Total Hysterectomy at 25: The Consequences and Benefits to the Surgery on a Young Woman
Major surgery for a young woman
I'm now 31 years old. I have one child, a boy, and had him when I was 21 years old. 4 years later, I had a total/radical hysterectomy, a surgical procedure where the uterus and ovaries are removed.
There are partial hysterectomies where just part of the uterus is taken out, or a total hysterectomy, where the entire uterus and one ovary, leaving one ovary intact. Then there's total/radical hysterectomy, where the uterus, the cervix, and both ovaries are removed (oopherectomy). Not being able to bear children is a common reality for all types of hysterectomies, but a total/radical hysterectomy carries with it, other serious consequences and effects that leaving at least one ovary intact, does not.
So, I had endometriosis since I was a teen. Endometriosis is the growth of uterine lining in other parts of the body, usually on the reproductive organs, and can grow on the bladder, liver, kidneys, anywhere within the pelvic region. It can cause pain and infertility. It often grows back after removal. I didn't start menstruating until I was 17, and I never ever had regular periods, usually only getting 2-4 periods a year. I had my first surgery to remove the endometriosis when I was almost 20. I conceived my son though the fertility drug Clomid, which is usually the first drug of choice when women have trouble conceiving, as it has fewer side effects than other drugs, and a very low risk of producing multiples. I had my son and didn't find out until after he was born, that I also had Polycystic Ovarian Disease or PCOS. PCOS causes hormonal imbalance in women and little cysts that grow on the ovaries. It causes irregular periods and often infertility. It explained a lot of issues I had experienced over the years. We tried birth control pills to help with the PCOS, but it didn't help. I had 2 more surgeries to remove the endometriosis between the ages of 22-24. It just kept growing back. I had a lot of pain and hormonal imbalance that affected my moods and overall personality.
My gynecologist and I were discussing a hysterectomy, and then during an ultrasound, he found a leiomyoma, which is a benign fibroid tumor in the uterus. They can grow uncontrollably if not treated. They can be removed, but can also grow back. Mine was small. But having the endometriosis, PCOS and now the leiomyoma, my OB/GYN suggested a total hysterectomy. I agreed to it. So at 25 years old, I underwent the surgery, still not quite knowing all the consequences of having it
I went into the hospital, it was expected to only be a two-day stay. However, during the surgery, the bladder was nicked, and I had internal bleeding. So I was in the hospital after the surgery for a week. I had had several surgeries prior to this (including an appendectomy and breast augmentation), and so I wasn't overly concerned about the pain. It was a bit more painful than I thought it would be but not altogether unbearable as I had a morphine pump for a couple days following the surgery. I was put in the maternity ward, presumably as a mean joke.
The morning after my surgery, I started experiencing the effects of menopause, which is what happens when someone has had both ovaries removed. I started getting hot flashes, and we aren't talking one or two a day that were relatively short and doesn't interrupt your life. They were severe, and I was having them about every ten minutes. I could also feel a real mood change and felt worn down, and not in the way you do after surgery. Overnight I went into menopause and being thrust into menopause so quickly, it's much more severe than when you ease into it over time, like happens for most women.
The crazy man-eating monster
When I came home, about a week after my surgery, I was having almost debilitating symptoms of menopause. The hot flashes were really bad, but my mood was worse. I was constantly yelling and screaming, quite angry 90% of the time. Everyone but my son felt my wrath.
The doctor had decided that I should not go onto hormone therapy, as the potential long-term side effects are thought to be worse than the potential benefits it might bring, especially being so young. So no hormones for the first 4 months or so. But then I couldn't handle it anymore and pushed for the hormone replacement therapy (HRT). He prescribed them, which were synthetic hormones. At the time, I didn't really know much about natural hormones, which comes from horse urine (not gross like it sounds). So I was taking the synthetic hormones (estrogen) about four months after the surgery. (There is a huge difference between natural and synthetic hormones).
