Hystery (her story)

Perhaps it’s a by-product of age, or maybe genetics, but the last few years of my reproductive health have been tricky for me.  An incident of extreme pain and heavy bleeding put me in the hospital back in 2007.  The doctor discovered cysts on both ovaries, one of which gave him a cause for concern.  The next 8 months were filled with tests: blood tests, exams full of poking and prodding, and both external and internal sonograms.  I spent that time waiting to hear if I had ovarian cancer or not.  I was 39.  My kids were 9 and 4.  My son had recently been diagnosed with autism, and my husband was physically present yet somehow always somewhere else in spirit.

I was scared shitless.

The thoughts flooded in: mortality, death, fear, anxiety, uncertainty.  I worried about what John and the kids would do without me.  I didn’t want to die.  This was all on top of so many other changes and challenges that I was stressed out to the point of no sleep and hair loss.

After months of not knowing what was going to happen, I finally heard from my doctor what I had prayed to hear.  I did not have cancer.  The cysts were shrinking.  I was going to be okay.

I was just days away from turning 40.  I was too relieved to care about the significance of this milestone birthday.  I was just overjoyed to be living to see it.

During this time, there was one piece of information among all the others that stood out and stabbed me in the heart every time I thought of it.

I was not able to have any more children.

The news was hard to swallow.  I had been on the fence about having more kids because of my son’s diagnosis, and also because of the financial woes we were experiencing.  Even so, I was not ready to give up on that part of my identity.  I didn’t know what it would mean to be unable to have children, to be one of THOSE WOMEN.  Yes, I admit (with some significant shame) that I had always felt sorry for “barren” women.  I didn’t think of my uterus as superior to theirs, but I had embraced my own fertility and childbearing so fully that I couldn’t be compassionate toward my sisters as I should’ve been.  Pregnancy and motherhood became strong feminist statements for me.  I pitied those who couldn’t experience it (but not those who chose not to — that was a weird dichotomy for me…).

Now I was one of them.  I grieved the loss of the babies I would never have.  I cried at this unwelcome change in my status.  I worried what this change would bring to my marriage, which was going through some pretty heavy difficulties.  Even though I was happy to be alive and not have cancer, I was devastated that this choice had been taken away from me.  It was one thing to not want more children and another to not even have the option of more children.  I was pissed.

Frankly, I was really a big baby about the whole thing.  In retrospect, I’m pretty ashamed to even admit that I felt this way.  I’m also happy to say that I’ve come to my senses.

After our move to Oberlin in late 2008, I found a new gynecologist. I was diagnosed with Polycystic Ovarian Syndrome (PCOS), told (again) that I was unable to have children due to a “uterus full of fibroids”, and put on birth control pills and medication for pre-diabetes.

I’d always been predisposed to depression, and this situation sent me reeling. It was a slow and steady decline into isolation and drinking too much wine in front of the tv. I’d also become obsessed with running and physical fitness, which wasn’t bad in and of itself. I was looking for something to fill the hole created by the loss of my career, my friends, and my fertility. Not everyone could see it, but I was spinning out of control.

Even worse than finding out I was unable to have more kids, I changed gynecologists and found out that I was not infertile and never had been. At that point I felt so cheated. It was another knife in my heart.

It was a long journey back to feeling good about myself after that. I did a lot of hard work and soul searching. Eventually, I came to terms with my body as it was. I accepted my situation and moved forward.

About a year ago, I noticed that my periods were getting heavier and more painful, despite the fact that I’d been on the pill for a few years. I was seeing a primary care physician, but I’d put off finding a new gynecologist (the third since my move). My doctor referred me to someone she recommended highly. Unfortunately, she was also ridiculously popular and damned hard to get an appointment with. I finally was able to schedule something two or three months out, which seemed to be okay.

Toward the end of April, I went in for my yearly check of my lady bits: external and transvaginal sonograms and a 3D mammogram. Everything seemed fine, and so did the tests of my blood and urine. I went home feeling like things were okay. John left town the next day. Everything was going as it always did.

