PMDD - After the Hysterectomy

In my first post, I shared what it was like for us in the trenches with PMDD.  This installment, I want to discuss what happened after my wife's hysterectomy, or how we finally got to life without PMDD.

The decision, I remember, was discussed a handful of times regarding whether my partner should have a hysterectomy. I remember us doing a lot of due diligence on the topic, mostly surrounded around her health. We knew we were at peace with the idea that we would no longer be able to have children—we already had two beautiful, healthy kids and we were truly blessed. The larger conversations centered around "then what?" What are the guarantees? What are the potential complications? What if the surgery doesn't work and what would the domino effect be, knowing she just had her entire reproductive house torn down and she still had PMDD?!

The decision was ultimately hers. She decided it was worth the risk of everything we had discussed, knowing the reward would mean so much more.

She had her surgery. It went well and we were told there would be no major side effects, just 6-8 weeks or physical recovery time. All good, right?

Let's harken back to PMDD and how most of us, even doctors, are learning on the fly. I obviously wasn't prepared for the three months after surgery and how PMDD kept creeping into our lives. It wouldn't go down without a kick in the gut, a roundhouse right to the head, and headlock for good measure. One of the hardest battles lied ahead and I was not any wiser to what the hell it was—again my preparation—or lack of it—didn't matter.

My wife fought for three months after her surgery. It was probably just as hard as when she had PMDD. I remember the emotional strain it took on her—how her body would never be the same. How the same place that had housed our children for almost 10 months was gone. It was an emotional rollercoaster. The fights still existed, the threats of divorce were still present, and it seemed at times as if one of my fears had come true—IT DIDN'T WORK!

As each day went by I was looking for a ray of hope. After she was fully recovered physically (try more like 3 months, not 6-8 weeks) some normalcy started to happen and it felt odd. We were always waiting for the next fight to happen. I was always tracking her episodes on my iPhone, trying to prepare for the next hostile takeover. We went back and forth at times really questioning if the surgery worked 100%.

It was a long road back emotionally for my wife post-surgery. It was harder, and took longer than any of us expected. PMDD gave us one last fight and didn't go down quietly...why should I have expected it to?

For whoever reads this, I leave you with this: It can and will get better. There are options for you and your partner. You don't have to live this way any longer. I know it is easier to run like hell than to stand and fight. I chose to stand and fight when at times I wanted to run far, far away.

I leave you with three points to help get you through it all:

1) Remember why you fell in love with her. It will carry you at times through the muck even though the woman you fell in love with might be a shadow of herself during PMDD.

2) It's okay to feel the way you do, no matter how much you might feel guilty for feeling a certain way. Things will cross your mind during her PMDD episodes that will have you questioning your sanity. You will feel like snapping at times. You will feel like doing irrational things just in the hopes that your wrong behaviors or attitudes are not so much payback for PMDD, but a pathway between staying balanced and losing your mind.

Talk about the way you feel with others even if they might not fully understand it. Just letting it go and letting out a good cry is also therapeutic. Don't hold it in. Find an outlet for yourself too. Your health still matters.

3) Lastly...Don't give up. She needs you still. She is fighting a swarm of demons that she doesn't want around. She doesn't want this any more than you do. [Whichever treatment option(s) you choose] Work towards achieving healthy solutions for both of you. There are solutions out there. Do your homework, reach out to PMDD survivors and their peers, and never, ever give up Hope.

You are stronger than you ever realized, partner, and God wouldn't give you anything you couldn't handle. Call it cliché but it's true. You were built for this for now, but it is not yours or hers to live with forever.

Liana's note: For more information on the basics of PMDD, please read my posts Dealing with PMDD - Advice for Men, and Confusion City.   Also worth reading are Top 20 Tips for Dealing with PMDD, and More Tips for Men Whose Partners Have PMDD.  All four posts are included in my book PMDD: A Handbook for Partners.  For those who prefer to have all this information (and much more!) in one convenient place, it's the book with the blue cover at the top of the sidebar. 

PMDD - When Women Who Don't Have it Do Harm to Those Who Do

April is PMDD Awareness Month.  Last week, I presented a Quote of the Week from a psychiatrist in South Africa who does indeed understand what PMDD is about and the need to treat it.  This week we present the flip side of the coin--the side most of us are unfortunately all too familiar with--in the form of a guest post by fellow blogger Twilah, written in response to a TED Talk in which a woman psychologist proceeds to negate the validity of PMDD by, among other things, dismissing PMDD and its sister disorder PMS as a cultural myth.

