When it seems that I can’t fit anymore craziness into my life, life has a way of cramming in more. I mentioned in one of my recent posts that I was in grad school. What I didn’t mention was the I was to have a hysterectomy the beginning of September – 3 days after we moved from the house we sold and two weeks before my first term’s finals. Insane? Yes, I think so. People make hysterectomies seem so “normal” and nothing that should be so hard. But let me tell you, that is so not true. I have not had a good experience at all. My hysterectomy complications have really thrown a wrench into my life. I’m sharing so you don’t take the idea of surgery lightly when it’s offered to you. I apologize in advance for my babbling and grammatical errors…its’ been a long couple months.
First, Why a Hysterectomy?
I’ve had so many female issues….like many other ladies. Besides three c-sections (not my choice) that have left much scarring inside me, for years my periods have been heavy. I’ve had chronic anemia for at least 15 years (part of this may be due to gluten sensitivity but that’s for another post). This really wreaks havoc on one’s health.
A couple of years ago, things started getting worse. My flow started averaging about 14 days. My blood counts were very low. Chronically low in the 8-9 range for hemoglobin. For my non medical readers, normal is 12-16 for women. Hemoglobin is a protein on red blood cells that carries the oxygen. It’s a pretty big deal. Because my heart and blood pressure began acting up (low blood pressure and random fast heart rate), I opted to have the Mirena.
The Mirena is an IUD. It touts being this wonderful savior for women. Not so. Within a month I began having emotional issues that were not normal for me and weight gain. In fact, I gained about 15 lbs in one year. Since my 8th grade, I’ve maintained the same weight at about 120-125lb so this was very abnormal. After a few months, I began having strange pains in my right side. At the year mark, these pains got much worse. And then I began bleeding mid cycle. While the Mirena did stop my periods completely, something was not right.
I had seen the doctor a few times with complaints about the Mirena but the doctor assured me it wasn’t from that. I wasn’t convinced and wanted that sucker out. The darned thing ended up being positioned wrong – flipped sideways – and my cervix was torn getting it out. It was a very painful office experience.
Unfortunately my pain did not go away but instead got worse. Once the Mirena was out, my periods came back with a vengeance. I had an ultra sound which showed a mass next to my ovary which I was told we would “watch.” My only other options provided by my doctor was birth control or hysterectomy. In the past I had tried other things like changing my diet which only helped temporarily. With the years of pain and suffering I’ve been through, I opted for surgery. Physically and mentally, I was done.
My Hysterectomy
I had a laparoscopic vaginal assisted total hysterectomy with right salpingo-oophorectomy (tube and ovary out). I also had a cyst drained on the left ovary. According to my pathology report, my abdomen was thick full of adhesions (fibrous scar tissue) which adhered my uterus and bladder together and to my abdominal wall. The same was for my right ovary. Except my right ovary was loaded with cysts (to numerous to count) that did not appear on ultra sound. The mass that was reported on ultra sound was scar tissue. Rumor has it that the Mirena causes cysts…I’m starting to believe that to be true. Good news – I didn’t have cancer.
After my Hysterectomy
Since surgery, which was September 3rd, I have had two complications. One probably led to the other and there has been some sloppy medical management mixed in. On discharge from the hospital I was supposed to receive a topical, internal antibiotic prescription. I did not receive that because the doctor forgot to prescribe it which she admitted to during my 2 week post op appointment. Not being a gynecological nurse I didn’t know better. I even asked the discharging hospital nurse about antibiotics and she said I didn’t need any. Being very “out of it” surgical patient, I didn’t press the issue.
About a week after my surgery I began feeling better. But by my 2 week post op appointment I knew something wasn’t right. I was getting nauseas and had this general feeling of craziness. I can’t describe it any other way. My doctor attributed my sick feelings to me over doing it. She collected a wet mount of the internal vaginal incision and sent me home with orders to rest more…like a I wasn’t resting already. I contacted the office twice inquiring on my results as I was feeling much worse. My concerns were dismissed again and I was told I needed to rest. It had been miscommunicated that I did not have an infection. It took my doctor’s office 6 days to figure out that I actually did have a post op infection.
I took the prescribed antibiotic and began feeling somewhat better. The nausea continued to linger. I spoke with staff twice again about a follow-up appointment but was told that doesn’t normally happen and they “would check”. Since I was feeling better, other than nausea and lack of appetite (which could easily be from anesthesia), I didn’t push the issue.
