There’s something about being told you need a hysterectomy that sends our worries into overdrive. It’s probably because there’s a lack of good information out there and the hysterectomy side effects that are most personal are the ones that are talked about the least. When you’re embarrassed to talk to your doctor, and you don’t have a girlfriend who’s already been there, where do turn to get good information?
Let me start by telling my own hysterectomy story.
But first, let me state that I was definitely NOT the perfect patient. In fact, I wasn’t even a good patient. I argued with each of the doctors when they recommended that I needed a hysterectomy and I seriously considered refusing to have the surgery done. I was flustered, in denial, and mad.
Yep – just the kind of patient every doctor wants to take care of. You could definitely say that I went into my hysterectomy kicking and screaming.
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The story starts in the spring of 2012, right after my mother passed away. What I expected to be a routine checkup turned into a series of tests, biopsies, and doctors. This post contains some excerpts from a diary I kept during this time. I have tried to maintain some decorum even though the topic is a personal one and there were hysterectomy side effects that I privately worried about.
For the record, my doctors were wonderful. I give them full credit for doing exactly what was needed to save my life. I wouldn’t hesitate to recommend any of them to any woman in the same situation. The description below is simply a record of the emotional roller coaster I experienced at the time. I hope that this will encourage other women to talk about their personal experiences with friends, family, and their doctors. Only with information and education can we get through the tough life battles.
Diary Entry – First of May 2012
What started out as a reaction to Mom’s cancer, recent hospitalization, and death has turned into my own health drama. After mentioning in passing to my new doctor that I’d had a couple of episodes of spotting, I was sent for a pelvic ultrasound which revealed that my endometrial lining was 11 cm thick rather than the 4-5 cm that is considered normal.
Dr. X informs me that I need to see a gynecologist and have a biopsy done. I’m not too worried at this point. After all, I’ve had to have additional mammograms done for years because of dense breast tissue. I figured this would be another test that turned out to be nothing.
I was wrong.
I selected a female gynecologist (Dr. Y) who was top rated and had my regular doctor forward my test results to her. I make an appointment with her. I like her a lot. She’s young, knowledgeable, and I’ve always had a preference for female doctors. I also like the fact that female doctors have the same body parts that I do. They’ve suffered from periods, had babies, and either have gone through, or will go through, menopause. It may be a bias, but it’s mine and I’m choosing the doctor. After the initial visit and examination, she sets a return appointment to do a uterine biopsy in her office.
“Ok, no big deal,” I thought. But during the biopsy she struggled to get a scraping from inside my uterus.
“I can see why you’ve had three C-sections,” she said. “Your cervix isn’t opening enough to let anything in or out.”
Great. It’s already frustrating enough being on the examination table with your feet in stirrups without learning that you have an uncooperative cervix. In addition to the fact that trying to get that little scraping instrument through my cervix hurts – it also means that the biopsy will have to take place in a surgical center where they can give give me some happy gas and dilate my cervix to take a look around and get the scraping they need. Oh yes, it’ll also be more expensive too and another thing I’ll have to take time off work for – just great.
Dr. Y doesn’t waste any time in getting my biopsy ordered. I’m scheduled for a surgical biopsy a few days later. I have to admit that I’m more nervous this time. I guess the hospital-like atmosphere is responsible for that. At least, that’s what I tell myself as I begin to drift into sleepy land.
When I wake up Dr. Y is at the foot of my bed with my test results. Holy Pete! I didn’t expect things to move this fast. She tells me that the endometrial biopsy shows that I have something called complex hyperplasia with atypia.
She tells me that I need to have a hysterectomy because what I have has a higher risk of turning cancerous. I ask if she’ll do the surgery (I still like her even though I don’t like the news she’s giving me and I’d really like for her to do it) but she refers me to a gynecologic oncologist since there’s a higher cancer risk.
I take a deep breath and schedule the appointment with Dr. Z.
Dr. Z is a highly respected doctor in the metroplex and I’m grateful she’s taking my case. I like her immediately but I argue with what she’s recommending – a radical hysterectomy with removal of not only the uterus, but the ovaries and cervix as well. I am not a happy camper.
I was all set to demand that Dr. Z not remove my ovaries and cervix. My research on the internet had me convinced that there was no need to remove these healthy parts of my anatomy. Dr. Z tells me to avoid the internet when it comes to medical issues. I’m a bit insulted at this. I’ve spent the last four years working on my PhD – I know how to assess the validity of internet sites! After all, I haven’t been getting my information from just any old junk site. But I have been doing my homework like any good patient should. Besides, I’ve still got my doubts that I need this surgery.
Both Dr. Y and Dr. Z have explained why I need a hysterectomy. The chances that this condition will turn into full-blown cancer are 30%.