Four days later I left work early and drove myself to the ER.

I had not felt pelvic pain like that since my trip the hospital in 2007. I was scared, alone, and worried about my kids. There were more tests, including a sonogram that necessitated a catheter. I was embarrassed and humiliated and I just wanted to go home. I was told that there was nothing readily apparent going on and that I needed to do everything I could to get my appointment moved to the soonest possible date.

By the time I saw the new doctor, I was ready to remove this defective uterus myself with dental floss and a spoon. She was somewhat more cautious and significantly less interested in hopping straight to the surgical option. In hindsight, I really appreciate her reluctance to cut first and ask questions later. She took me off the pill so we could see how my natural cycles would go. A cycle or two. She asked me to come back in about six weeks.

As bad as they’d been, they got worse without the hormonal help the pill provided.. I went back as prescribed and reported my situation to the doctor. I will always appreciate how she listened to me throughout this process, and how she laid out all my options with their pros and cons. She was never in at hot hurry to start cutting me to pieces, which clearly showed her respect for my health and my body.

Our first step would be a procedure called endometrial ablation. After dilating my cervix and scraping the endometrium, the doctor would use an instrument to cauterize the vessels supplying blood to my uterus. I would be under a light general anesthetic because the entire thing would take less than an hour. My recovery would take about a week. There was the possibility that I might continue to get periods, but they would be lighter and eventually cease. I would avoid a more extensive surgery and keep my uterus. It seemed like a win-win situation.

I had the ablation the week after I returned from vacation in Virginia. Aside from some normal post-op bleeding and a bad reaction to the pain killers, I was doing fine. My post-op check up was really good and I was cleared to return to normal activities. Everything seemed fine.

For six weeks, I had no period and no pain. Finally, I thought, I have some relief. It was short lived.

I got my first period on October 4. I was surprised, but I was aware that it might happen. I was told that it would be shorter and lighter than before. It was neither of those things. Within 24 hours, the flow was heavier than it had been in years with episodes of gushing that soaked to the outside of my clothes. I tried desperately not to panic, but I was petrified with fear. I called the doctor on call and waited to hear back.

I was put on a medication to stop the bleeding and told to see my doctor as soon as possible. When I saw her, we discussed my options once again and again I was sent home to wait and think. Was this bleeding a one time thing or the shape of things to come?

That period lasted 35 days. At the end, I was gushing and hemorrhaging again and had to take more pills to stop the bleeding. I was hysterical. There was no way I could live with this level of blood loss and still function as I waited the two to five years before menopause. All I could do was work and come home to lie down. I was gaining weight and feeling like a sloth. I knew what I had to do. I was afraid, but my frustration and feelings of hopelessness had overridden my fear. At my next visit, I said the words I was trying not to say for months.

I want a hysterectomy.

From here things moved pretty quickly. I made the decision with my doctor on November 5. I was scheduled for surgery on November 24. I made arrangements at work and for my kids. John took time off to be with me the day of the surgery. I sought advice and council from women I knew had been down this road. I did research. I prayed. I asked folks to pray for me.

I tried to come to peace with what I was doing. I knew I was making the right choice, but it was a hard choice. Perhaps it seems overly dramatic to some, but I mourned the loss of my babies’ first home, and the children I was never able to have. I worried about how this change would effect my sex life and how John would see me. I worried about how I would see myself.

The day came, and I kissed my kids goodbye and sent them to school. John drove me to the hospital and I was taken back to prepare for surgery. I met all the nurses, anesthesiologists, and assisting physicians before my doctor came back to see me. We had discussed everything beforehand: she was doing a laparoscopic super-cervical hysterectomy, taking my Fallopian tubes, and leaving my ovaries if they appeared healthy at the time of surgery. My cervix would be left behind to prevent vaginal prolapse later on. There would be one incision, about an inch long, just under my belly button. Surgery would take about 90 minutes and I could even go home that night if I wanted.

