PMDD and the Body as an Ally

            This morning I read the words: If I created my week with my body as my ally, taking into consideration its needs, I might… (Jennifer Louden’s book The Life Organizer).  Being in a place where I view my body as my ally and not my enemy has taken me years to experience. Illness has highlighted a sense of my body as enemy, and illness has brought me to feeling my body is my ally. It has not been an easy path to this position and arriving here has been fairly recent.

            In January of 2009, after treatments for PMDD and endometriosis were no longer working and I had exhausted medical treatments I was willing to try, I was given the choice to have a total hysterectomy with bilateral salpingoopherectomy (TAH-BSO). This meant that every reproductive organ would be removed. Having dealt with the chronic pain that both endo and PMDD produced, the mental symptoms of PMDD, and the emotional toll that everything had taken on me and my family, I chose to go through with surgery.

            Making this choice and moving through the emotions that came with it prior to surgery brought  gratefulness for my body that I had seldom been able to feel before. As I took long walks during winter and allowed myself to mourn the pieces of my body I would soon be losing, I began to feel connected to it in a more complete way. I felt empathy and was able to acknowledge the gifts it had given me. These gifts included the things I took for granted, like a heartbeat and breathing, but also many years of good reproductive health, a pregnancy and child.  It took preparing for a hysterectomy and loss to stop being angry and bewildered by my body – a body I had previously viewed as almost deceiving me, as being something I could not trust.  I found myself trying to understand its perspective. I spoke with my body as I walked – You’ve worked so hard for me. You do so much just to keep me alive daily. And you’ve given me a wonderful history (periods, a sense of belonging in being female, pregnancy). But something has gone very wrong, and these once wonderful parts are harming me more than they’re helping me.

            I wish I could have experienced this before I reached the point of having a hysterectomy, because I think it could have helped me a great deal when I was dealing with endometriosis and PMDD. Before surgery, my fear and anxiety about what happened to me every two weeks  seemed to take a terrible problem and amplify it if not physically (but perhaps), absolutely on an emotional level. Instead of turning to my body and taking time to be grateful for the abundant ways it supported me and allowed me to be in the world, I braced myself for pain and emotional and mental turmoil. I buckled down with fear and worry and felt overwhelmed and out of control. I blamed my body for everything.

            How would I have thought about my situation if I had seen my body as my ally and not my enemy? How would I have prepared if I had seen my body as something going through what I felt emotionally, like a sick friend, a sick relative, someone who had been there for me in numerous ways and was there for me but had become ill? It wouldn’t have fixed everything or eliminated the symptoms, but I have to believe it would have helped. It would have been an enormous shift in attitude, one worth attempting to take. I say this because I continue to deal with chronic health conditions and have seen myself handling them with more energy and peace and much less fear since viewing my body as an ally. Life with chronic illness isn’t perfect, but I have found that there are ways to make it a little easier and to learn from the experiences as well.

            I remember a post on Jen Gray’s site where she and her partner wore pink hats that said Fuck Cancer. It made me feel a sense of strength and of not being alone. I did not have cancer, but I did feel incredibly alone in my pain, fear, and symptoms. What if I could have put on the pink hat and imagined my body doing the same, substituting the word cancer for my own conditions? What I know now is that whatever was wrong then and what I deal with now, we were and are in it together.

* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.

PMDD Hope – Support for Women with PMDD & Significant Others…

I am happy to announce that my new site is now open. I am now 100% finished with the design portion of PMDDHope and invite you to stop by. I am excited to have a blog again (I will continue to post here as well) and to be able to offer assistance to women and significant others. I know that women need the support and understanding of significant others. From experience, I also know that it is sometimes more helpful to have another person there to explain, answer questions, and assist in moving in a more positive direction when dealing with PMDD or any chronic health condition (vs. only the person who has PMDD).

To give you an idea about what I have been working on, here is a bit from my site:

Are you searching for support and understanding for PMDD? Are you wondering if guidance and counseling can help you…

Live your best life in spite of having a chronic illness?
Develop the quality of life you want and deserve?
Manage your health condition in an employment setting?
Attend a university with the support you need?
Decrease tension and misunderstandings about PMDD between you and your significant other, family, and friends?
Create effective strategies to assist you and your loved ones in living with PMDD?
Decrease blame and increase understanding regarding PMDD?
Identify and speak with health care providers regarding PMDD?

I am offering free, initial 20 minute consultations – services are confidential and offered via phone. Feel free to contact me with questions or to schedule an appointment.

