Reprieve: PMDD

YAZ update

A few weeks or so ago I decided to go off of the YAZ, wait until my body has a period again at its normal time, and then go back on but not continue using YAZ packs back to back.

I did this because I want to try taking YAZ and having a period. When I take it nonstop I don't have periods. Even though what comes before the period sucks without treatment, I like knowing where I am in my natural cycle. Taking the pill nonstop throws me off. YAZ has taken care of the PMDD/pre-period symptoms, so I'm hopeful that allowing myself periods won't be a problem.

I was, naturally, worried about going off, but hopeful that 4 months or so of nonstop pills would have some sort of carry-over benefit. And guess what? I think it has. I haven't had any PMDD problems. I feel like I'm about to start, and still, only minor, minor grumpiness. Nothing close to PMDD or even PMS. But after the period, it's back to YAZ pronto.

Anyone else trying YAZ?

Reaching for something else

Sometimes when I am not feeling well (all of the time when I am not feeling well) I lose myself. I forget that my life is not about illness. I forget that I am not only illness.

If I am honest, I also know that illness, no matter how much I loathe it, is also some kind of safe place. I know it well. I know my role as an ill person. I forget that I know other things too and that reaching for something different during the most difficult times is not impossible. I know because I've done it.

PMDD is HARD. It can push one down again and again. But it is during the worst of it that it is so important to reach for something else. A tiny, tiny piece of hope is HUGE in the middle of PMDD symptoms. It may look like nothing when well, but it might just get us through the day when we aren't. So this post is meant to encourage you to REACH for whatever hope (or anything else that is helpful) you can on a really bad day. Even if others without PMDD don't understand how difficult that may be for you, how much effort it takes to try, I do. Tell me about reaching if you like. I'd love to listen.

Coping as the partner (friend, family member) of a woman with PMDD

I have received two emails this week from two men who have partners that may have PMDD. I'd like to share a bit of one email I wrote in reply and a coping tool I used in the winter. It may be a good tool for partners as well. I welcome any ideas for coping from people who love women with PMDD. Mothers, fathers, sisters, friends, and partners. If I receive responses, I'm also going to start a new page for easy access to coping tips for those in relationships with women who have PMDD. And of course, helpful advice from those of you who have PMDD are much needed and welcome.

Tip One - Claiming something with mental illness doesn't feel very good.

For those of you with partners who resist seeking help:

There are several reasons why women may not want to say something is wrong. Quite a bit of stigma exists  within our society about mental health issues and womens' cycles have been the source of jokes for as long as I can remember. For me, it took some pretty extreme symptoms in my place of work and within my doctoral program before I began to take my own cycle as seriously as I needed to.

Tip Two - Getting the correct diagnosis is frustrating and uninformed professionals can feed self-doubt.

I had to go through a year long psych eval and three doctors before I found one who even knew what PMDD is and took it seriously. Doctors continue to argue about what PMDD is - a mental illness, a strictly physical illness, or both. Even within the medical community, it's hard to find people who know a lot about it. Also, psychiatrists may pass the problem and the woman dealing with it to primary care physicians and primary care physicians  pass it to the psychiatrists. I've had the BEST success with my GYN. She's young, smart, understands stigma, and is up on the latest issues for women.

Tip Three - the Good days (aka, the 14-ish days when PMDD symptoms aren't present)

Here is something you may want to keep in mind about the "good" days, meaning the two week time frame when PMDD symptoms aren't present. Please remember that this is my experience only. It is possible that your partner doesn't feel this way, but she might. Your partner (or friend, daughter, and so on) may resent the topic of PMDD or other difficult topics being brought up on a good day because good days are hard too. I know that many women spend their good days trying to process the damage the previous PMDD weeks created - trying to manage their egos, their guilt, and their shame. The last thing they want to think about, when they can finally breathe a little easier, is how they have hurt others, made mistakes, etc. For me, the good days were also spent trying to prepare myself for the next round of PMDD days, so I was always a little on edge (I am writing this in the past tense because I am currently PMDD-free). A good week is MUCH better than the PMDD weeks, but it's still a hard week. I bring this up because when the problems PMDD creates need to be addressed, obviously you will want to do that during the non-PMDD weeks. Just try to keep in mind that the person you love may still be struggling.

Tip Four- Liking/Loving her in spite of it all.