Twilah: This TED talk came to my attention because it was posted on a PMDD forum online. Other women complained that the talk seemed invalidating and dismissive of the illness they live with. I tend to agree with the feedback of the women affected by PMDD. This is my analysis.

The speaker, Robyn Stein DeLuca, opens by gauging the audience’s familiarity with the concept of PMS. She establishes that PMS is a familiar concept with easily recognizable symptoms. She goes on to point out that mainstream American media accepts and propagates ideas and assumptions about PMS.

DeLuca then drops her bombshell that after five decades of research the jury is still out on PMS. It’s poorly defined, treatment protocols vary… it may not even be real! She explains how historically the symptoms of the disorder described by psychologists varied so greatly that the very definition of PMS became meaningless! 

She goes on to outline the shabby research techniques and protocols that characterized the presumably five decades of research she referred to earlier. She claims that the DSM “…in 1994…redefined PMS as PMDD, Premenstrual Dysphoric Disorder.”

Actually the DSM didn’t distinctly include PMDD until DSM 5, which was released in 2013. Prior to that, the DSM 4 included PMDD not as a distinct mental illness, but as a “depressive disorder not otherwise specified.” The speaker heralds the clarity established by the diagnostic guidelines offered in DSM 5. She then points out that under the new criteria in DSM 5 the number of women affected by PMDD turns out to be only 3-8%, which she considers “not even a lot of women.”

So DeLuca opens with a claim that five decades of research hasn’t supported the premise that PMS exists. Then she points out how poorly conducted much of that research was. 

Okay…you are using five decades of research that by your own reports doesn’t count for anything to support your premise that PMS is a dangerous and erroneous cultural creation? It’s generally a bad idea to use volumes of poorly conducted research as support for anything. And a mere 3-8% of presumably the world’s female population is affected? If women are slightly less than 50% of the estimated 7 billion humans on this planet, and about 2 billion of these women are menstruating, then 3% of menstruating women translates to roughly 60 million women with PMS/PMDD…whichever she is calling it right now…because she wants to undermine a PMDD diagnosis by conflating it with a cultural concept of PMS!  (Liana speaks up:  I want to say here that PMS and PMDD should never, ever be used interchangeably, as they are two separate conditions, and while PMDD affects 3-8% of menstruating women, PMS is said to affect approximately 80% of menstruating women. That means this woman, aside and apart from the huge disservice she is doing to women who do have PMDD, is also dismissing the monthly experiences of possibly another 1.6 billion women and calling it "good news".) 

Head spins…

She goes on to posit that, “the PMS myth” persists because of cultural limitations on the role of women.

Now I won’t argue for a minute that many cultures, especially the American one to which she is primarily referring, frequently limit the roles of women. Popular conceptions of PMS have been used by sexist people to minimize women’s speech and self-advocacy. That is undeniable. But the irrational interpretations of a sexist culture have zero bearing on whether a medical condition is real. Many well established medical conditions are stigmatized and used to oppress individuals affected by the conditions. Think of any disease that might cause a person to wear a colostomy bag, think leprosy, think any one of legions of mental illnesses. Simply because a culture uses a diagnosis to oppress a person with the diagnosis does not mean there is no validity to the diagnosis. The cultural interpretation of the illness needs to be addressed, the disease doesn’t need to be denied. 

DeLuca’s assertion that PMS is a largely Western concept is irrelevant also (Liana: as well as totally untrue). Lots of women’s health issues are more marginalized in non-Western societies. That has no bearing on their realness or validity. If society at large and physicians in particular choose not to discuss the high infant mortality rate in any country that doesn’t hold women in high regard, that doesn’t mean high infant mortality doesn’t exist in that country. That means it isn’t talked about or researched in that country.

To say that diagnosis and treatment of PMS or PMDD is anti-feminist is more hurtful to 60 million women than much run of the mill sexism. To have other women, who we would hope are our allies, take a stand to deny us diagnosis and treatment for a life threatening condition is morally reprehensible. 