I said no to that last part. I wanted to be observed by professionals overnight and not put John through the task of taking care of me post-op. Knowing what I know now, I’m glad I chose to stay.

John stayed with me until it was time for me to go to the OR. He kissed me and told me he loved me. He smiled and did his level best not to look scared. I knew he was, and that was okay. He put on a brave face for me. He knew I was terrified and conflicted. One look at the tears in my eyes told him that.

Before my previous procedure, I had been given a shot to “take the edge off”. I had gotten one this time as well, but it didn’t seem to be working. Before, I had fallen asleep (or so it seemed to me) before I got to the operating room. This time I was still awake and aware. Why wasn’t I asleep yet? What was happening? I saw the OR, I heard my doctor greet me, and I saw some of the apparatus and instruments. I panicked. Please, God, knock me out now. Just as I was about to ask someone why the hell I was still conscious, a man on my left took my hand and told me he needed to stretch out my arm. His voice was kind and reassuring.

It was the last thing I heard.

Darkness fell over me quickly. From that darkness, seamlessly, I remember gradually becoming conscious again. I was in post-op recovery. It was over.

I was really thirsty. The breathing tube had left my throat scratchy and dry. I began to feel pain creep into the periphery of my awareness of my surroundings. The nurse gave me morphine. It felt like she was asking me over and over what number the  pain was, and over and over I said 5 or 6. I thought this heifer was going to OD me, so I stopped telling her 5 or 6 and just said 3. I went back to sleep after that.

All I remember saying other than that was, “I want John. Where’s John?” I wanted to see his face and hear his voice. Only then would I know everything was okay. He was waiting for me in my room. I was groggy and only vaguely coherent, but I was tremendously comforted by the sound of his voice. It was after that initial feeling of comfort that the surprise came.

There had been a complication during surgery. There were “unusually strong adhesions” between my uterus and the lower part of my colon. During surgery, my doctor had to call in a consulting colorectal surgeon to come assist her. There was an additional small incision made and my uterus was able to come out without damaging my colon. But my doctor was concerned that someone with no prior surgical history and in good health as I was would have adhesions like this. I was told to see a gastroenterologist to check this out. The hysterectomy was a success, and now I had to deal with round 2: the battle of the sigmoid colon.

I was seriously beginning to wonder just how twisted God’s sense of humor really was.

Since the surgery, I have been on a slow steady incline toward normal. I’m beginning to exercise again and my energy level is increasing. My worries about my sex life were… unfounded, shall we say. I’m still mourning a little, especially when I see women with babies. My own beautiful children are each standing at a threshold, about to enter new phases of life. That makes it hard for me too, I suppose. My daughter is nearly 18 and about to go to college. My son is growing and changing on his journey to manhood. My time for babies is done, at least until they have babies of their own and I have the privilege of being a grandmother.

Rites of passage are common for young people moving from one phase of life to the next. We celebrate them in our spiritual, cultural, and religious lives with bar mitzvahs, first communions, confirmations, and other celebrations. I wish there were a rite of passage for women, and men, whose children are growing up and leaving. I will have devoted the vast majority of my life to the upbringing of my two kids and their subsequent well-being. They will move on and leave me, as they should. How will society mark my passage from fertility and reproduction to my current state? What am I now that I can no longer bear children and the ones I did bear are no longer babies? I am neither young nor old, neither maiden nor crone. I am a woman in between times. I am a woman who must tell the world who she is, rather than wait for that world to define her. I’m a woman who must change the way she sees the value of womanhood rather than give up and feel she is somehow less than a woman as she is.

I am a woman. I am still here. I am still strong. I am not defined only by my parts or my babies. There is so much more to me than that.

Losing my uterus has taught me how to look beyond the basic functional definitions of womanhood and to see myself and my sisters in a new light. If my life was never defined by my parts, then losing them doesn’t end my life. That’s such a simple thought, but it was too much for me to grasp until now.

Today, I am moving away from my grief to a new life. The future is bright. I look forward to the next leg of my journey.