For those of you who are in relationships with women with PMDD, finding things to like about the person you care for may be difficult. It is easy to get caught up in the negative aspects PMDD brings. This is the same for the person who has PMDD multiplied by the guilt and shame she feels for putting others through PMDD symptoms and not feeling in control of her mood. Last winter, I kept a journal during the most difficult days in an effort to remember who I really am. I wrote down absolutely anything I could think of to boost my feelings of self-worth and to throw a little kindness my way. Here are some examples from my journal:

I gave J (my six year old) a kiss good-bye and a kiss hello.

I read to J from The Wizard of Oz.

I made good cupcakes.

I kept trying, all day long.

When I am well, these things are things I take for granted. I expect myself to do them and wouldn't think to write them down as acts of kindness and goodness, although they certainly are, PMDD or no PMDD. When I am ill, the effort it takes to do them is enormous. So I suggest that those of you without PMDD try keeping your own journals to help yourselves remember why you like/love the person with PMDD. If she makes an effort to be kind, write it down. If she kisses you or your child, write it down. I remember the act of simply reaching back to touch my son's knee on the way to school was so hard, but I wanted very much to connect with him as the mommy I am when I am well. On the really horrible days, this journal helped a lot. It was like a little bit of extra energy, a little bit of light, and keeping one for yourself might give you a boost as well. Further, if you, as a partner, feel like nobody understands how much of an effort you are making, keep a positive journal for yourself too. This is not meant to be a time consuming tool. I spent about 5-10 minutes each day keeping the journal. I wrote down short sentences like the one above.

If you find the day is really awful and you can't write down anything nice, I think that's okay. Try, but know that some days are just like that. I have a page in my journal that says "A (my husband) is selfish (underlined) at the bottom of a positive list. Then I go on a rant for three pages. It was the week before my period. You might have some similar pages the week before your partner's period too :-)

Tip Five - Get yourself some support.

You need support too. You can help yourself and your family by being informed and supported. There are a handful of PMDD sites to help you better understand PMDD. The ones I know of can be found in the left column of this site. Here is a link to a great forum in the UK:http://www.pms.org.uk/Forum/

The forum contains a section for those of you in relationships (for people with and without PMDD).

*Remember to send your ideas my way. You can email (wytewave@yahoo.com) them or post them here.

Update

It's been awhile hasn't it?

I'm good. I'm really really good. The YAZ continues to help in a significant way. After testing positive for gluten sensitivity I went off of it (gluten), which made me feel better in general  and reduced bloating! Who needs more bloating than PMS and PMDD bring?

I was off of gluten for quite awhile before I caved and ate a cinnamon raisin English muffin about one week ago. And then I ate another the next day. And one the next day. A handful of days ago I sent off an email to someone about gluten and PMDD and how my husband thinks it negatively influences my mood. I wasn't convinced until three days ago when I just flew off the handle in a very PMDD like fashion. You know, the moment when you are absolutely right and your mean voice is perfectly fine (except maybe somewhere in your mind you're sort of standing off to the side thinking What the hell?). In my case I had my fit and then went into the bedroom, cried, then thought What the hell, and decided to stop with the gluten.

After that happened I stopped eating gluten again and I have to tell you that the mood stabilized quickly. I just don't want to take the chance. I don't want to feel like PMDD makes me feel EVER. English muffins just aren't worth it.

Anyone else out there have any gluten and PMDD stories?

I was looking through my journal at the last entry (February) where I had been PMDD symptom free for two days and how two days made me feel so cautiously hopeful. But look! Three months now. I feel like I have my life back again. So try YAZ if you can and if you haven't. Let me know how it goes, and don't forget, it was rocky for me at first. It took a little time that first month for my mood to adjust. But oh my gosh it has been so very different from any other birth control pill I've ever been on.

Yaz - final thoughts for the month

Okay. I think it works. I'm going to call is a success. During the week before my period, I had about 2 1/2 horrible days that felt like classic PMDD, about two days of nothing, and then about two days of very, very light moodiness right before my body decided to have a period. I would say that instead of having about 14 days of PMDD symptoms, I had 2 1/2. That is a significant difference and I feel it - inside myself and within my relationships with my son and husband.

So, what hasn't worked. Anti-depressants (make me suicidal - can't take them), Yasmine (increased physical symptoms and didn't help as much with mood though it did help some. The physical symptoms weren't worth it though, at least for me. If you gave me no other choice, I would take Yasmine over nothing to help with mood, but quality of life would suffer because of the physical stuff). Um...therapy and only therapy? Didn't work, but did help to see a counselor with my husband while we were waiting for a diagnosis and treatment. Omega-3? This really does help with attention and ability to retain information but hasn't helped with mood. It's good for you though!

If anyone has any questions at all, please feel free to email me or post here.

Jennifer

closer and closer...

