The Voices of PMDD: Our Seven-Year Struggle With My Wife's PMDD

Recently on Facebook I came across a conversation where one couple who had experienced PMDD was reaching out to help another. The first woman had asked her husband to write a letter to the other woman, to help the second woman explain PMDD to her husband. She then posted his letter on Facebook. I knew right away this man's wisdom and clarity could help so many others...so I asked the couple if I might share the letter on my blog, and they graciously agreed.

Her name is Twilah, and she has a blog of her own, one having to do with navigating the American medical system. His name is Alec Johnson, and here is his letter:

I was asked to write this in an attempt to explain PMDD from my perspective as a husband who has experienced PMDD. I am also a Clinical Scientist with a quarter century experience in medicine and healthcare. I can tell you from my experience, PMDD is one of the most difficult disorders [to diagnose and cope with], for both the patient and her family.

I speak from seven years of experience living with my wife, who was Jekyll and Hyde. I only hope to provide some assurance to you that your feelings of frustration, anger, hurt, and disbelief are normal and understandable.

I also wish to convey from a clinical standpoint that your wife is not making anything up, nor is she able to control her disorder. Even if she had the greatest willpower of any human, she cannot will a hormonally-mediated disorder away.

My wife is a very intelligent, driven, and willful person whom I adore. That's why I married her! When we met she was a runner who ran 4-6 miles every day of the week. She was less than 10% body fat, and thus did not have periods. It is common for women with this low amount of body fat to stop menstruating. When we began dating we went out to dinner often, and shared more than a few bottles of wine. This slight change in her lifestyle over approximately 2 years caused her to gain a small amount of weight. Maybe 8-10 pounds on her 105-pound frame was enough to restart her hormones and periods. She began to change.

I noticed her becoming moody and anxious as well as not being very nice to me. I marked it off as stress from our upcoming wedding and honeymoon as well as normal work and life stress. Things were mostly fine and then one morning she called me from the emergency room saying she wanted to kill herself. This was all completely from left field. I had no idea what was going on.

My wife had been experiencing PMDD for a number of months at that point, and was doing okay at suppressing the symptoms. On this particular day she could no longer control the most powerful human chemical, hormones. Hormones are intensely powerful chemicals for both men and women. I would imagine you and I are at least similar in experiences as teen men. You most likely remember the intense desire for girls. Hormones, and particularly testosterone, were front and center in that. You and I could no more control that intense desire that my wife could control her desire to die due to progesterone and PMDD.

I will not bore you with many details, but she and I went through hell for 7 years before her PMDD was eventually properly diagnosed and treated.

PMDD primarily manifests as a mental disorder. It appears as if the woman is depressed, or anxious, or suicidal, or any number of mental disorders or combination of mental disorders. My wife was treated with every depression, anxiety, and mood compound known to man—with no positive effect. There were numerous bad side effects though. After 4 years it was obvious that it was directly linked to her hormonal cycle. For about 2 weeks of the month she was perfectly normal. Then every month without fail she would wake up as a person I didn't recognize.

She was suicidal, depressed, and most of all had the worst anxiety imaginable. We told every physician we could tell that her symptoms were hormonal and directly linked to her cycle. They gave her more mood drugs and ignored the hormonal aspect.

Finally quite by accident she saw a reproductive endocrinologist doctor. This physician not only recognized PMDD, she knew how to treat it appropriately. Some women can be treated successfully with birth control pills or psychiatric drugs. Some women can't take those because of side effects or other reasons. For some women there are only 2 cures for PMDD, either a COMPLETE hysterectomy, or menopause.

To prove that it was PMDD, the reproductive endocrinologist prescribed a drug named Lupron. This is a once a month or once every 3 months injection. My wife was to take the injection for 6 months. Lupron shuts off the ovaries and hence mimics menopause or hysterectomy. After a couple of weeks on Lupron my wife was back. It was completely obvious that what we had been telling many doctors for years was true. She had PMDD. No amount of willpower or mood drugs was going to fix or control my wife's complete [and biological] inability to tolerate progesterone.

Progesterone intolerance made her crazy and out of control, and controlled our lives for 7 years.

After 4 months the side effects of Lupron became debilitating, so the doctor referred my wife for a complete hysterectomy. That's when the real hell began. From the time between when the Lupron wore off and before the surgery could be arranged, my wife's ovaries rebounded. They produced massive amounts of hormone in an attempt to bring her absent hormone levels back into range. It was so bad I truly believed my wife would be arrested and put in jail before we could get her into surgery. I could tell you stories...

She finally had surgery on 24 December 2014. Literally the next day my wife looked at me and said, "I feel a calmness I've not felt in many years."

She was cured and our life together saved. This is our story.

I would imagine that right now you are experiencing the worst PMDD has to offer. Please understand that your wife can't will her PMDD away. She cannot "just try harder." She cannot simply "pull herself up" and "get it done" at times you might feel she should. I COMPLETELY understand. I'm sure I was not the nicest husband all the time when we were going through our hell. There were times I could barely maintain my sanity.

The only things that got me through was my love for my wife and knowing it was not her fault or choice. If I ever thought she could have chosen to act differently and she just chose not to, I would have left. Thankfully I knew it was not her fault.

From someone who has been in your shoes, I ask you to please understand your wife needs you more than ever. I know how completely maddening and frustrating it is to deal with right now. Get her to a reproductive endocrinologist who understands PMDD. Make peace with the fact that she may need birth control, psychiatric medication, or even a complete hysterectomy, and do what you can to get her the necessary treatment.

If surgery is appropriate do not allow a doctor to leave either of her ovaries. Ovaries are the problem.

As an aside, both my wife and I had our DNA sequenced for genealogy purposes last year. After that we found a website that would analyze our DNA and give us health information. It shows my wife has a known genetic mutation that makes her unable to metabolize her own progesterone.

I didn't need a DNA test to know that, but it was a nice confirmation of what we had experienced.