Hello and Welcome!!

~Seek first to understand, then be understood~
If you're looking for information on a particular topic, type that word in the search box below. If I have written about that subject, a list of posts will appear. If no posts come up, I haven't written about it...yet. Emails, and questions in the comments section for possible posts, are welcome.
I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace

Thursday, January 28, 2016

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. 


  1. I have had PMDD for years. I knew something was wrong with me and it was a relief to finally get diagnosed right so I could get the right treatment. I live with my boyfriend and I’m the mother of his children, otherwise, I think he would have left me a long time ago. I love him, so it’s upsetting to me when he seems so far away from ever accepting that I have a real medical condition. When I’m premenstrual I feel no happy, no love, no patience, no energy. I just can’t feel any of those things. He worries and says things like nothing makes you happy anymore and you cry all the time and you’re not being very nice to the kids. He might as well be listing the symptoms of pmdd, but he still doesn’t get it. He wants me to be happy. I want to be happy too, but I’ve accepted I have this condition and there will be days I can’t be. I just try to not hurt those around me and I endure how I feel and hope I start soon. He thinks I need to get a new job, go to school, read more, go out with the kids, get a new hobby, or do some service. Mostly, he thinks I’m not doing enough right and that I’m doing something wrong in my life preventing me from being happy. What he says and what he thinks of me, makes me feel worse; so much that when he’s gone, I have minimal symptoms. It makes sense that separating would make me happier, but it would make me more happy if he genuinely thought I was okay even when I’m having a bad day. For you boyfriends and husbands out there, good for you for looking into pmdd. If your girlfriend is her happy normal self most of her cycle, she probably has her pmdd under control. If there’s a day or two she hates everything about her life and can’t handle anything, check the calendar. It’s pmdd, not her bad attitude, not her horrible life, not you, not how she really feels. It’s how her brain is reacting to her hormonal changes. Look at a chart of how her hormones rise and fall with every cycle. That is how she feels, up and down. It sucks. Keep checking out this blog. There are things you can do to help, and there are things you may be doing that make her worse.

    1. I think it makes you metabolize the hormones faster so when they get low three days before your period, all the happy goes out of your body. I found that taking estroven makes me normal within an hour. It seems like it delays my period, but for whatever reason it helps. I am not a doctor, so seek advice.

  2. What is the known medical genetic mutation that makes women unable to metabolize our own progesterone? I'd really like to know and get tested ASAP. It could make my decision whether or not to get a hysterectomy much easier.

    1. Amanda, in the second paragraph where it says "she has a blog of her own" please click on that and it will take you to Twilah's blog, and she will have a contact page and you can contact Twilah directly with this question. It's not something I know about directly. Thank you for asking, though! I'm sure others want to know as well.

    2. Hi, Amanda! I was able to get the answer to your question: Here is the gene and associated info: gs155
      CYP3A5 non-expressor This is common for Caucasians, but rare for African populations. As a CYP3A5 non-expressor you are unable to metabolize some common medications. This influences the synthesis of cholesterol, steroids and other lipids. The enzyme metabolizes drugs such as olanzapine, tacrolimus, nifedipine and cyclosporine as well as the steroid hormones testosterone, progesterone and androstenedione.

  3. Thank you for this. I am 26 and have been suffering from PMDD related symptoms for a very long time. In combination with my relatively unsafe childhood, it's been a ticking time bomb - ruining each of my relationships. It is horrible. Most of the time the episodes make me so depressed, I think about suicide.
    I am from the Netherlands. In Europe it had not gotten the attention it deserves yet.
    I just want to build a normal life. With someone who can accept I am horrible 3 days a month. My ex was a physician. She left me saying she couldn't handle it. I have given up on finding someone ever since. I hate the monster I become and knowing who I am otherwise, I can't in good conscience let anybody deal with this.
    I isolate myself. I am far away from family and friends... Scared to reach out because I don't want to bother them with this. But the loneliness in combination with the PMDD... It will kill me.

    1. Anonymous on 2-12-16, I hope you are seeking medical help. It took 3 doctors, 2 therapists, a series of "natural remedies," and trying 3 different medications for me, but I have finally found relief. I still have symptoms, but they are far more manageable than they were. I know how you feel, I know how deadly a condition this can be, but there is hope, and there is help. Do everything you can to help yourself. You are worth it! Go to napmdd.org. Their website is currently down, if it stays unavailable, try their facebook page. The most important thing you can do now is find a doctor who knows what pmdd is. Liana might be able to help find a doctor in your area too. It wouldn't hurt to ask.

  4. Thank you, thank you, thank you for writing get this blog. May your God bless you! Words fail me right now. I m heartbroken but thankful for reading this blog. I will post again, when I m in the right Mindset. PMDD is a living hell. To all the women out there reading this....get through today....tomorrow is a new day. You do matter! You are loved. You are worthy of a normal life. If you ve not already sought help....please do. 💐💗😘 To the husbands/partners of the victims (because that's what we are....we do not choose to be this way) of PMDD I am truly sorry.....firstly to my own husband, and that apology extends on behalf of all of us (living with PMDD) to all the spouses. Thank you for sticking by us. You truly are a wonderful human being. 👍👍👍

  5. So the complete hysterectomy, ovaries included, was truly a cure? I've looked into this a little in the past but from what I read having that done required going on synthetic/bioidentical hormones, which often becomes a balancing act nightmare in itself - and scares me to death since my aunt had cancer last year that was quite possibly brought on from years of synthetic hormones she started around menopause.

    *Ugh, I hope this question is even coming out clearly, as I am in the Really Bad Place right now.

  6. Your question is coming out clearly, Ruthie, and is a very good one. It is not one I can answer, though, because I have not had a hysterectomy, nor do I recommend them, and one of the reasons is the one you mention above. I will have to do a post one day about hysterectomies and PMDD. Re the private message you sent, no apologies necessary. You bring up a good and valid point. For more information on hysterectomies, read Hormones and Your Health, the green and white book I recommend in the sidebar of this blog, and/or go to a blog called Hystersisters http://www.hystersisters.com/blog/ I wish you all the best in making the decision that is right for YOU.