“Gee, that doesn’t really sound so bad,” I remember thinking. I even remember telling Dr. Z that with only a 30% chance, I still had a 70% chance that we were over-reacting. My hubby is not happy with my attitude. He’s siding with the doctors and telling me to have the damn surgery.
Now I’m not particularly happy with him either.
However, the oncologist’s rationale for removing everything is that the endometrium extends into both the Fallopian tubes and the cervix. Leaving any part of the endometrium increases my cancer risk, which is already too high considering my diagnosis. After some serious discussion with hubby and Dr. Z, I’ve finally consented to the surgery even though I’m not happy about it. I’d like to have the surgery in July. I’m a bit of a control freak, and July is better for my work schedule. However, the doctor says we don’t need to wait that long since I’ve had post-biopsy bleeding. The surgery will take place in two weeks and work will just have to adjust.
I feel like I’ve been hit in the head with a 2×4 at this news. I’ve experienced no physical pain and have been feeling perfectly fine, which makes it hard to believe that there is anything wrong with me. Part of me fears that the doctors are just being over-cautious. I’m still sane enough to know that I’m being unreasonable, but I’m too emotional to care. I don’t want to have this surgery.
I’m stunned at how badly I am reacting to the news. I’ve fluctuated from depressed to angry and I’ve even considered refusing to have the surgery and just take my chances with the odds. However, since the odds haven’t seemed to be on my side lately, there’s great fear in playing Russian roulette.
Complicating the matter is that my mother has just passed away from cancer. Various cancers run in the family, but her recent death has made me even more afraid of a cancer diagnosis than I might be ordinarily. And, an acquaintance from graduate school was currently losing his battle with cancer. Watching his deterioration through pictures and posts on Facebook has convinced me that fighting cancer was not something I wanted to do given a choice. Joe was a big strong healthy guy until the cancer became uncontrolled. I sadly watched as he became a shadow of his former self. While I’d like to get thin, I don’t want to have to die to do it.
One Week Before Surgery: May 4, 2012
I am depressed as hell and feel like everything is crashing down around my ears. Maybe it’s the stress of the past few months: the car wreck, the broken shoulder, taking a hiatus from grad school, Mom’s illness and death. But I feel like I can’t face anymore and after a meltdown in the car, hubby and I decide that we’ll play hookey from work and go out of town for the weekend before I go under the knife. I had wanted to have this surgery in July and to take a romantic trip to a cabin, as sort of a second honeymoon, before having this irreversible surgery.
The trip wasn’t to a secluded cabin, but after the weekend, I feel more at peace. Sometimes a change of scenery and the chance to escape is just what the doctor ordered.
Two Days Before Surgery: May 12, 2012
I’m a basket case – again! Last night I was crying after searching the internet for information that might make me feel better about the impending surgery. But after reading more horror stories about the side effects of a hysterectomy I feel worse than before. I keep wondering if people are lying to me by telling me that this surgery won’t change anything about my personal life. Everything I read on the internet keeps pounding home the idea that my physiology after hysterectomy won’t be the same and that my personal functioning and sexual response is either gone or weakened. Some women have even posted that their love lives simply went to hell because they no longer had the same feelings they did before surgery.
I feel like I have a death sentence hanging over my head – even if it’s only the death of my feminine response. It may be melodramatic and childish, but it’s how I feel. I recognize that my reaction is frantic, illogical, emotional, and childish; yet, I can’t seem to help myself. What if this surgery strips all those feelings and desires away? How will hubby feel about me then and how will I feel about myself? Despite the fact that hubby keeps telling me this is a way to be sure I don’t die from cancer, I can’t help but wonder if it’s worth the price I’m going to pay. At what point does quality of life count for more than mere years of life?
Day Before Surgery: May 13, 2012
I’m awake early again as usual. I’m supposed to start another clean out of my system today which should make me really sore. I eat a bowl of pasta, my favorite comfort food, knowing that I’ll probably regret it later once the laxative kicks in. But right now, my desire for the familiar and comfortable outweighs my good sense.
I seem to be overwhelmed by the need to know exactly what they will do to me tomorrow during the vaginal laparoscopic surgery. I search for the precise steps they will take to remove the organs from my body so that I know what to expect during recovery. I’m freaked out to know that they’re going to make an incision in my vagina and then sew it back up again – along with sewing up the end of my vagina after they remove the cervix and the other organs. I also wonder if I’ll feel like the same person once the surgery is done. Will I be able to tell that the organs are gone? Will I be depressed or emotional? Will I get back my normal functioning? So many questions are going through my head that it’s hard to process them all.