I did not notice any real changes at first. Then after being on them for a month and a half, I started experiencing migraines, which prior to this, had only had a couple times in my life. They were so bad I couldn't get out of bed on those days which I had them. They were rotten. My hot flashes got ever-so-slightly better but were still wretched. Mood-wise there wasn't much of a change either. I connected the migraines to the estrogen, which isn't too uncommon when taking synthetic hormones. I eventually stopped taking the hormones because of the migraines. I had always had acne problems due to the PCOS. However, it only got worse after the surgery. Much worse.
Meanwhile, I was as rotten as a person could be. Mean, angry, hateful, so very vile and guttural. It felt as though I couldn't control the anger I felt. And, I've always been a very outspoken person, who doesn't care what others think about me at all. I tell it like it is, no sugar-coating. So adding all of this anger and hatred to the mix made me a pretty mean person. It didn't matter who you were, a family member, a stranger, person of authority, no matter...I told you where to stick it...hard. I basically became unbearable to be around. I was no longer working, and there's no way I could have because I probably would have eaten peoples face like Hannibal Lecter. It was just a very odd time. My OB/GYN was unconcerned.
The major side effect
It was only a few weeks after the hysterectomy, I was at an amusement park with my family. Out of nowhere, I had a grand mal seizure, something I had never experienced in all my life. At the hospital, they couldn't find a reason. It was thought to be a one-time thing.
A couple weeks later, I was making dinner, taking the chicken out of the oven, and the next thing I know, I'm waking up on the kitchen floor, oven open, blood all around me. I had had another grand mal seizure. Again, the doctors at the hospital couldn't find a reason for the seizure. Soon after that, I was having grand mals regularly. I was diagnosed with adult-onset epilepsy. There is no history of epilepsy or seizures in my family. I was also having petit mal or partial seizures, as well as absence seizures (looks like I'm just staring into space, but my eyes are locked and I can hear what's going on, but cannot respond). Those generally only last about 30 seconds. I was put on a seizure med called Keppra. Side effects of that drug are small, nearly non-existent for me, unlike other seizure meds like Phenobarbital or Depakote. They controlled the grand mals pretty well. I was only having them about once every 6 weeks or so, breakthrough seizures.
After seeing several doctors, including a neurologist, it was concluded that the total hysterectomy, had caused me to develop epilepsy. This isn't all that common for younger women who have total hysterectomies, but has occurred. The extreme and abrupt hormonal changes, a shock to my body, is thought to be what triggered the epilepsy, something I would otherwise not have developed.
The epilepsy became quite the handicap for me for a while. I could sometimes tell before I was about to have one, but didn't always have that luxury. I was afraid to leave the house for fear I'd have a grand mal, and fall and injure myself. I have a service dog now, her name is Josephine, and she's a seizure alert dog. She lets me know before I have a grand mal, so I can lye down no matter where I am. And have done just that several times. It may look silly, seeing a woman lying down in the grocery store, but hell, it beats falling and severely injuring myself, or even dying from an injury. If you'd like to hear more about the story of my service dog Josephine, and my epilepsy, feel free to check the hub I wrote entitled; "Epilepsy and the Service Dog", that I had written back a couple years ago.
The epilepsy is now under control to where I only have grand mals about once every 2-3 months (knock on wood). Usually when I'm very tired or very stressed. I have petit mal seizures more often, but they aren't terribly bothersome, and I have the absence seizures daily, but again, those aren't very bothersome either.
The epilepsy was in many ways, the worst "side effect" of the hysterectomy. It was completely unexpected and extreme. I deal with it and have adapted very well to it (mostly because of my service dog Josephine). I cannot drive, I have more frequent migraines as a result of the epilepsy, and worst of all is my memory loss. It's both short-term and long-term memory loss. Much of that is the epilepsy, though some of it could be caused by the hysterectomy, according to my neurologist. I have zero memory of the first 2 years of my son's life. I tell someone something, then the next day tells the story all over again, not remembering I've already told them the story. It's obnoxious to everyone else, but I chuckle find the humor in it.