I am trying to be optimistic.

Two days of being a beast is better than 14, right?

It seems like the closer I get to my period (i.e. the very very worst days for symptoms) the less Yaz helps. In fact, if Yaz has been helping for the past two days, that's really scary. Because I am feeling the PMDD big time.

The Symptom of the Month is self bashing. I wish I could crawl right out of my head. The negative talk going on inside is just ridiculous.

It seems like each month there are one or two symptoms that are more prominent than the others. Anyone else experience this?

Sigh.

Cheerleaders welcome. I don't think I'll bite anyone's head off for trying to make me remember this is going to pass. Unless you look like my husband. Poor husband.

I'm going to answer the question from the second line.

Yes, two days of being a beast is absolutely better than 14.

I can't wait to start my freaking period.

reflections on yaz

I am on my third week of Yaz.

What I have noticed:

Like I experienced with Yasmin, I still have swollen breasts. And like with Yasmin, this happened after five-ish days into Yaz.

Unlike with Yasmin, I am not experiencing as much bloating and therefore can handle being touched by my significant other a bit more. That's a plus.

Unlike with Yasmin, I was able to adjust to Yaz much more quickly. I didn't experience as much mood fluctuation in the first week and things really evened out within one week instead of 3-4.

I am noticing that PMDD symptoms are here on schedule, but they are significantly lower in severity, and so, manageable. That is, I am feeling the fatigue, the short temper, the weepiness, the self-doubt, the bloating, cramping, and the fluctuation in insomnia and fatigue at night, but it is NOTHING compared to what it would be if I weren't taking the Yaz. I can keep most of the symptoms to myself and doing this isn't taking all of my energy. That makes an enormous difference in quality of life issues, particularly with my husband and son.

If things remain at this level, and I still get the usual two week reprieve per month, I will call Yaz a success.

*Still waiting for results on gluten sensitivity and will keep you posted if I decide to go gluten free and find this has an impact on my PMDD symptoms. I will also keep you posted if I find out I am not gluten sensitive but decide to pursue the cycle diet.

Treatment Update

Almost three months ago I began taking Yasmin (not the same as Yaz) to control two things: 1) endometriosis, and 2) PMDD. Because I needed to take it continuously to control the endo growth (i.e. I was to take it without any breaks - no periods were allowed), I had breakthrough bleeding for the first month. My doctor told me to let myself have a period then start again. I did. The second month was better  - no breakthrough bleeding. However, as I continued to take the Yasmin, my physical discomfort became worse. My breasts were constantly swollen and painful, bloating became the norm, and I basically felt like I was in "the day before your period" limbo everyday. I didn't want my partner to touch me, I didn't was anyone to touch me. That wasn't fun. I finally stopped taking it a week ago.

The upside of this trial was that it helped my mood. It took the edge off and gave my husband and I about two months to recover emotionally from the heavy mood fluctuation we'd been experiencing (I should include my six and a half year old in that recovery as well). I got to stop feeling guilty and we have built some trust back. Depression subsided. Naturally, I don't want to feel physically miserable daily but I also don't want to deal with the mental aspects either. Luckily I have a doctor who wants to find the best possible solution too. She doesn't expect me, at this point, to suffer in one way so I don't suffer in another. This morning, she hit me over the head with my file (gently) to emphasize this point, which made me smile. I like her, obviously :-) She cares and understands quality of life issues.

That said, it's on to Yaz. I guess the level of estrogen in Yaz is lower than the amount in Yasmin, so the hope is that the physical side effects won't be as difficult. If this doesn't work, it's down to the ring or an IUD.

I cannot take antidepressants, which I think I've mentioned before. If you are interested in why, or are considering taking antidepressants, please go here. Because I am running out of options, I have been looking into dietary changes. A very kind person directed me to the Cycle Diet site which is run by Debra Hope-Riedesel, a licensed registered dietitian. Out of a bit of desperation, I contacted Debra and paid for some consultations. She suggested I be tested for gluten sensitivity. Because of my family history (mom has intestinal problems, IBS...) and my own health issues (endo, IBS, PMDD) it makes sense for me to  see if this is a problem. I ran the idea by my OB today and she said what Debra, friends of friends, and websites say: If you are gluten sensitive and you eliminate gluten from your diet you will feel like a different person. It will make a big difference. So, I have started the testing process as well and will let you know how that goes.

My doctor also shared that she has a teenager who is gluten sensitive. Changes in her diet have led to decreased irritability.

