On Tuesday, I see my surgeon. The reason?
I'm getting a hysterectomy.
I'm fully aware that this particular surgery is often done...well, unnecessarily.
That's not the case for me.
I have two reasons for getting it done. The first is that ever since my youngest, Eden, was born...I've had nothing but trouble with my periods. I am now routinely having two periods a month. I am having very heavy bleeding, migraines and awful bloating that is aggravating my neurogenic bladder issues (more on that later). I can never predict when a period will begin, so I end up wearing pads almost all the time. The migraines get so bad, all I can do is lay down in the dark with a cold compress on my head, waiting for it to end. To make matters worse, I am getting ovarian cysts almost every month. These cysts are painful and have led me, more times than I can count, to sleeping sitting up in a recliner in my living room. I don't particularly enjoy this: it's uncomfortable, and frankly I miss sleeping next to my husband.
This is no way to live.
But even with all that, it's reason number two that keeps me up at night, that makes me want to get this surgery.
It's my family's history with cancer.
It's quite extensive, so I'll only list a few examples. My paternal grandmother died of uterine cancer at 49. My maternal grandmother had a hysterectomy at 46 and beat ovarian cancer.
And my mother died of breast cancer two days after her 44th birthday. She was diagnosed at age 39.
I am 38.
Given these two factors, I'm convinced this is the right thing to do. I had a second and third opinion, and this surgeon will be opinion number four. I doubt it will be any different than the first three.
I admit to being fed up with my menstrual problems. And I admit to feeling like a ticking time bomb for reproductive cancers. I don't want any more children (I had a tubal ligation in 2003), and I don't want to risk any more miscarriages (I don't want to get into that, but suffice it to say, it's happened to me and I don't want it to happen again).
My gynecologist, whom I will call Dr. Violet (after the Peanuts character with the naturally curly hair), is absolutely fantastic. She will be present at my surgery, but referred me to this new surgeon for a very good reason.
This new surgeon is an expert in a relatively new field, that which recognizes that women often have urinary issues related to childbirth. It is possible that this surgeon could, while giving me the hysterectomy, also do a surgery to help relieve me of some of my MS and childbirth-related urinary problems. I'm trying not to get my hopes up, in case I turn out not to be a candidate, but the idea quite strongly appeals to me.
Urinary issues are quite common in MS patients. It's one of those topics I haven't shared a lot about, purely out of embarrassment. What woman in her 20's & 30's wants to admit to having urinary problems?
For me, the main issues are frequency, urgency and leakage. The first is the worst, and was one of my earliest MS symptoms. After I gave birth to my daughter Wren, I had expected the constant need-to-pee to die down, just as it had after my son Phoenix was born. But it didn't. A year later, I began to complain of it to doctors. "It's like I'm still nine months pregnant," I explained. I was having trouble at work, as I was forever rushing to the bathroom. I also couldn't get a real, full night's sleep. On good nights, I woke up to pee four or five times. On bad nights, it was two or three times an hour.
16 years later, and I still haven't had a full night's sleep. I miss it...greatly.
Sometimes, I would urinate so frequently my bladder felt "bruised" and hurt. UTI's and kidney stones became frequent occurrences. Cranberry juice went from something I drank rarely with vodka to something I drank regularly, sans vodka. In fact, drinking alcohol at all became a "special occasion only" treat, as more likely than not it would exacerbate the problems.
The very worst of it happened when I was pregnant with Eden. It got so bad, I had to have surgery while pregnant to place a stent in my kidney. I was hospitalized frequently due to that issue, and the severe hyperemesis (super-bad morning sickness). As anyone who's had surgery while pregnant can tell you, it is a VERY stressful and frightening experience.
And getting the stent removed, a few weeks after birth? One of the single most painful things that has EVER happened to me. Yikes!
So I have a lot invested in this possibility. I want very much for the surgeon to say: yes, we can do this; yes, it will work. But again...I'm trying not to get my hopes up.
Years ago, I was evaluated for a surgery that had the potential to cure my trigeminal neuralgia. I was thrilled (and blogged about it here). I assumed I was a candidate, and began to envision a TN-free life. I was so very excited.
And then the bad news...I was not a candidate. The surgery was not for me.
I was beyond disappointed. I was deeply depressed, and even had my anti-depressants adjusted. It never occurred to me that I would be turned away. I very literally mourned that TN-free dream. It was a bitter lesson learned.
So, I'm focusing on the positives of the hysterectomy: no more bad, frequent, irregular periods. No more terrible cramps, insane bloating & migraines. And most importantly, my cancer risk will plummet.
And if the urinary aspect works out, great.
That's not to say that this surgery doesn't have its downsides. It is a serious surgery, more serious than I have ever had before. It will require several days in the hospital...likely more than the norm because of the high risk of infection that comes along with MS, an autoimmune disorder. It will be a long recovery: at least six weeks of total bedrest. I don't tend to deal well with that, as it bores me to fucking tears. The surgery (and the recovery) will be painful. I will be taking painkillers that I don't tend to enjoy because of the side effects (nausea, constipation, feeling like a damned zombie).
And then there's menopause.
I imagine going through menopause at 38 is going to come with its own obstacles. Do I take HRT? Will hot flashes affect my all-too-heat-reactive multiple sclerosis? Will it affect my sexuality, and if so, how do I handle that?
Fortunately, I'm not going at this alone. I've found a fantastic resource, the Hyster Sisters website & support group. It's been amazing, and the information there has made me feel so much more at ease with all aspects of my hysterectomy. I recommend it highly.
Well, I shall shuffle on to sleep now. Updates to follow, so stay tuned, ZPT readers...
