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.

 

after #3 (journal entry 21 days post op, nothing you can name)

I have a dream in which I am standing in a high school. A teenage girl stands beside me and shares that she almost had to have a hysterectomy. But I was too young, she says. They found another option. Oh. I had to have a hysterectomy recently, I reply. She looks at me and in my dream there is so much space between us but we are standing right beside each other. I am suddenly afraid that she will tell the way I used to fear gossip and revealed secrets in high school.

 

I wake and think about how I feel too young to have had a hysterectomy, but somehow not young enough to have the right to object. I have, after all, had one child. And I am not, like some women who have this surgery, in my 20’s. But there is this baby thought, the one where I kept the door open to the option of having one more. I imagined I would be a 39 or 40 year old pregnant woman.  I thought my son would like to be an older brother. I tucked away names and imagined baby girls and baby boys in brief day dreams. There was no intense longing, but an unquestioned possibility.

 

Yesterday I saw a neighborhood acquaintance that I felt comfortable speaking with about my surgery. I shared the news with another woman later who asked where I had been (she hadn’t seen me around my son’s school). I feel an urge to share this with select people in order to face it, to own it, to be okay with it. But I am afraid the sharing will spread until everyone looks at me as the woman who can’t have babies, who has been emptied of all identifying reproductive organs, who isn’t the same as they are, who isn’t anything they can name.

 

 

 

Update: 5/28/09 appt: Decision & date

My appt went awesome, man it has taken years to say that!
I saw another doc in the office at the Womens Institute, my doc got called out for surgery and I didn’t want to come back that afternoon.

He confirmed by decision and said that he completely agreed with my choice and that the ovaries must go to make a difference.

He talked with me, not at me, and found that I had exhausted all measures at this point. They don’t have anything else for me and believe it will take away my pain too.

Though I wasn’t expecting to meet another doc it went well, a 2nd opinion.

We scheduled my appt for the earliest available… July 18th!

I am even more excited and relieved that soon I will be living the quality of life I am so desperate for, though I am aware many more stops will be difficult along the way. I’m ready. I feel I have a great support system in place and as hard as living with PMDD is, I will definitely make it thru this.

Stef

Separate Men & Women Forum now set up

Hey everyone!

Okay as you just read the forums are now separate. Ladies, you stay at the one we have been using and Men, you now have your very own. Check it out at: Men and PMDD forum (menandpmdd.ning.com)

I hope this works out for everyone.

Stef

after # 2: (journal entry, day 24 post op)

She sees that illness has made her more cautious. She oozes cautiousness. Everything must be planned out. Worst case scenarios must be considered and then, plans must be made for when they will happen. Not if. When . She feels the weight of her cautiousness in her daily life. Sometimes her heart moves too fast out of imagined things and what ifs. Her cautiousness means they have life insurance and a guardian for their son in case they die. They have health insurance and would have other types of insurance if they could afford it to guard them from other things they need to fear. This isn’t unreasonable, insurance, but what drives it makes her sad, worried, anxious.

 

Her husband chastises her for her moments of silliness as he is very serious,  but he has no idea how silly and free she can be. That level of silliness and freedom has been pushed down by many things, one being her health or lack of health. Never knowing what to expect, one diagnosis after another, the horrible realization that doctors know so very, very little about the mainly female specific illnesses she has acquired. And then the almost monthly sexual assault reports that come via email regarding female studentson the campus where she and her family live. She has become afraid of being female, of having this female body. Even after the hysterectomy, it’s still there.

 

But. On an early spring day, sitting in her glider, listening to silence, recovering from having every reproductive organ removed, she begins to remember who she is. There is some breathing room now and there is a reprieve from illness. There is perspective and there is mourning. She doesn’t want to let it slip away as it has before. She moves to the shower and prays, and in the quiet that comes after her prayer she hears one word and that word is dance.

 

Beneath the water she begins to hum a song and moves her arms slowly to the rhythm. She begins to sway her hips and then her feet take small steps out and back and there she is, being silly, being herself, being free, dancing to the song in her head as she cries and laughs and steps out of the tentative way she has been living in the world and in her body, a body recovering from surgery, recovering from illness, recovering from fear.

 

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