Original Version: February 1978
2007 was a bad year for health issues in our household. Leslie started off the year on January 3 with her car accident (not her fault), and we got to know the Emergency Room over at Ohio Valley Hospital. Jim's had some annoying neck pain, so he's been over there for tests. And, since January, I had chronic pelvic pain. I was diagnosed with ovarian cysts in March. I'd had ovarian cysts removed previously in 1978. It turns out ovarian cysts are very common in DES daughters; my sister and I, both DES daughters, have had them twice during our lifetimes (so far).
Updated: July 2007
Updated Again: July 2012
2012 was a rotten year for me healthwise. Cysts came back big time. So...this essay is a comparison of how ovarian cyst surgery was done in 1978, and how it was done in 2007, and if the process changed any in 2012.
What follows is probably way too much information about medical conditions, so don't say you weren't warned. Or just skip to here, where I talk about how the surgeries were different.
1977-1978: In about October of '77, I had a routine gynecological check-up and was told I seemed to have some sort of growth near my left ovary. The doctor said he thought it was a cyst, and told me to get a sonargram. A few weeks later, the sonargram confirmed the cyst. The doctor prescribed surgery, and I wound up scheduling it for my 21st birthday.
The cyst was mostly asymptomatic, though I was working a sales job where I stood up most of the time, and I had occasional dizzy spells. That might also have been from stress over the surgery, as I'd never had surgery any more serious than a tonsilectomy before.
The afternoon before surgery, I went to Magee Women's Hospital and had prep done - lung X-ray, blood tests, more exams. As Magee was a teaching hospital, I had my pelvic exam observed by a bunch of interns, which was kind of embarrassing. I was a little concerned about all the consent forms I had to sign, because they basically said I was signing away all future reproductive rights if they found cancer. I couldn't not sign, but reminded the doctor I did have hopes of having a child some day.
I think I was in one room pre-surgery, and was in another room post-surgery. Unlike almost everyone else on the floor, I felt fine. I remember talking to the woman across the hall who was scheduled for a late term abortion the next day. She was very sick and had several small children at home already (she'd pretty much gotten the "having this baby will kill you" talk). Whenever I hear about medical procedures getting politicized, I think of her.
After various other surgical prep in the evening, they gave me a sleeping pill and I slept pretty well. Early in the morning, they took me into surgery, and I don't remember anything until I woke up in the recovery room. I think I was told that everything was OK, and I'd just had a cyst. I was in recovery for a couple of hours, then brought to a new room. I don't remember too much about the first day, other than Jim and a friend from our club, Dave, stopping by. The reason why Dave could stop in so soon after surgery was because he was a student minister; clergy could pretty much come and go in the hospital as they pleased.
Next day, I was detached from various tubes and encouraged to walk, which I did. I remember being extremely sore and unsteady walking, but I practiced faithfully. The surgical floor was near the obstetrics floor, so I'd pass by the nursery and look at the babies. Periodically, someone would check my dressing or take my temperature. Meals included soup and Jello (which I avoid). I don't remember what I was given for pain; I only had a standard IV for hydration, and, periodically, a nurse would shoot various drugs into a tube in the IV. Twice a day, I'd get a vitamin K shot in my abdomen. I learned you can't cough or laugh after you have abdominal surgery. Let me correct that - you have to cough, but you have to cough carefully. It's important to cough to keep your lungs clear so you don't develop pneumonia. But you need to avoid coughing using all the muscles in your abdomen.
Seeing my roommate's condition spurred me to keep walking. My roommate was much older than me and had to have a total hysterectomy. She had her surgery the day after I did. I never saw her get out of bed over the next few days, and she wound up getting a special breathing apparatus to help keep her lungs clear. I'm not sure what happened to her afterwards, but I wouldn't have been surprised to learn that she didn't recover.
So after about five days of hanging out in the hospital, I went home. A nurse removed the top layer of stitches (this was a "bikini scar" - horizontal) which kind of tickled in a funny way. I was still a little sore, and getting in and out of bed at home was really tough (our bed in those days was very low). As my job involved standing and carrying things, I couldn't go back to work for a month, even though I was only working part time.
2007: Early in January, I started having pelvic pain not related to my period. This was very depressing, as my periods had been getting very painful, and to be in pain almost every day was annoying. And it was yet something else to disturb my sleep. Between the move and everything else that went on last year, I hadn't seen a gynecologist in nearly two years. Luckily, it turned out there was one nearby, and I arranged to see her in early March. Dr. Rosado thought I probably had a cyst. "Been there, done that."