I’m frustrated with the lack of real information on my condition and the options surrounding hysterectomy and its side effects. The internet is full of scary information, but sorely lacking in accurate, useful, medically sound information. It seems that all I can find is websites containing horror stories from women who have been left feeling butchered and like less of a woman. These stories scare the hell out of me and leave me depressed.
My questions to the doctors about the effects of the surgery on my love life haven’t been answered to my satisfaction. I can’t help but be concerned that even women doctors are so ingrained with the “standard of care” that they don’t consider other options or consider that maybe the cure is worse than the illness. It’s my quality of life that’s going to be affected and changed forever if the doctors are unfamiliar with sexual dysfunction after hysterectomy. But does anyone really take a middle aged woman’s intimate life seriously? Does anyone care that the hysterectomy side effects may leave her feeling less like a woman? Or is a middle aged woman considered abnormal for wanting to preserve that part of herself? I ask myself all these questions and don’t get satisfactory answers.
One thing that continues to surprise me is my own lack of information concerning my physiology. I’m educated and no prude. So why don’t I have a better understanding of how my body reacts? If I knew for sure that the removal of my uterus, cervix, and ovaries would have no effects on my love life, I could approach this hysterectomy with much less fear than I currently have. I suspect that I wouldn’t be depressed either because my depression is caused by grieving what may be the end of feeling like a woman. Why isn’t there more information out there about hysterectomy side effects? Where does someone go to get accurate information when it doesn’t seem like anyone wants to discuss this topic?
Since this entire thing got started I’m aware of more cramping in my uterus than I’d previously noticed. I don’t know if I’m just paying more attention to my own body, if my condition is getting worse, or if all of the medical procedures I’ve been through lately just have it irritated. I did have an episode of bleeding three weeks after my D&C which I suspect is not normal.
May 16, 2012
I came home from the hospital yesterday. My pain isn’t too bad once I finally started to pass the gas that was built up in my abdomen. My stomach looks like I’ve got four knife wounds in it but they will likely fade and seem smaller over time. I talked to a lifelong friend yesterday. She also has had the same procedure I had and she says her love life is absolutely as good as it was before surgery. She gives me hope that I won’t have lost that part of myself.
I had a conversation with a former student of mine last night. She’s 35 and it was nice to have an intelligent conversation with another woman about this. There is such a lack of good information out there – or at least what I found wasn’t helpful enough to make me feel better. Women need to talk to each other more about the various aspects of their lives – health and sexuality being two that are important.
Surgery and recovery went well and I feel great. Dr. Z told us that the lab results done after surgery revealed that I definitely had cancer cells in the endometrium. However, since everything was removed, I should have no further problems. I was told to follow up with pap smears every six months for the next few years, which I did.
I’m happy to report that my doctor was very skilled and that my fear and paranoia was for nothing (other than to make me an irrational basket case!). I’ve noticed no changes in the way my body functions or responds. However, the experience has left me convinced that women need more information and that we need to be less reluctant to talk to each other about personal issues – even when it’s sometimes difficult or embarrassing to do so (that’s probably when we’re most in need of talking to someone!).
6 Lessons learned from a hysterectomy
- Listen to your body and tell your doctor when things aren’t normal.
- Quit thinking you know more than your doctor does. I don’t mean that you shouldn’t do your research and be informed, but be careful. The internet can scare the daylights out of you because anyone and their dog can post horror stories.
- TALK to your women friends! You may be surprised to find out what they’ve been through and their experience may calm your fears or at least help you understand what to expect.
- Select competent doctors an then let them do their job – which is to save your life.
- Listen to the people around you who love you and want you around. Your decisions affect their lives too.
- Try to remain calm and rational. I completely failed at this and let my emotions make me crazy. Being crazy didn’t help either my doctors or my family.
More then 600,000 hysterectomies are performed each year (www.womantowoman.com), the surgery is second only to Cesarean section.
Types of hysterectomies
1. Abdominal – recovery time of 4-6 weeks
2. Vaginal – recovery time of 3-4 weeks
3. Vaginal with laparoscopy – recovery time of 3-4 weeks
Types of Endometrial Hyperplasia:
source: www. westcoastgynecology.com
Simple hyperplasia – has a less than 1% chance of progressing to cancer
Complex hyperplasia – without some form of treatment there is a 10% chance of developing cancer
Simple hyperplasia with atypia – has an 8% chance of progressing to cancer
Complex hyperplasia with atypia – has a 25-30% chance of progressing to cancer making this the diagnosis that most frequently leads to hysterectomy
Read here to learn more about gynecological cancers. And check out this post Mammograms, Ultrasounds and Taking Charge of Your Health to get more information on protecting your health.
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