Uterus Didelphys: Double or Nothing

uterus didephys hysterectomy complications
Attitude has a lot to do with what our journey will look like.
6 Comments / 1 Shares

Many body parts are designed to come in pairs; legs, eyes, hands and ears are perfectly formed to complement one another. Little did I know that sometimes body parts not designed for a companion can have a twin. Newly pregnant with my first child, my doctor discovered I had a condition called uterus didelphys. It turns out that I had two uteri, two cervixes, two ovaries and two vaginas. Fortunately, since I only had two ovaries, I could not get pregnant in both uteri at the same time.  I carried my first child in one uterus and my second in the other. Because of the condition, both pregnancies ended up in C-sections due to the fact that my uterus did not have an opening from which the baby could emerge into the birth canal. For the most part, having uterus didelphys did not affect me other than when I was pregnant and once a month when there was two of everything going through its cycle.   

In my forties, I started having a lot of pain and abnormally heavy periods, even for someone with uterus didelphys. I finally made an appointment with my gynecologist and discovered that I had developed endometriosis and would need a complete hysterectomy. I scheduled what was considered a routine surgery not knowing that it would bring me the most physically traumatic year of my life.

In the hospital I asked my daughter to do me one favor; keep my catheter bag covered. Every time I would go to visit someone in the hospital I would get uncomfortable and nauseous if I saw the catheter bag.  I am a private person so I wanted my catheter and bag hidden from visitors. Now I know that going to the bathroom is a natural part of life but I have never liked to talk about it and I definitely did not want anyone to see mine or even have to acknowledge its existence.

The hysterectomy proved to be more complicated due to the need of removing two of everything instead of the usual one. I went home to recover and after a couple of weeks noticed that I could not hold my urine. A return visit to my doctor confirmed that I had developed a fistula, caused by one of the stitches pulling on the bladder.  There was a tear in my bladder causing urine to drain out through it, giving me no control.

I was sent immediately to an urogynecologist who specialized in reconstruction and had a 99% success rate with bladder repair. He was at the top of his field and had only been unsuccessful with one patient who had multiple complicated medical issues. The doctor was confident that he could help me and he immediately scheduled a small day surgery to cut the stiches that were pulling on the bladder in hopes that the hole was miniscule and would heal on its own. To my horror, a personal catheter was strapped to my thigh for a month to give the fistula the best environment to repair itself. For that month I had to continue to look professional and teach teenage girls to be confident and attractive although I did not feel any of those things with the sensation of a warm bag on my thigh and the slosh I heard as I walked.

After a month a new test revealed that the hole had not repaired itself so the next step was to go in and repair the bladder with surgery. During the procedure it was discovered that the hole was not tiny as many fistulas are but the size of a quarter. The repair was made and I was sent home again on bed rest attached to an even bigger catheter and bag for another month. It was devastating to have a catheter attached to me again. I hated it! I would pitifully drag it behind me like a tail not wanting to have anything to do with it. Finally, the month was over and I went in for the test that would determine whether my life would finally get back to normal. My very confident doctor, with the best success record, came in and told me that the surgery had been unsuccessful. My journey would have to continue and it included my dreaded enemy, the catheter.

Attached once again to a personal catheter I was sent to yet another specialist who was considered even more advanced than my former doctor.  Another surgery was scheduled and this time I would have to have two months of bed rest. But then an atomic bomb was dropped on me; I would be connected not to one but two catheters for those two months. Oh the irony of having the one thing I wanted to avoid become a permanent fixture in my life and was now even multiplying! One catheter would be attached regularly and the other would be inserted through the abdomen. You have heard of “double trouble” and “terrible twos.” Having to remove TWO of everything had now resulted in TWO months of bed rest and TWO catheters.

The surgery went according to plan and after two months of dragging TWO catheter bags around and staring at the walls in my living room I went in for the verdict. I hoped for the best but was braced for the worst. After all, nothing I had endured up to now had gone according to plan.  The news was good; I would be going home for the first time in a year without my dreaded “sidekick.” I was finally free!

As I looked back over that year, finally free from pain, pills and catheters, I was able to process everything that had happened. I did not understand why I had to go through all of that suffering and disappointment and I am sure everyone going through prolonged medical issues feels the same. Sometimes there is just not a good explanation for life’s struggles but I realized that I had learned several things through the experience. I learned that I can be stronger through physical pain and disappointment than I ever thought I could.  I now understand better what it means to have a prolonged medical struggle and I can empathize with those who do. Although my struggle was not life threatening, it did give me a deeper compassion for those who have chronic medical issues. It can be scary, lonely and difficult as you find yourself in a vulnerable place, completely dependent on others.

I do not miss my “buddy,” the catheter, but I can look back now and be grateful for the journey. I eventually made peace with my mortal enemy and was able to laugh and joke about it. I made it a little colorful bag so I would not have to see it or feel the warm plastic on my leg. I also gave each catheter a pet name; not a nice name but a name none the less.  I sometimes remember pitifully dragging my catheters around the house and now I laugh about how dramatic I was. I still would never want to have a catheter again or go out of my way to see one, but I am able to tolerate them now and not be grossed out by others who have them. In fact, before this ever happened, I would not have ever considered sharing my story so candidly, but having to deal with medical issues has helped me be more comfortable talking about things that I once was hesitant to acknowledge. Attitude has a lot to do with what our journey will look like. We cannot always control what happens but we can control our reaction to the “catheters” in our journey and we can grow from every experience we are given in life; even if it is a catheter … or two.

Comment on this story using Facebook.