trying everything, from lifestyle changes to birth control. Her moods didn't improve in the lead up to her period.

The doctor asked her about the symptoms. Gillis said she had been reading about a condition called premenstrual dysphoric disorder (PMDD) and she might have been living with it for over two decades.

The doctor read through all the paperwork, then handed it back to Gillis.

"Okay, here's what we can do," the doctor said before explaining the available treatments for PMDD. And that was the moment Gillis knew her life had changed.

"For me to walk in and just be heard and have options and have someone explain and support me through them changed my whole life," she said.

Thinh Nguyen/CBC
Thinh Nguyen/CBC

Five to 10 per cent of people who menstruate are affected by PMDD.

'It affects your moods so drastically'

PMDD has a long list of physical and mental symptoms including lability of mood, heightened anxiety and severe depression, said Dr. Alison Shea, an obstetrician and gynecologist at St. Joseph's Healthcare Hamilton in Ontario. She said patients have to meet at least five symptoms on that list to be diagnosed.

"And they need to be significantly impairing either your work function, your school function or your relationships," said Dr. Shea.

Gillis knew what that was like.

For 20 years since her first cycle in the mid 90s, she said she didn't know what was going on with her mental state in the two weeks leading up to her period — also known as the luteal phase.

"It affects your moods so drastically. You can go from feeling very bubbly and happy and easy to be around one day and wake up the next day and, you know, just feel mean and angry or depressed," she said. "And it affects your impulse controls. You lash out over little things."

Thinh Nguyen/CBC
Thinh Nguyen/CBC

Gillis said the condition also strained her relationships with those around her.

"It can be very confusing for other people to think 'What did I do?' or 'Why are you behaving this way?' when it's not really a choice. You're doing everything you can to contain yourself," she said.

Since PMDD was added to the Diagnostic and Statistical Manual of Mental Disorders in 2013, more information about it has become available. One day Gillis stumbled upon a post about PMDD, and it all made sense to her, she said.

"For years, I thought my story was uniquely painful, but there were so many others."

She began to read more about it. She started tracking her cycles. And she saw the patterns form, how symptoms would show up in the luteal phase, then her period would arrive and she would feel like herself again.

Then came that day in 2018 when Gillis finally got the PMDD diagnosis.

'It's done. I'm so happy'

Her doctor prescribed Lupron for Gillis.

Dr. Shea said she has prescribed the same medication for many of her patients.

"It puts you into a pseudo-menopause type of state, so that you don't have any fluctuation in hormones at all," she said.

Gillis was on the medication for nine months, during which she said "there were a lot of highs and lows."

Then in April 2019, she had surgery to remove her uterus and ovaries to permanently stop the PMDD symptoms.

The morning of her surgery, her mother took her to the hospital. Gillis said she burst into tears as she was getting settled and hooked up with machines while chatting with an anesthesiologist.

"I think everyone in the room thought I was scared or I was having second thoughts and stuff and they were trying to be like, 'It's fine, we're going to take care of you,' And I was like, 'No, no, no, it's done. I'm so happy.'

"I'm crying because I'm relieved because this is done now," she said. "There were a lot of emotions to feel like I was finally going to be okay."

The medical term for Gillis's surgery is a total hysterectomy with bilateral salpingo-oophorectomy.

Dr. Shea said it's the last line of treatment. She said two of her patients who have been treated with it had experienced significant suicidal ideation in the weeks before their periods.

"We try to reserve that for the most severe cases because taking out the ovaries earlier can put you into a surgical menopause. And there are many benefits from the ovaries," she said.

"It's a big surgery and taking the ovaries out, it's not something that you can undo. So it's certainly something that is an important consideration and certainly should not be taken lightly," she said.

Thinh Nguyen/CBC
Thinh Nguyen/CBC

Still a work in progress

Today, it's been three years since the surgery. Gillis said the PMDD symptoms don't happen anymore, but there's a lot of emotional healing that still has to happen.

"It would be irresponsible to make people think they could just go have a hysterectomy, and it would all be better. I spent over two decades feeling like nothing was OK," she said.

"And the medical gaslighting, I've had people get angry with me and say, 'Oh, fine, just blame it on your period, whatever,' as if I were using it as an excuse when I just desperately, desperately wanted to be well."

Shea said she has also heard from some of her patients about how their symptoms were not taken seriously, even when they were admitted to hospital with suicide attempts.

That's why Gillis has become more vocal about PMDD. She has been documenting her journey living with it and getting treatments on her Instagram account. Last November, she spoke at an event in Charlottetown to share her experience and hand out flyers to raise awareness.

"I hope that by sharing it and by getting the awareness out, it helps someone else gets their path to treatment a little quicker and makes it easier for someone else."