I imagine that others have had ups and downs with treatment for PMDD. I know it helps me to hear these stories, get new ideas, and just know I'm not alone when treatment isn't going well (not that I would wish for treatment to go badly for any of you!). Please feel free to share your treatment experiences here.

Jennifer

What we claim

After many grueling days of pessimism I was ready for a different approach yesterday. In an effort to remember the things I do well, to focus on the good, I purchased a new journal and wrote down the moments I handled PMDD symptoms or moments when I was simply someone I liked. And there were a lot! On a really awful day! I know that there will be days when I am not going to believe I have an ounce of good in me, but I am going to try to open that journal and remember that it isn't true.

At my other site I posted a creative prompt you might find useful to consider. I mentioned the general idea here but what you'll read below has been expanded. I welcome responses :-)

An Activity

I had an idea two nights ago. If I were walking down the street and accidentally dropped my illness /PMDD the way I might drop a piece of paper, and someone called out "Excuse me! Is this yours?" I would like to be able to claim it. I might not necessarily like it, but I would want to claim it.

Yes, that is mine. Thank you.

But, yesterday it occurred to me that it isn't just the obviously difficult thing I need to be able to claim, it's the good, too.

If I were walking down the street and accidentally dropped my goodness, kindness, sweetness, loving heart, or hopeful spirit, I would like to be able to claim those too. But I don't! One, the illness leaves me feeling very very hard on myself and I don't believe I deserve to be acknowledged for the good. But also, before the illness, I had trouble acknowledging the good too. Others could see it. I could not bare to look.

I am looking now. I am circling the dropped object. I am checking it out. I am holding my breath. I am working on a reply.

What about you? What would you like to claim?

What are your thoughts and /or experiences with the following topics?

Once, when I was younger, I wrote myself out of depression and eating disorders. I am attempting to do the same with PMDD.

It seems to me that there are lessons here, and choices, even though it often feels like the worst part of PMDD is feeling like there is no control or choice. I am curious about  several topics and would like to hear from others on these topics too. Another difficult thing about PMDD is a feeling of loneliness and lack of understanding. I am reaching out to you and welcome a reaching back.

Topics

Identity - PMDD makes me feel as though I am switching identities often. Kind and mean. Happy and very depressed. Hopeful and full of hopelessness. It also forces me to give up the identity of healthy person. Lately, I have noticed that trying to ignore PMDD as a part of who I am is making me feel inauthentic. My wish is that if I were to drop PMDD on the sidewalk, the way I might accidentally drop a piece of paper or some money, and someone saw and said, "Excuse me, is this yours?" I would claim it. I might not like it or enjoy it but I would claim it. How do I move toward that place?

Gender - Oh I am angry. I am so, so angry. This is the first year of my life when I wished I were a male. It was only once, but still, the wish was there. I realize that I have been dealing with gender issues all of my life, but this one feels particularly difficult. There has always been a lack of respect or acknowledgment of the female cycle in my life. Jokes made about PMS, the idea that I should simply be able to suck it up and be nice when being nice is very much outside of my control. The expectation to go about my life performing as if I were not experiencing severe pain and mood difficulties. I am female. I should not make noise. Ignore me. Ignore an illness that is specific to my gender.

Disability - This is, for me, a disability. According to the ADA (Americans with Disabilities Act), I meet the requirements of having a disability. I am a doctoral student studying disability but the woman experiencing it is having trouble. I do not like this word, I do not like having to come to terms with it, I do not like having to accept it and yet, not accepting it poses other problems. I don't want to downplay or deny what it is to have a disability either. As I said before about wanting to be able to claim something, I would like to be able to claim this term as well.

Motherhood - Having a child has made me a better graduate student. It has pushed me to pursue my dreams. It has expanded my dreams. It keeps me going when I may have stopped trying as a person without a child. And at the same time, PMDD is devastating to my idea of what a good and kind mother is - to what I was before the PMDD. It is breaking my heart. It is breaking me down.

A chipping away of goodness - Who wants to be mean? How do we make meaning out of PMDD? How do we resist the wearing down of our sense of being good and valuable human beings? I am struggling with this.

A Lack of Support - How many of you have reached out to friends and family to try and explain or promote understanding about PMDD and been totally ignored? Or rather, how many of you have found that the topic of PMDD is ignored? This also creates problems with identity. If a part of who you are is denied, this creates a feeling of loneliness, the belief that you are not valued or understood, the feeling that you shouldn't talk about something that is significant, a feeling that you should just shut up and not make a mess. It may not be what friends and family feel. They may not know what to say. But I can state that not saying anything is equivalent to telling me you don't care, and that  hurts.

What are your thoughts and feelings?