On October 10th (almost 6 weeks after my surgery) I was sitting on the couch enjoying a lazy Saturday morning when I had to clear my throat. I coughed which caused some mild cramping. I didn’t think anything of it as I had already had twinges of pain here and there. Moments later I got up to use the bathroom. It was there that I discovered I was bleeding profusely. For those that don’t know, this is not good. I tried to clean up the mess while my husband started the car. While internal panic filled me, I maintained composure as I told my 12-year-old we were leaving to the ER and we’d be back in a few hours.
On the way to the hospital, I called both my doctor’s office (which took 45 minutes to call me back) and the ER I work at. In the 10 minute drive, I had already soaked through every layer under me including a towel. In the next hour, I continued to bleed very heavily. In my 10 years of ER nurse experience I’d never seen anything like this except when I worked in Labor and Delivery and the woman was hemorrhaging. Haven’t worked with the three nurses that took care of me that day for years, I could tell they were trying to mask their concern. I don’t remember much of this visit but the one thing that stands out was that I had an unrelenting nausea. No light-headedness, just nausea.
I was taken to the OR where they would repair my random total vaginal cuff dehiscence – meaning the entire incision from my first surgery opened up. Not only that, but I had an exposed artery which was the main cause for such chaos.
The next thing I remember was waking up as an inpatient with the doctor telling me that it was the worst case he had ever seen as well as the heaviest bleeding he had ever seen. That night it came to be known that my blood counts had dropped significantly. I was given 2 units of blood to stabilize me. 1 unit of blood is supposed to raise a hemoglobin between 1-2 points. My end result after transfusion was a hemoglobin of 8. My doctor instructed me that I was on the verge of organ failure without a transfusion. He also said that it was probably my post op infection as well as the use of cautery during the initial surgery that caused this to happen.
The next day I was discharged home to recoup and rest. That was almost two weeks ago. Since then I have done ok. Had a another bleeding scare which ended up stopping on its own. This has placed significant stress on me and the family. I am out of work for much longer than expected. I may even lose my job because of the time off which is also unpaid. We also had to back out of a home we had made an offer on.
Emotionally, I’ve been wreck. I was literally bleeding out. The worry of this happening again is difficult to control. If this would have happened in the night, the possibility of death would have been great. The anger at my doctor and her staff consumed me the first week. I’ve spent countless hours reading about these kind of cases. There are so many that are obviously medical error. Even did research on medical malpractice which was a difficult thing for me as I work at the same hospital and have had the same doctor for 10 years.
Did you know that 95% of all malpractice cases that are legitimate never go anywhere because the attorneys don’t think they will make enough money. And sadly, women, children, and the elderly are considered less valuable by the courts. What happened to me should not have happened but it seems I just have to live with it.
These types of complications in hysterectomies are rare, less than 1 percent. It is rare enough that there is limited research on how it happens and how to prevent from happening again. With laparoscopic surgeries the risk is a little higher at 1%. Most vaginal cuff dehiscence cases are not complete like mine. They are also normally associated with those who smoke, have diabetes, or do not follow the doctor’s orders of pelvic rest. None of these fit my situation. And sometimes these complications do not occur until several months after surgery. I didn’t even know this serious, life threatening complication was a risk!
The whole thing has been very frustrating and I’ve had to work through a lot in my head. It has forced me to stop my life completely. I am scraping by in Grad school after taking a week off. Homeschool has completely stopped. It has been a couple of weeks of tv, books, and sleep. I’ve lost 11lbs since my first surgery. It’s a good thing I had put on some unplanned weight but my muscles are literally wasting away. It will take me months and months to recover from this.
I have to remind myself to stay positive and be grateful for what I have. I’m alive, have an amazing husband, and three beautiful children. We have been greatly blessed by friends, family, and people I don’t even know with help for the kids and meals. The outpouring of help is amazing. I will forever be grateful to the medical team of nurses and doctors who helped me and to the two individuals who donated their A neg and A pos units of blood.
I don’t tell you this to scare you. I just want you to consider all options first. Hysterectomy complications are serious business, especially vaginal cuff dehiscence. Honestly, I’m not sure if I would have had the surgery if I knew about this risk. I may have let it fester for a while longer, trying other things.
Have you had a hysterectomy? Any hysterectomy complications? How did it go? Keep an eye out for another post on Hip Homeschool Moms for hysterectomy tips for the homeschooler.
Heather
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