She sent me for a sonargram. Sonargrams haven't changed a whole lot over the last 30 years, except for the addition of the "transvaginal probe." Think vibrator-like device on a wire, that provides a slightly different angle on the pelvis. The sonargram tech said she found at least three cysts near the right ovary, one uterine fibroid, but nothing that looked particularly bad (tumors tend to show up as dense spots on sonargrams, while cysts are more diffuse). They said I had to go back for a follow-up sonargram in about two months, to make sure the cysts didn't just go away. Apparently, in some cases, they do.
So I arranged for a follow-up test and waited. The pain wasn't all that bad most of the time, but it was chronic. I wound up having to take Aleve about twice a week when it got particularly bad. The cysts showed up again on the May sonargram. And then I was told it might be another six months of wait and see, since they weren't getting any bigger.
My gynecologist sent me for additional tests to make sure that we were only dealing with cysts. Additional tests sometimes make some straightforward things not so straightforward. And, after the second sonargram, I started having pain on the left side as well as on the right. But the good thing about the extra tests was that they, temporarily, put me on the fast-track for surgery. I was hoping to have a laparoscopy, but my doctor said I'd need a full incision as I was now having pain on both sides.
So surgery was scheduled and I went for pre-op tests - a chest X-ray, an EKG and blood work. But then other insurance issues, and my doctor's busy-ness (she's an OB/GYN and a surgeon) kept delaying the surgery. In the middle of all this, I saw Sicko. I was very relieved my insurance company did not appear anywhere in the documentary! I can deal with being jerked around, and even delays, both of which were very annoying, but it's not nearly so annoying as ultimately being denied care.
Finally, surgery was confirmed by the insurance company, the doctor and the hospital. My doctor tends to be fairly conservative, and I did say I'd prefer to have the bare minimum removed. She thought I'd have to have one ovary removed because it looked like some of the cysts were actually in the right ovary. But unless she saw major problems (like cancer), she thought it was unlikely I'd have anything else beyond the cysts and an ovary taken out. Being older and having had a child, I didn't feel quite as uncomfortable about signing the surgical permission forms this time. I also felt better because my gynecologist and my surgeon was the same person, rather than being two different people. And I think it helps to have a woman do gynecological surgery, because I suspect they'd be a little more conservative in this area than a man might be.
I spent the night before surgery at home, not eating, and drinking the ever popular "Go-Litely" (if you've had a colonoscopy, you know the drill). We had to get up at 4:30 the next morning, so I could get to the hospital by 5:30.
The OB/GYN floor at Ohio Valley was new and very quiet. I had a room at the very end of the hall; at the time I thought that was because there were many patients there. However, the hall was almost empty. All the rooms appeared to be private rooms, which was very nice. I'd never had a private room in a hospital before.
Two nurses came in to help get me ready for surgery. I have tough veins to find, and I hadn't been allowed to drink anything after midnight. So I was dehydrated, which makes the veins even harder to find. Getting an IV line inserted is tougher than just drawing blood, and the nurses tried three times before giving up.
You also have to keep repeating who you are, what your doctor's name is and what surgery you're about to have. I remember meeting with the anesthesiologist and talking to him briefly. My doctor stopped in to say hi, and then I was wheeled off to surgery. They finally got the IV in and I was out pretty fast after that.
I remember waking up while I was still intubated, which was psychologically tough for me to handle. I remember my doctor saying everything was fine, but was too upset by the breathing tube to be calm at that moment. I was taken to recovery, and went through about the longest 10 minutes of my life (I have a terrible gag reflex). Finally, they decided I was awake enough to be extubated, which was tough but fast.
I was only in recovery about an hour, and I was much more comfortable once I was breathing on my own. There was a guy to my left, and at one point two heavily gowned nurses brought a patient with a staph infection (a jolly thing to hear in a recovery room!). Before I left recovery, Dr. Rosado gave me the good news in great detail - the cysts weren't in my ovaries at all, so she didn't need to remove either ovary. But the right Fallopian tube was filled with fluid and twisted, so she removed that tube and the cysts. Some of my pelvic pain had been caused by endometriel adhesions, most of which she removed. It turns out I have endometriosis, which shouldn't be a huge deal since I don't plan to have any more kids and menopause generally stops endometriosis. But that does help to explain why I have such bad menstrual cramps every month.