It's now been over 6 years since I had the total hysterectomy. My body has started to get used to the lack of hormones, and though I'm still sharp-tongued (I always will be), I'm more of a Dr.Gregory House (House) than a Chucky (Child's Play) these days. My anger has become manageable, and though I have a smart-ass mouth, and am the first to speak up and tell it like it is....it takes quite a bit to really get me angry. My family will be the first to tell you how very nasty I became right after the hysterectomy, and how that's changed now, 6 years later.
I'm tired a lot more than I ever used to be. I physically feel like I'm 85 years old. My bone density has greatly decreased, and I need to take calcium pills daily. Your bone density decreases with time, as your estrogen levels drop, through menopause. I will likely have osteoporosis by the time I'm 45 years old. I definitely do not feel like I'm 31. I haven't felt my age since the hysterectomy, it seems as though my body has aged decades since. I have very little interest in socializing, where I used to enjoy going out, spending time with friends. Obviously, I can no longer have children, and only got to have one, and so very much wish I could have at least one more. The lack of estrogen brings with it lots of side effects and consequences. My acne is still really bad, and I now have some scarring from it. Luckily, I can at least cover it to where you can't see when I wear enough makeup. But without makeup....eeek. The hot flashes have greatly diminished, to where I only have about 4 a day, which is much more manageable.
Also, I was going to donate a kidney to a man who has been waiting for one for 20 years now and had been on dialysis for quite a few years. He was HIV positive, and not high on the donor list. I met him through an organ donation website and chose him because of his HIV status, and length of time he had needed a kidney transplant for. A purely altruistic donation of someone I had never met. After initial testing, and finding out I was a good tissue match as well as blood-type match, I traveled to where he lived, to get some final testing done, and meet the doctors who would be doing the surgery. Things were progressing well and most of the doctors on the donation panel had felt I was of good enough health to donate. An altruistic donation (as opposed to donating an organ to a family member), must be approved by a panel of doctors. You must be not only a good match of tissue type but also must be found to be of good emotional and psychiatric health, as well as of course, physical health. The very last doctor I had to meet with to approve this kidney donation, had decided that because of the hysterectomy (and not the epilepsy), he was not comfortable with leaving me with only one kidney. A hysterectomy does not mean you cannot donate an organ, but some doctors feel the effects of an absence of estrogen over time, could possibly have long-term effects on the kidneys. I felt awful. The gentleman had high hopes of this donation working out after so many had not. I wanted to give him my kidney, and just felt it was the right thing to do. But ultimately, after all the testing, paperwork, doctors visits....it was decided that it wasn't in my best interest. Unlike the donation of an organ to a family member, the donation of an organ in an altruistic situation is very different, and the health and well being of the donor is extremely important, and looked at first and foremost, over that of the person receiving the organ. So my hysterectomy has even farther-reaching consequences than that of just myself, and my family. It even affected a total stranger, in an unconventional way.
There are of course, positive effects of my hysterectomy. First and foremost, the reasons for the surgery, being the endometriosis, the Polycystic ovarian disease, and the leiomyoma (uterine tumor), were, of course, wiped out. I have no abdominal pain from endometriosis, no pain from PCOS. No need to worry about a uterine fibroid tumor growing uncontrollably in my abdomen. Since the cervix was also removed (which is common to have removed during a hysterectomy), I have no concerns of ever having cervical cancer, a cancer that is taking the lives of more and more women over the past decade. For that matter I will never have the concern of uterine or ovarian cancer, two other cancers that combined, take the lives of over 25,000 women in the US each year, and that number is rising. That's a huge load off a persons back. And I suppose, if you don't want anymore children, or don't want any at all, no concerns over pregnancy, (though keep in mind the risk of STD's, though a little bit lower, are all still completely possible to contract).
