Lisa’s Hysterectomy Story

Date of Hysterectomy: December 24, 2012
Type of Hysterectomy: LAVH with BSO
Age at surgery: 45
Location: Central NY

I suffered with horrible periods and pain since I was a teen. By the time I was in my 30s, several gynecologists and general practitioners told me that was just how it was for me. They basically said some women have it rough, and I’m one of them. However, I knew many women who weren’t bedridden or bent over in pain for several days a month. I began to get suspicious. By the time I was 45, my periods had become erratic. I would have two in one month, skip a month, bleed for two days – basically there was no pattern. Then I started bleeding even more than what I had come to accept as normal. I would randomly bleed through two tampons and a maxi plus pad in less than an hour. I was afraid to sit on people’s furniture.

The pain was getting even worse. I realized that I had not had sex with my husband in nearly a year because it was too painful. He reminded me that before that, it was usually more than a month or two between our sexual encounters. I realized that I had lost most of my social life and was no longer active. I had developed routines so that I had to move as little as possible. I knew I couldn’t go on that way. I told my GP, and I think he finally realized that it was more than normal aging issues. He recommended a new gynecologist for me. I went to see her, and I told her the story. She did a pap smear and a pelvic exam (I was barely able to stay on the table it was so painful) and found nothing wrong. At that point I stood up and practically demanded more tests. I didn’t even realize I was crying and yelling at the same time. She told me to stop crying and calm down and agreed to do a uterine biopsy and and a transvaginal ultrasound. I had both tests, and honestly both hurt more than I thought possible. I remember the look on the ultrasound technologist’s face. She went from smiling and friendly to quiet and somber. I asked if she saw something wrong, and she told me she only does the tests, the doctor interprets them. Then the oddest thing happened.

My gynecologist called my on a Saturday afternoon. She told me that she had reviewed my ultrasound, and had made an appointment for me to meet with a gynecological oncologist on Monday. She told me my ovaries were greatly enlarged with complex masses surrounding each. She had run a CA-125 test and told me my numbers were high, and she suspected ovarian cancer. She said that in her conversation with the gyn/onc, they both believed a hysterectomy would be necessary, and soon. I was stunned. I sat on my bed with my mouth hanging open, and was only able to say, “uh-huh” and “ok.” By the time I got to the gyn/onc’s office, I had done a lot of research, and brought a long list of questions. I talked with my gyn/onc, and he answered each of my questions. He told me my left ovary measured 20cm, and my right measured 13. I looked at my belly and wondered how they fit in there. I asked if when he got inside if he would be able to tell whether I had ovarian cancer. He told me maybe.

I just told him that if possible, I wanted to save an ovary. I was terrified of surgical menopause. I asked about chemo and radiation, and he gave me some information, but told me that we would cross that bridge when we came to it. He wanted to do the surgery at the end of that week, but I was two exams away from finishing my graduate degree. I talked him into waiting another week so I could finish my final exams.
I have no idea how I finished my exams. I was in so much pain without the handful of ibuprofen I took each day which he told me I had to forego for at least 5 days before surgery, but more days would be better. I couldn’t think about what I was writing, I was obsessed with my giant ovaries. My surgery was scheduled on the first day available after my exams. I took my last exam on December 21st, and my surgery was scheduled first thing on Christmas Eve.

I was so busy preparing for exams, I hardly did anything to prepare for my hysterectomy. I tried not to think about it. After my last exam, I watched a video of a LAVH/BSO. I was fascinated, but I’ve always wanted to know everything that is going on. With the way I had been treated, I had developed a distrust of doctors. I wanted to be in charge as much as possible. I was strangely calm the night before my surgery. I think I was just hoping for answers and relief. I did not have to do a bowel prep. I just had to stop eating and drinking at midnight.

The next morning I was at the hospital at 5:30. I wore sweat pants, a baggy T-shirt, and a sweat shirt. I was told to undress completely and put on the hospital gown. I was allowed to leave on my acryllic nails, and I noticed it was odd that the polish matched that ugly gown. I couldn’t decide if that was a good or bad omen – I realized I was getting superstitious. I was nervous. The nurse started an IV, did a pregnancy test, and asked lots of questions. They wheeled me down to OR waiting and my husband was allowed to wait with me. They asked even more questions. I met the anesthesiology staff. I told them I was nervous, and that during my last surgery (for my back), I felt pain in my chest when the anesthesia started. The nurse promised me, I would not feel that with her. They gave me some versed to help me stay calm. I told them I had had general anesthesia several times before and had almost no bad effects from it. I declined the patch for nausea as I had never experienced it. Another nurse came in and told me to describe my surgery to her to make sure I knew what I was doing and sign consent forms.

I wrote, no oophorectomy if ovaries are not diseased in the margins, just to be sure they remembered. My period was due and I was worried it would come. They told me it would not be a problem. My doctor walked in and said yes, if it comes, it will be the last time. He also reassured me he had done hundreds of hysterectomies like mine. A nurse said I was in good hands. I went under while listening to the anesthesiology nurse give me career advice based on what her daughter had done. No counting backwards like before.

I awoke in recovery and immediately asked the nurse if they had finished the surgery. She said yes. I asked if I had ovaries, and she said no. I was bummed. I asked if I had cancer, and she told me I would have to wait for my doctor. In my mind that meant, “yes.” I sucked on ice chips, and when I asked for something for pain, the nurse took care of it immediately.