Back in my room, I just laid back and watched TV. I called Jim (I'd foolishly only given the hospital his work number and not his cell phone, which meant they couldn't get through since he was always in phone meetings). He was relieved everything was fine and went around notifying folks (I'd left my cell phone home; it generally didn't work in the hospital anyway).
This time, I was on a morphine drip for pain relief. It's the sort of thing that administers morphine in your IV, but if you feel particularly uncomfortable, you can press a button and get a tiny hit. I can't say morphine did anything for me other than suppress the pain and give me an odd sense of time. So I was in bed all of Friday. Jim and Leslie came to visit in the evening; the only other patient on the floor went home that afternoon. It was very quiet. But I slept very poorly. The ventilation was very noisy, and I was in some plastic leggings that inflated and deflated to help prevent clots. They also helped prevent sleep!
I finally fell asleep and woke up with a little headache and general sinus discomfort. When a nurse came in to take my blood pressure and temperature early in the morning, I asked if I could have some saline nasal spray (remember, this isn't a medicine). She said the doctor would have to order it (sigh).
Dr. Rosado stopped in around 8:30 or so, and she said I was looking good enough that I could get generally detached from bags and IVs and the like and could start to eat again. I told her my sinuses were acting up, and she said Jim could bring in saline spray and Pseudofedrine. She also removed my dressing and said everything looked fine. This time, I have a vertical incision a few inches below my navel. With staples. Now, they take the dressings off early, and you have to look at it to make sure it's not infected. I don't like to look at incisions, but take a quick look at my reflection (I know, this is silly, but...) when I'm in the bathroom. So far, it looks uninfected. The staples come out on Thursday.
Once off the IVs, I took Percoset about every four hours. It does a good job suppressing the worst of the pain. There was some incision pain, but it was minor. And I've found walking and moving around much easier than last time. Not sure if it's because I knew what to expect this time, or if the pain medication is better at relieving the pain while leaving you reasonably steady on your feet. Or maybe a vertical abdominal incision is ultimately less painful than a horizontal incision (which gives better cosmetic results). However, they do tell you not to drive while you're on Percoset, and since I'll be on Percoset for about 10 days, I can't drive until late July.
The main weird side effects I had post-surgery had nothing to do with the surgery itself. My blood pressure has stayed high throughout my hospitalization, to the point that they couldn't use the standard automatic blood pressure cuff on my starting on Saturday night. My right arm still has bruises from the automatic-inflate cuff. They started using the old fashion hand-pump pressure cuff and got results that were high. My doctor prescribed blood pressure medication, which brought my blood pressure down in about 12 hours.
Worse than that, after Dr. Rosado said I could go home Sunday morning, I developed a horrible migraine. I hadn't had a migraine so bad in a few years (for that matter, I hadn't had any kind of a migraine since our cat died (I was very allergic to her)). Since my blood pressure had been so erratic, I couldn't take a Pseudofed (my migraines are always related to sinus problems and Pseudofed helps). They gave me Coricidan, and I sat with Jim my darkened room for about an hour until the worst of the nausea went away and the headache diminished slightly. Hot compresses also helped some. But I was surprised that the worst pain I had during the whole hospitalization was from the migraine, not from the surgery. And I still don't quite understand why the Percoset did almost nothing for the migraine.
About an hour after Jim arrived, I was ready to go home, but I was so uncomfortable that I sat with my eyes closed and my head in my hands when my doctor stopped by to say so long. She said I could stay longer if I needed to, but I reminded her that since I thought the hospital air was causing the migraine, I'd rather go home. After an afternoon of sitting on a chair in the family room with hot compresses, the headache finally went away at about 4pm.
Now I'm three days post-op, I feel a little dazed and slightly in pain, but I wound up taking a walk around the block twice today (this "block" is nearly half a mile). Today I'm treating myself to watching all of the LOTR movies and doing some minor Web catch-up. I think I'm writing reasonably coherently (maybe a bit much on the "TMI" side, but I did warn you).
2008-2012: The ovarian cysts came back about a year after the second surgery. Since I assumed I was getting ever closer to menopause, I felt I would wait them out this time. I kept changing gynecologists because they kept telling me the same thing - more surgery. After 2008, I didn't have any major trouble with the cysts, so I had a sonogram every year to make sure they didn't grow. Gradually felt a little worse over the winter of 2012 with more pelvic pain. On March 12 (Jim's birthday), I felt awful, with severe pelvic pain, diarrhea and a urinary tract infection all at once. I went to a doctor for some tests and had to choose another new gynecologist who could see me that week. I was miserable and even spent a few days on the couch or in bed, not really doing anything than trying to make it to the bathroom. The new gynecologist, Dr. Rock, sent me for tests. A cyst we'd been watching for four years had grown from 3cm to 12cm over the last year.