I am very excited about the site and look forward to offering help for PMDD. This is a new chapter in my life and I am so glad to be here with you!

Jennifer

* I am a PMDD Advocate and CRC offering supportive services for women with PMDD and their spouses/partners. Please contact me with questions about services or to schedule a free, initial 20 minute consultation. You can also visit me here.

on the bottom of the ocean

One day, after I was trying to recover from almost killing myself  (remember how I said I can’t take anti-depressants because they make me suicidal?), I sat in a counselor’s office listening to him talk about waves. He said that when we are fighting against ourselves or something we don’t like, we can imagine ourselves being caught in a wave and trying to somehow control it.

At the time, my particular wave included trying to resist or gain control over lots of somethings I didn’t like. I was mad at myself for listening to a psychiatrist instead of myself. I was mad that my psychiatrist hadn’t listened to me (um, I think the meds are making my PMS worse & that my moods seem to be connected to my periods), and that this lack of listening had contributed to me almost dying. I was mad about trying another med when in my gut I knew I was having a bad reaction to meds. In the case of the horrible August day, I had found myself packing every medication I had for an overdose. I had gotten to the point of planning to commit suicide during the week before my period was about to start while I was simultaneously being told to increase a new med – Effexor. I was feeling really guilty about wanting to kill myself months ago when I had a little boy to think about (I did manage to drive myself to the university counseling center instead of going through with it). I was new to PMDD. I was angry. I felt so very, very out of control.

My wave felt huge.

The counselor began to describe the anatomy of a wave and suggested that when I felt like struggling, I try remembering that a wave cannot last. It has a beginning and an end. He suggested that I might want to imagine hanging out in the trough, the bottom of the wave, instead of trying to stop  it.  I pictured myself in this scooped out portion of everything I was trying to fix and it made me feel better. What if I cut myself some slack and just let it be what it was without trying to take action, knowing that it couldn’t last? Sure, I could try some coping strategies or counseling, but could I really expect myself to fix so many enormous and complicated emotions and events, to undo things that couldn’t be undone? Well I could. I did. But that wasn’t working very well.

I spoke with my mom about the idea of lying in the trough. She said when she was a little girl she swam out too far and was caught up in the tide. She recalled struggling and then allowing herself to simply roll on the bottom of the ocean. Before very long, she found herself rolled right onto the beach, safe again.

Tell me about your wave.

Tell me about what it feels like to lie in the trough.

 

 

permission

* Please know that everything I write at Life w/PMDD applies to my life and my opinions. My experiences and choices may be similar to those of other women with PMDD, but I can’t speak on behalf of anyone other than myself. I do think that the sharing of individual stories creates a bigger story about what it is like to be a woman with PMDD and that this coming together is valuable and very much needed. I am honored to be a part of it.

I have noticed that I have resisted going into detail about what life with PMDD and endo were like in December of 2008. A part of me has not wanted to offer the full story because I don’t want to feel that I have to justify having a hysterectomy. But obviously, I feel like I have to justify having a hysterectomy, at least on some level. So I have decided to stop ignoring that feeling, look at the details, and let go of this need for justification (if any of you are feeling or have felt this way I would love to hear your thoughts).

In December of 2008, I was taking 800 milligrams of Ibuprofen around the clock for endometriosis pain. It wasn’t working. It had stopped working a long time ago. I think I continued to take it because I didn’t know what else to do. As the pain progressed into January, I took some leftover Tylenol 3 (Tylenol with codeine). That made me itch and did nothing for the pain. Then, my doctor wrote me a prescription for a small amount of Vicodin. That also did nothing. There were other pain meds I either couldn’t tolerate or that didn’t work. I had nothing else to try in the pain med department.  This is when I began to become afraid. My endo pain was in my lower back and abdomen by then. My periods, always regular, had become longer and heavier. The pain, which often began at mid-cycle and ended after a period, wasn’t going away after a period and I was having multiple periods with two week breaks between. I was on Christmas break. At that time, I was a grad student, so my break was quite long. If I had been employed in a regular job at that time, I most likely would have been fired as it would not have been possible for me to work.

I spent the morning waking up with pain, took multiple hot baths during the day, and went to bed in pain. I was a bitch because I hurt. Everything on the outside of that pain became difficult to think about. A small child to care for? I went through the motions, but my energy was on simply trying to make it through – not to savor or be fully involved with Jacob. He sensed that. My relationship? My husband was kind but major and minor intimacy were non-existent. I didn’t want to be touched.

