For Hannah Lenehan, 33, every month is the same.
For one week she she feels “normal.” The next week she describes as a week of pain in her ovaries. The week after that she feels severely moody and agitated.
“Some months I can control it ― some months I can’t as well,” she told The Huffington Post. During the “moody” week she is extremely sensitive to noise and gets angry for no reason, she said. Lenehan does not take long vacations because she uses up all the days she can be away from work as sick days.
“People don’t understand how it feels inside,” she said. “You don’t want to act this way.”
The last week of the cycle is the one when her period comes ― “fatigue, irritability, severe breast pain, mind-numbing cramps, leg pain, diarrhea,” she explained.
For Lenehan, that’s what it means to live with premenstrual dysphoric disorder, or PMDD.
Doctors have long categorized the condition as a severe form of premenstrual syndrome, since the symptoms come in a predictable cycle around ovulation and the days of a woman’s period. Some symptoms overlap with PMS, like bloating, headaches, pain, cramping and fatigue (though for most women the symptoms are exponentially worse).
But the other major difference between PMS and PMDD is that for the 2 to 5 percent of women who suffer from PMDD, crippling depression, anxiety or another mood disorder prevents them from going about their daily routines.
Researchers have long suspected that women with PMDD have a different sensitivity to the sex hormones they release when they are menstruating, and that causes the extreme symptoms they suffer. And a recent study provided some of the first evidence that a genetic irregularity may explain why some women’s bodies are more sensitive to those hormones than others.
“A lot of [women] think that doctors don’t really believe in this and they’re kind of stuck with it because constitutionally they’re not able to deal with symptoms that other women are able to deal with,” Peter Schmidt, chief of the Behavioral Endocrinology Branch at the National Institute of Mental Health, a PMDD researcher who led the recent study, told HuffPost.
The evidence suggests the exact opposite, Schmidt said. “There is evidence that there is a biological explanation for these symptoms.”
And that’s a big step forward in better care for patients with PMDD, in terms of recognizing it’s different from PMS and finding the right treatments for patients.
Currently doctors prescribe several therapies for PMDD, ranging from hormonal therapies to antidepressants to painkillers. No one treatment is considered a cure for the condition, however ― nor does any one treatment work for all women.
“I just was always made to feel like I was crazy or weak because this consumed so much of my life.”- Hannah Lenehan, 33
Lenehan has been living with PMDD since she was 10 years old. Her doctors have prescribed drugs for anxiety and birth control, and she currently takes a prescription painkiller each month before her period is scheduled to start, which helps somewhat.
“I just was always made to feel like I was crazy or weak because this consumed so much of my life,” she said.
She emphasized the importance of getting support from others. “Talking about it ― that is the best medicine of all.”
HuffPost talked to five other women with PMDD. Here are their stories in their own words, including what they wish everyone knew about what it’s like to live with PMDD:
“I needed to hide from everyone.”
My symptoms began at age 11 prior to me starting my first period at age 12. My parents thought I was a normal, snippy, pain-in-the-rear teenager, but I always knew there was a darkness inside that I needed to hide from everyone.
I was formally diagnosed by a women’s health psychiatrist with PMDD in my late 20s. I complained to my [doctor] that my monthly symptoms were preventing me from being social and “normal” and she referred me to the psychiatrist because she suspected PMDD. Her insight and referral saved my life.
I am an incredibly outgoing and active person with a love for people and animals. My sense of humor and need to protect everyone around me from my depression, anxiety and suicidal thoughts kept me going for decades. From the outside, no one knew I was suffering because I put on such a great show. Inside, however, I was always exhausted and relatively reclusive.
― Cathy Adolph, 41
The pain is like childbirth.
I was diagnosed with PMDD just last year, but have had symptoms since my first period.
For two weeks out of every month I have severe depression. And on top of that I have about three days of pain. The pain is akin to the labor contraction pains I had when in childbirth. (Only I don’t get an adorable baby out of these ones.)
The depression makes it difficult to function, to get out of bed, to shower, to care about anything. I am the sole earner for my family, so not going to work is not an option for me. I use all the energy I can muster to get myself ready and through the workday. When I get home, I’m spent. I end up curled up on the couch with a heating pad. I often end up sleeping there because I’m up throughout the night due to the pain.
It’s just a really vicious cycle. Then I get two weeks of feeling like a normal person before doing it all over again.
I have been really lucky to have finally found a doctor that knows what this is, and diagnosed me. I’ve talked about my symptoms with over 10 different doctors. I’ve had one that listened. She didn’t treat me like I’m just complaining.
― Catherine Bergstrom, 38
“I’m basically out of commission.”
I feel great for 21 days out of the month, but I have to use that time to get everything done and prepare for that last week where I’m basically out of commission.
Those days, I pretty much sit on my hands and don’t leave the house. Not a good idea to do ANYTHING ― don’t interact with anyone, don’t drive, don’t post on the internet, don’t try to make sense of what is happening. Just sit quietly and wait it out or it’s a disaster. I call it “trying not to blow up my life.”
Shortly after behaving oddly, the thought often goes through my head: “Why did I just do that? That’s not something I do. That’s not something I would say. I don’t even care about that.”
― Mandie Cain, 31, who has had symptoms since her first period at age 12
They told me I was a woman ― suck it up.
I started having problems at age 14. Serious bloating, incredible pain that ached down into my legs. As the years went on, the problems became worse and worse and the emotional turmoil left me curled in a ball under the covers. This continued for years. Yes, I still worked and just figured that’s the way things are. Went to numerous doctors (men) who basically said I was a woman and should expect that ― like, suck it up, buttercup.
Through the years, various doctors tried different hormone treatments. Birth control pills worked best. Progesterone made me insane.
Having a hysterectomy was the best thing that ever happened. Within two weeks I felt like a whole new person. Literally. Before, I had only felt good for two weeks out of four. I suffered like that for years and years, so to feel great all month was a miracle for me.
― Karen Kohn, 65
“Keep looking until you find the help YOU need!”
My daily life [used to be] miserable during the two weeks before my period. I had unbelievably painful cramps. I was moody, crabby and bloated.
My first OB/GYN wouldn’t take me seriously until I had my husband call her. The receptionist said that they could see me “next Tuesday” and my husband said that I would have killed someone by then.
She put me on Xanax for the two weeks before my period started, which helped, but only caused me to become dependent on the drug. That was bad, very bad.
I had PMDD for about 20 years, but it was not diagnosed until 2003. My doctors just thought I had a bad case of PMS. I wish other women would please seek treatment sooner than I did. If what the doctor prescribes doesn’t work, tell him/her. Find another doctor if necessary. Keep looking until you find the help YOU need!
― Karlya Ann Boone, 54
Sarah DiGiulio is The Huffington Post’s sleep reporter. You can contact her at firstname.lastname@example.org.