Because that’s what PMDD is. It is a life threatening condition. The 3-8% of women who are affected by this disease experience job loss, relationship difficulties, relationship loss, depression, and potentially suicide. And this woman thinks it is helpful to stand up in a forum like a TED talk and tell people that it’s really no big deal that over 60 million human beings deal with this disease every month? To suggest it is a cultural problem and not a medical problem? She criticizes what she calls “the medicalization of women’s reproductive health.” I criticize the politicization of a medical disorder. I criticize speech that discourages further well conducted research into a life threatening illness.  (Liana:  Up to 30% of women with PMDD regularly experience suicidal ideation or attempt suicide.  15%  those succeed.) 

The root of the problem is not a cultural misperception about PMS. The root of the problem is that an endocrinological disorder is being treated as a mental illness. The problem is that the hormonal health of women is being handed to psychologists and psychiatrists for treatment. Imagine going to a psychiatrist for your diabetes or your hypothyroidism. What do you think the outcome would be? What do you think the data would show? Imagine a man being told to go to therapy instead of being given testosterone supplementation for age related testosterone production changes.  (Liana:  I half agree, but also disagree.  If psychiatrists and psychologists are the only medical professionals attempting to take PMDD on, then I would gladly go to them over accepting no medical help at all.  But I do believe PMDD is more an endocrinological disorder than a mental one.)

DeLuca says that, “…the success of medication in treating PMS symptoms vary from woman to woman.” She uses that as evidence to support the invalidity of a PMS diagnosis. Of course the success rate of using psychiatric drugs to treat a hormonal disorder would have varying rates of success! Considering the efficacy of antidepressants to treat depression is disputed, with estimates ranging all over the place, it’s not surprise the efficacy is unpredictable when you prescribe a psychiatric drug for an endocrine condition. I’m sure you’d find the same kind of inconsistency if you prescribed Prozac for erectile dysfunction. A man just might get an erection because increased serotonin made him happier overall. (Liana:  If the medication doesn't work, that does not mean the condition is not real.  It means the medical options provided are not addressing the medical issue.)

But wait, we’re talking about women.

This presentation is so off base. The problem isn’t that a make believe, culturally based illness is being given credence. The problem is that a hormonally based illness is being investigated by mental health professionals, simply because one aspect of its presentation is similar to recognized mental illnesses. The problem that American society uses the term PMS to dismiss or demean women’s emotional states is a completely separate issue from research and treatment of a disease that may affect more than 60 million women. The problem is that an educated women would stand up in front of an audience of thousands and undermine the health concerns of millions of fellow women.

Let’s not back away from helping women because existing research is incomplete or inconclusive. Let’s fund more and better studies. Let’s take seriously the complaints of millions of women that their health is being affected by their hormones. Let’s listen to women’s voices instead of dismissing them. 

Twilah's blog can be found here.  

PMDD and Holiday Stress

Offhand, I can think of four good sources of holiday stress: family, food, finances, and expectations.  Each causes its own manner of stress, but like a toxic family with a volatile history, they all intertwine.  For example: Your family has expectations that involve your finances, either via hosting a food-laden event, traveling to a food-laden event, or simply exchanging gifts. 

Funny, but our current culture would have us believe that the more we spend, the more we care.

Is that messed up or what?  Then, of course, there are the guilt purchases.  You know, the sometimes extravagant but almost always expensive gifts you buy to convince someone how much you care when you won't be showing up in person.  Or maybe you will be there, but you'll have to leave early, or it's the only time you've seen this person since whenever, and you feel guilty about that.  Then there's the keeping-up-with-everyone-else spending. Your gift can't possibly come in at a dollar value less that the gifts "the others" are giving, or you'll look bad.  So you either buy something you can't afford, or pony up your share of a gift you didn't choose and can't afford. 

But I digress.  Above are only a few examples of generic holiday stressors.  A PMDD woman doesn't handle stress well to start with, and so when the holiday madness begins....

You can understand why all she wants is for it to be over, or at the very least, to get through it without a meltdown.

So let's stop for a minute, just stop and think.  What are all these holiday gatherings supposed to be about?  Connecting, making memories to hold you through until you see each other again, right? (Or, if you're all local, celebrating another year of life's ups and downs together.) 

But somewhere along the way, everything shifted.  Away from Jesus and family, peace and goodwill, and toward fueling a selling season that accounts for 40% of the year's retail revenue. 