And that meant surgery.
I did decide to defer the surgery until after a long-planned trip to Alaska was over, as sometimes it can take longer than 2 months to be fully recovered from a hysterectomy. This turned out to be OK as the pain/illness from March was much better in April, May and June.
July 2012 Surgery
I had a complete hysterectomy on 7/12. I had other issues in addition to the cysts, and since I was 55, I was in agreement with my doctor that I needed to have one - that waiting for menopause to finish wasn't going to work. The surgery went pretty well, though it was more complicated and I was under anesthesia for about 4 1/2 hours. I was very nauseated when they woke me up (and, luckily for me, they had extubated me before waking me up), muttered "nausea" and they gave me something for the nausea right away, so I didn't throw up.
As I've lost over 20 pounds since 2007, walk more, eat better, and take a Benicar every day, my blood pressure was very well controlled. No BP spikes this time.
I brought saline spray for my nose and used it frequently once I was in my room after surgery. I also had arranged for a standing order of anti-migraine drug (probably Compazine) that I could take if I developed one. I did have mild sinus discomfort about 2 days post-op and a little headache, but no migraine!
Getting over a hysterectomy is more involved than getting over a cyst surgery. I'm still walking slowly, but I've generally had less pain than in previous surgeries, which seems counter-intuitive. 2 1/2 weeks post-op, I stopped taking 200mg of Ibuprophen at night.
Lost another 5 pounds since the surgery. I was told to eat whatever I wanted to, including more red meat, so I've been doing what I was told. Just walking about a mile a day. Have a follow-up with my surgeon on 8/1, and should be cleared to drive at that time (which I was).
Felt well enough to go to Confluence about 2 weeks post-op, which I enjoyed even though I was in my room more than usual and left around noon on Sunday. It was just good to get out and see people. I should be more with things by Chicon.
Feeling pretty good and am walking about 2 1/2 miles a day. Incision is healing slowly but it is healing. Surprisingly little pain - a few twinges, that kind of thing. Felt better than pre-surgery on 8/6 as I spent the morning out running errands and had lunch out. Also bought myself a gift - a new knapsack as the old one is about 10 years old and is getting frayed. Today, I am tired, but have been doing some light housecleaning and watching Third Rock from the Sun DVDs.
The main differences for the same surgery between 1978 and 2007/2012 were:
- more pre-op testing
- more surgery delays (in 2007, due to insurance; in 2012, due to my wanting to wait until after the Alaska trip)
- better pain management in 2007 (the self-administered option is probably a good idea), tolerable in 2012
- many fewer nights in the hospital
- private room
- radically different wound management (removing the dressing after 24 hours; staples instead of stitches)
- woman surgeon (2007), male surgeons (1978, 2012)
- better hospital food in 2007 (Ohio Valley made a lovely BBQ pulled pork sandwich and didn't serve Jello!), but the one solid meal I had at UPMC Mercy in 2012 was a massive plate of carbs and the glueist oatmeal I have ever tried to eat
- in 2012 at UPMC Mercy, nurses came in every few hours to take your BP, which was less annoying than being on a autocuff overnight. However, I didn't sleep the first night after surgery in 2007 or 2012 due to being required to wear "pneumatic boots" to prevent formation of blood clots.
- The recovery room at UPMC Mercy had windows. Even though it was a dreary day out, having some connection to the outside world during recovery was very nice.
I also finally remembered to ask for my pathology report. I thought sure I also had fibroids, but I guess not:
- Adenomyosis (enlarged uterus - 231 grams (60-70 is normal)
- Proliferative endometrium (meaning I still could have had a period if I hadn't had a hysterectomy)
- Unremarkable cervix (with a tiny cervical opening)
- Abscessed left ovary
- Lutein cyst and follicular cysts of right ovary (the largest cyst was 6cm, meaning one had shrunk since the March sonogram found a 12cm cyst)
- Unremarkable Fallopian tubes (though the pathologist could only identify one tube and said the other tube was difficult to discern. One had also been partially removed in 2008).
July 2013: My Uterus - A Look Back