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.
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