Connecting more deeply with friends and family is not about two months plus of frenzied shopping to see who comes up with the biggest, best, shiniest gift.  It's about coming to the table well-rested and healthy, comfortable and caring.  It's about making eye contact (put those electronics away!!), feeling genuinely happy to see each other, and connecting in a special way...but not a deep and forever-bonding kind of way.  If you come to the party expecting that, you've fallen into the trap of unrealistic expectations, and you'll only be disappointed. 

Holiday gatherings are for having lighthearted fun and making good, positive memories.  If a heart to heart connection happens, consider it a bonus.  But don't go into the event expecting anything more than a good time.

Happy holiday gatherings are about spending time with people who share common interests, values, and beliefs.  And if that doesn't happen—which is most of the time—it's about managing to enjoy the day and company as best as you can.  In a worst case scenario, it's about keeping the peace (and your peace) for as long as you and these spiritual, mental, and emotional strangers spend time together.

Not everyone is blessed enough to have a group to gather with.  If you are, but can't stand to be around them, and absolutely, positively can not escape attending the festivities, the prevailing advice is to limit your visits to a couple of hours at a time.  If you've traveled long distance, take breaks to visit friends in the area, or maybe revisit familiar local haunts, or even show your partner or kids where you grew up.  If you don't want to do that, or don't know anyone else in town, maybe you can visit some sort of tourist attraction in the area for a break between bouts with relatives.  Or you can offer to be the gofer who runs errands.  Somebody always needs something they forgot to bring at these things.  Offer to fetch it, and use the time to regroup.  If you're not from the area, just take a walk or a drive to explore the surroundings and clear your head.  What is it with people acting as if there's something wrong with wanting to spend more than a few minutes alone?  Could it be they envy your independence? Wish they could break away from the herd as well?  Think about it.

If you have no relatives nearby, find some friends and start your own traditions. Traditions are important, but creating new traditions can be equally important.  Families no longer look the same as they did in the past--we've got single moms and dads, same sex moms and dads, bi-racial couples and children, adopted children, foster children, blended families, events where all parties and their current significant other show up, presumably for the sake of the kids—so why should family events always be the same?  Consider incorporating something new into the mix.  Maybe you can all go to church together, or to a restaurant for dinner, or to a movie or bowling after your meal.  Mix up the traditional menu but try adding something new.  Maybe even ditch the whole thing and have a theme party.

Or maybe you can agree to go to the big family shindig only every other year, or only participate on alternate holidays.  Spend one any way you want to, (whether it be by staying home or planning a ski chalet weekend) and the next by attending a family gathering.  Or schedule the family event at a different time than the true holiday.  Think of all the stress you'll avoid, not scrambling out there with all the other holiday travelers. 

But don't go at all if you know the event will only bring more pain and destruction to yourself and the family.  Family gathering time is not the time to resolve family issues, conflicts, or make major family decisions.  The discussion about your cousin's financial woes or addiction or whether or how to move someone into assisted living is NOT one you want to have at a holiday gathering.  Ditto details about selling, renting, or discarding family property.  True, it may be the only time you are all together, but the holiday celebration itself is NOT the forum for such undertakings.  Those require a separate family meeting.

Just as the holidays are stressful for all of us, most of these suggestions could apply to anyone.  To specifically address your PMDD, I'd have to return to the line of "coming to the table well-rested and healthy, comfortable and caring."  If you are feeling none of these things on the date of the event, then you are not wrong in wanting to cancel, and if you do, please do not feel guilty or accept any blame for doing so.  Would you stay home if you had the flu?  Negative moods are just as contagious and can ruin a party just as easily.

Feeling guilt and accepting blame only escalate your PMDD symptoms.  By staying away from the event, you are protecting both the event and taking care of yourself.  Nothing in this world is more important than seeing to your own health and well-being.  Especially when it comes to your mental health.

Because if you don't care enough about yourself to take care of you, believe me, nobody else will either.

Liana Laverentz is the award-winning author of two books on PMDD, PMDD and Relationships, and PMDD: A Handbook for Partners.  Both books are based on the most asked questions by her readers, and therefore the most popular posts on this blog. Both books are also an excellent resource for understanding your PMDD and for starting a meaningful conversation with loved ones who want to know more about this debilitating disorder we live with daily. Both are available in ebook from Amazon and Smashwords (Kobo, ibooks, Nook, and Overdrive), and in print from Amazon, and the International Association for Premenstrual Disorders, or IAPMD.  For more information, please check out Liana's Facebook Page, Living with PMDD.