Then there's the more seemingly trivial, but not altogether unnoticed advantages of having had a total hysterectomy. I do not need a yearly pap-smear. No uterus, no ovaries, and no cervix....so no need for pap-smears regularly like with most women. It's recommended that I need one only every 5-7 years, and even then, the ordeal is much less annoying and uncomfortable as when you have all you're female reproductive organs intact. Then, of course, there's the fact that I don't have a monthly period. That encompasses a whole host of perks. No granny panties. No blood-stained undies, or blood-stained pants. Absolutely no need to ever buy another tampon or pad (just put that money toward your shoe collection). No cramping every month, no PMS and monthly hormonal mood-swings. No worry about "that smell" when you're on your period. No monthly boating or constipation. No discharge EVER, no yeast infections. You know, all those things that have ever made you say "guys are so lucky to never menstruate". I will say it's really great to never ever have to think about those things....ever again.
And a completely unexpected positive side effect was the weight loss. I've never been heavy, I've been very lucky in that regard, a high metabolism. I was 5'6, and my weight did slightly fluctuate, especially after I had my son, at my heaviest I was about 140 lbs (not including my weight during pregnancy). The way I'm proportioned, I looked thinner than I was. But after the surgery, the weight literally melted off. I never tried to lose weight, no diets, nothing. It just kept coming off from about 2 weeks post-op, until I was about 118 at my lightest, which technically for my height was slightly underweight, but I think I looked great. But, 6 years later, my weight has evened out and for the past 4 years or so, I've remained at around 125 lbs consistently. (Though I could definitely use some toning). Usually, menopause has the exact opposite effect on the metabolism. Many women gain weight after they go through menopause. That's true for those who go through it naturally, or through a surgical hysterectomy. However, the PCOS does tend to contribute to women being overweight. I was lucky enough to not have a real weight problem despite the PCOS, but obviously, when the ovaries were removed and the PCOS gone, I lost that "extra weight". I'd be lying if I said I didn't enjoy that unexpected side effect. Especially considering I didn't have to do a thing to lose the weight.
Becoming more commonplace
Women in their 20's having hysterectomies are uncommon. Women in their 20's having total hysterectomies are even more rare. It's not common to see in women in their 30's either, even 40's. But it's happening more and more. Between a more proactive medical community, and a higher incidence of cervical and ovarian cancer (much of that due to STD's...cervical cancer is most often caused by an STD called HPV-Human Papillomavirus), we are seeing more and more young women having hysterectomies done, both partial and total.
It should be a last resort for a woman under 40. Having diseases and conditions that require a total hysterectomy isn't common. But it does happen. Drug therapy and other surgical intervention should be tried first, and often have good results. Should your OB/GYN recommend a hysterectomy for you, whatever your medical problem is, DO YOUR RESEARCH. Most especially when it's a total hysterectomy. Having a partial hysterectomy (taking just the uterus but leaving one or both ovaries), and having a total hysterectomy, are two very different things. Having both ovaries taken out, puts you into complete menopause overnight. Keeping even one ovary will retain it's hormone-making ability, and keep you out of menopause. Don't underestimate the impact hormones have on your entire body...it's extreme. Do as much research as you can first, and talk to others who have had a hysterectomy at any age. Never go into a hysterectomy without taking time to think it through and do your research first. Also, a second opinion is something I highly recommend.
If you do need a hysterectomy and decide it's the choice you must make, I don't want you to feel as though your life as a female is over, it's not. My feminine identity is not, and never has been dependent upon my internal reproductive system, nor my ability to have children. I've always been a very confident person though. But the consequences are profound. Never go into it lightly. And remember that everyone is different. My experience is not going to be the same it will be for anyone else. Each persons body reacts in its own way, and no two experiences are exactly alike. I wanted to share my experience on a subject I've become very experienced and knowledgeable in. An experience from an unusual situation, a woman in her 20's having a total hysterectomy. Please feel free to ask any questions you might have. I'm definitely not shy.