Hello! It’s Not Just PMS. PMS and PMDD Are Not the Same Thing

Let's set the record straight once and for all, shall we? PMS and PMDD are not the same thing.

I remember PMS. I had it as a very young girl and woman. It was signified by the typical energy drop, irritability, cravings, weepiness, bloating and leaden legs that preceded my period. It was a pain in the...well, you know. It made it a challenge to go about life as usual, but I managed, because PMS is manageable. At least, it was for me. I have a huge pain tolerance!

At some point in my life, something switched on...or maybe off. Either way, PMS started to transform into something a lot less friendly. I was markedly becoming an entirely different person for several days before my period, changing back again as soon as the blood flowed. This wasn't about bloating and irritability. This was about marked personality changes characterized by extreme sensitivity to stimulus and anger. Simply put, I couldn't stand to be around people, and I couldn't handle the simplest of frustrations.

Enter peri-menopause. Now at age 48, PMDD has become an even bigger nightmare. With the shifting of my hormones comes a much more unpredictable barrage of cyclic symptoms including anxiety, rapid mood swings, rumination and self-sabotage the likes of which even years of extreme personal development can't help me tackle. Add to the mix suicidal fantasy, full-on rage, and an aversion to my partner with its characteristic withdrawal and silence that is completely destructive. Marked personality changes have become unrecognizable personality! Day-long crying jags have replaced weepiness. And bloating and cramping have morphed into days of constipation, muscle aches, headaches, and other inexplicable weirdness including strings of 12 hour naps! This ain't PMS, folks!

I wonder how many of my well-meaning associates who say they have or had PMDD really know what they are talking about. Did they have those simple cramps, bloating, and mood changes I recall from my youth? Do they think that is PMDD? Do they understand that PMDD is a life-altering, destructive, and altogether demonic monthly possession which leaves one feeling completely effed-up? I have to wonder. Because often, something in the way they say it or look at me or how they live their lives makes me think they don't. The dead give-away is of course, "It went away with exercise and dietary changes" or "You just have to think more positively".

These two female "things," PMS and PMDD, are often lumped together. There is no harm in that, necessarily. The problem arises when everything that is generally known about PMS is transferred to PMDD and an assumption is made that they are in fact the same thing or so closely associated as to be kissing cousins. In actuality, they are entirely different races. And speaking of races, it's a lot easier to run the PMS race, let me tell you. The PMDD race? Honey, it's a never-ending marathon of trials over which a woman has very little control, no matter the extent of her efforts.

Are you suffering from PMS or PMDD? Learning the difference can make a world of difference in understanding yourself and your symptoms. For more information, visit the National Association for PMDD/Gia Allemand Foundation website. 

Liana's note:  The above guest post was written by the blogger Cheekyminx. With her permission, several posts she has written about PMDD will be featured on this blog in the months to come. In the meantime, to find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

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. 

Readers Speak Out: Advice for Partners of Women with PMDD

Today I uncovered another gem of wisdom from a reader on how to approach your partner's PMDD.  Rather than leaving it buried in the comments section of another post, I've decided to feature it here:

I just found this blog searching for something to help my husband know what to do with me. I feel better now, but I fear I'll regress and we'll struggle again as a family. I have PMDD. I say DO NOT bring it up when she is at her worst. She is completely irrational and doesn't want to answer stupid questions or talk about how she is feeling. [In that moment] it seems so obvious to her that you should know how she is doing. Don't bring it up on a date or otherwise special time between you two. It is better to ruin a good day or week to get her help, than to keep living like how you are and end up divorced.

First, you need to get your wife medical help. When you have an opportunity to talk—not in public—ask her if she's ever had PMS. She may not have realized her moods are associated with her cycle. You're either going to get a "Yes, dumb***" answer or a "No, not really, I don't think so."

Depending on how that goes, tell her you've done some research, you think her moods might be associated to her cycle, or, if she knows she has PMS, that it might be something more serious. Tell her about PMDD. Read her the symptoms. Ask her if this is how she feels sometimes. Feel bad for her, say you're sorry she has to endure that every month. Let her know there is help available.

I know it sounds insane. I know you shouldn't have to put up with it. I also know how well I'm doing now and wonder how much better last year could have been for my marriage if my husband would have reacted to me differently. If he could have said, "How are you doing? Not well? Let's get you to the doctor," instead of "You're so mean and I don’t have to put up with this." I think I would have felt better. I was already on an antidepressant. It wasn't working.

What I need to feel better is a new prescription and a husband who will back off when I'm irritable and take care of the kids. When I have a bad day, I need him to think, "She's mad, hmm, let's look at the calendar, yep, she's pre-menstrual, I'm going to leave her alone, not mention PMS, and take care of the kids until she feels better."

It might be a few hours, it might be a few days, but it won't be a few weeks like it was last year when he was mad at me for having a bad day; then I felt worse, then there was a fear he'd leave me. I get it, I wanted to leave me, too, but women with PMDD, I'll speak for myself at least, need to feel wanted and loved and worth it to help.

So that is my advice, stranger. Ruin a good day to get her the medical help she needs. Say, "I took next Thursday off work, would you like me to take you to the doctor?" If you have kids, arrange babysitting. It's so hard for moms to find an hour to go to the doctor, especially if she doesn't feel she's worth helping. Even if it's not PMDD she has, make sure she gets bloodwork done. They should be testing her thyroid to make sure there aren't issues there.

Either way, good luck, and from the wife's perspective, thank you husbands who stick it out and deal with us. Some of these marriages seem beyond repair, but husbands can do so much to help. Think of how she is doing and what you can do to help, even if that means just leaving her alone for a bit. She’s not rejecting you. She feels like s***. Unless she comes to you, your touch will be repulsive. It’s not personal, it’s just how she feels. Know that she cannot help how she feels when she is pre-menstrual. For me, I feel angry, tired, sad, and irritable so I am distant to try to protect the ones I love most (from me).

Perhaps your wife [doesn't] care so much if she is mean, but I care. I bet deep down she cares too because she loved you enough to marry you and doesn’t want to be mean to you. You don't have to understand it, you won't ever. You just have to love her through it. Hopefully she's worth it to you.