Eventually they took me back to my room, and I found out I had been in surgery for hours, not just a little over an hour like I expected. I remember being so thirsty, but they would only give me ice chips. Finally the nurse gave me some ginger ale. I sipped it, and didn’t feel any nausea. I told her I was hungry and she gave me crackers. I ate them, drank more ginger ale and then felt pain where my ovaries had been. She unhooked my IV and gave me two oxycodone. That took care of the pain.

My doctor came in, and I was so scared about what he would say since I was under so long. He told me he believed there was no cancer. Instead what he found was a lot of endometriosis. No one had ever suggested that I might have endometriosis. My ovaries were so enlarged because they were surrounded by endometriomas and scar tissue. He told me he could not save either one because they had basically become “mush.” My uterus was not enlarged but it looked red and unhealthy. (Pathology found mild adenomyosis).

The surgery had taken so long because the doctor had taken time to excise endometrial implants from my bowel, bladder, and body cavity. He said my cervix was peppered with implants explaining why sex was so painful. At the time I didn’t know how lucky I was that I had a doctor with the surgical skills and know-how to excise endometrial implants. A lot of doctors don’t have those skills. I asked for an HRT patch, and he told me I had to wait for pathology to come back. He asked if I wanted to go home that day, and I said, “Please.” He said, I had to have my pain under control with oral meds, urinate on my own (that’s when I noticed I didn’t have a catheter – it was taken out before I went to recovery), keep down solid food and walk around the nurses’ station. He told me to come see him in 10 days. After he left, I went to the bathroom with the aid of a nurse and was able to urinate, though it burned. I told her that since I was up, I wanted to walk.

I did two laps around the nurses station before I was exhausted. I asked for something more for pain, and received medication right away. After the pain faded, I ordered a turkey sandwich. I was starving. I ate it all. About an hour later I walked around the nurses’ station again, and asked if I could go home. They discharged me, and handed me a prescription for painkillers and a bunch of papers with directions. I was home before 8PM. I was so happy to get in my own bed.

I would describe my recovery as fairly normal. It wasn’t really easy or difficult. I think the worst part began with the hot flashes and nightsweats I had the first night. The entire next day, I had near constant hot flashes, and each night I awoke covered in sweat, more than once. I cried randomly, I was grumpy and yelled at people for walking too loud. I can remember standing barefoot in the snow to cool down, or holding the freezer door open to cool off my face. Just as I imagined, surgical menopause was awful. I couldn’t sleep. The CO2 gas pains were also miserable for a couple days, and having the first BM was not easy. Fortunately I had to give me hints and cheer me along.

I remember that passing gas was worthy of claps from my family. That seems odd now, but at the time it made sense. I was able to stop narcotic painkillers in less than a week, but I continued with ibuprofen. I had lost all desire to have sex and was surprised that before I was a week out of surgery, my libido was really high. I began to worry about whether I could enjoy sex since I finally wanted to have it again. I drove at day 10, right after my first post-op appointment. My doctor started me on an estrogen patch (I was so happy). He cleared me for baths with no bubbles or bath salts. After that, my biggest challenges were fatigue and getting my family to understand how overpowering it was, trying to deal with the mood swings and insomnia even with an estrogen patch – and it did help some.

I also suffered with swelly belly. My doctor didn’t tell me about any of that, so I was glad I had HysterSisters to reassure me, all of it was a normal part of healing. My doctor released me for everything at 4 weeks. I knew I wasn’t ready to get back to my normal life, and my recovery seemed on par with the sisters on my recovery thread. I didn’t try sex until after six weeks, and then waited until after 8. After that I was fortunate in that sex was much better than before. I slowly worked my way back to being more active, but didn’t feel comfortable shopping or doing housework until I was about 2 months post op. At 10 weeks, I moved across the country. I flew while my family drove. I lived alone for a while until my family was able to pack up and join me. I thought that would be difficult, but it was good for me because I was able to learn to rely on myself again.

In general my health has improved since my hysterectomy. I no longer worry about knowing where the bathroom is at all times, and I wear what I want, including light colors. I am glad I had the hysterectomy because my life had become so small and miserable. I was missing so much. I’m happy that I can now do all the things I couldn’t. However, I do have to make sure I eat healthy.

Since my hysterectomy, I was diagnosed with interstitial cystitis, and I have had IBS for years. I have to eat so as not to aggravate those conditions. I found out I had two melanomas after my hysterectomy after a HysterSister told me that women with endometriosis are more prone to melanomas, I went to the dermatologist. On occasion I wish I hadn’t needed a hysterectomy, but that gets me nowhere. If I had the same decision to make, I would still have the hysterectomy, except maybe 10 years sooner and hopefully saved at least one ovary. My biggest challenge has been getting my HRT balanced. For me it’s been a rough road. Right now, I think I have an answer, and I hope it stays that way. If it doesn’t, I will keep on searching.

I would advise another woman to join as soon as she begins to consider a hysterectomy. I would encourage her to post questions and read articles and watch the videos. I would tell her to keep talking to doctors until she found one who listened to her. I would tell her to get at least a second and preferably a third opinion. Most importantly, I would tell her to educate herself about her diagnosis, treatments, and prognosis, and not to limit her education to what Google provides. I would tell her not to blindly trust any doctor as they are not all equally skilled or trained. I would remind her that even if a doctor is a great obstetrician, she may not be a good surgeon. I would tell her to ask questions until they are satisfactorily answered. Finally I would tell her it’s a big change and a process. It is not something to rush into and healing cannot be rushed. I would tell her to learn to practice patience and keep her mind open and remember that she is not alone.

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