I had been taking YAZ (birth control pill advertised as being proven effective for PMDD) for about eight months and it had been amazing. It really and truly gave me back a lot of my life. But, I was also required to use it as treatment for the endo. What this meant was I had to take it non-stop with no breaks for periods (periods made endo and PMDD worse). In theory, this seemed like a good idea. I will never know if YAZ would have lasted longer or been as effective as it was if I hadn’t taken it continuously. In the end, around December, I began to have break through bleeding. My body wanted to have a period and YAZ couldn’t stop it. I also began to see little glimpses of PMDD (anxiety, anger). YAZ had been my last treatment plan for PMDD. I had horrible reactions to other birth control pills. Anti-depressants made me suicidal and seemed to make PMDD symptoms worse. A  gluten free diet wasn’t working.  I was afraid to have hormonal injections for endo (or PMDD) in case they made the PMDD worse. I felt like I was standing at the edge of a cliff, literally. I felt so trapped. So defeated. So tired.

Right before I began taking YAZ, my PMDD had gotten very scary. Sometimes I felt paranoid. Sometimes I felt anxious, like I couldn’t breathe. The insomnia was a more physical symptom that made the mental symptoms worse. I was angry, controlling, and also out of control. I couldn’t think straight, couldn’t remember. All of this was showing up at work and in interactions with strangers and loved ones. And I wanted to kill myself. Sometimes. There was that too.

It is not a nice way to be in the world, when you can’t trust your own mind.

All of these things I had done my best to manage. I had used the two weeks in each month before mid-cycle to repair, apologize, and prepare for the next round. Before YAZ, I had seen my symptoms worsening. I didn’t want to find out how bad it could get. It was clear that I would have to go off the YAZ for some amount of time so my body could get back on a regular cycle.

And then there was the pain. The endo pain. By December I felt like I was in labor all day long (and because I have been in actual labor, I know what that feels like – it HURTS. It isn’t meant to last for days and days and days and months).

Somewhere between endo, PMDD, and December of ’08, I had also developed something called Postural Orthostatic Tachycardia Syndrome (POTS) – yet another illness few know anything about. POTS means that sometimes, to put it simply, I can’t handle gravity. My body’s autonomic nervous system is out of whack. My heart rate rises and rises over nothing, trying to manage the simple act of standing up. At its worst, POTS symptoms make me look like I’m dealing with congestive heart failure. I never know when it is going to happen and sometimes there are months in-between episodes, but when it happens I can’t drive or work or take care of my son or so much of anything except lay down.

I’d had it with unpredictable illnesses and the fatigue that comes with POTS, endo, and PMDD. I’d had it with trying treatment after treatment and facing doctor after doctor who had no answers or who had never heard of POTS or PMDD. Something had to give and I didn’t want it to be me. So I said enough. It was time to take a chance and attempt to be rid of 2/3 conditions.

Seeing it here, all written out, it makes sense. It sounds reasonable, to want something to end such awful things. But when I began looking for books about hysterectomies, I mostly found books that were against it or had nothing about the surgery and PMDD. I believe I found one book with 5-6 lines about PMDD and hysterectomies. I definitely felt there were women who felt it would be wrong of me to have a hysterectomy. I felt the weight of history, the history of women who probably shouldn’t have had a hysterectomy but were given one. Cancer and hysterectomies seemed to be most acceptable.

What I have come to realize is that you cannot allow anyone else to tell you when the right time to have this kind of surgery will be. Good doctors and other women can help you sort out your feelings and options, but at some point it becomes appropriate to say: Please don’t tell me about another pill or herb or alternative treatment and/or, please allow me some space to make my final choice.  There may not be many books that have stories of women who look like you. You might meet one doctor who thinks you should and another who thinks you should not, depending on their personal opinions about hysterectomies and how much they know about PMDD. You cannot know how a surgery will go if you choose to have one. You do not need to justify your choice to have one (even if you feel you should). I would say that for your own benefit, it would be helpful to feel you have done what you are willing to do in regard to other forms of treatment.

I say all of this but I wanted permission. I wanted an official certificate that said I had done everything I could possibly be expected to do and that the time had come to grant me a chance to be free of illness. I was so worried about what ifs, too. My doctor left the final say up to me. In my head that meant that I would be responsible if anything went wrong. 

If I could go back and be the person I am tonight, I would say this to myself and other women:

You cannot know every possible outcome of the choice to have a hysterectomy, and not knowing is okay. I don’t expect you to be able to predict the future. No one should expect this of you.  I give you permission (if you need it/if it helps) to trust yourself to make the best possible choice.