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TAH/BSO - Didn't want to end up like my mother. TAH/BSO - Didn't want to end up like my mother.

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Unread 04-13-2000, 09:56 AM
TAH/BSO - Didn't want to end up like my mother.

My story really begins with my mother. I can't remember when she did'nt have problems with her periods. She never saw a doctor for them though and went through menopause thankful they were gone. Then she started bleeding again and at age 54 had a total abdominal hysterectomy for uterine cancer. The doctors felt sure they had gotten all the cancer. They were wrong. She died a year and a half later with cancer throughout her body, every vital organ had been affected. At the time I wondered how it could have happened. How could two well trained, experienced doctors have been so mistaken. Now I know. Endometrial Hyperplasia.
It's hard to say really just when my own part of this story began. But about four years ago I too began having much heavier periods. I say heavier because they had always been pretty heavy with lots of cramps, even moreso after my first son was born. They then became irregular too. Having another son didn't help. Conciving a daughter a few years later was almost impossible but we finally got our girl. Things seemed okay for awhile even with the periods being heavy and irregular, then I began having pain during ovulation (that is when I ovulated). I once even went to the doctor fearing I might have a problem with my appendix. He said no it was just ovulation but never suggested I see my OB/GYN about it. This is the hazzard of small town, old fashioned, country, GP's. We had moved an hour away from my OB/GYN and with the insurance we had at the time (Health Net)I couldn't see my OB/GYN anyway, it was too far and I hadn't sought one in our area. Then about four years ago the serious bleeding began with lots of clots. I knew then that something was wrong, this definately was not normal periods. Thankfully we had changed to a different insurance(Cigna)that alowed us to return to our old doctors in our home town which thankfully we were about to move back to anyway. Well it took a few tests but he diagnosed, and explained to some degree,Endometrial Hyperplasia. He prescribed Progesterone which helped some but not very much so we decided to do a D&C. He also put me back on the Progesterone. The first period afterwards was like the period from hell but after that they got much better for awhile. The only problem was the mood swings. Not only did I not like the crazy woman I had become but the periods were getting heavier again although not like before the D&C. My doctor agreed to let me go off the Progesterone and take a wait and see approach. This was fine it seemed until last summer (about 2 1/2 years later) when the bleeding got even heavier and the clots returned. I hadn't been to see my OB/GYN since I went off the Progesterone. (Too busy, no money, or other problems to worry about had been my excuses for not going.) I knew the hyperplasia could be back but I decided that since I had been under a lot of stress lately that I wouldn't panic yet. Finally by December I decided to see my OB/GYN. The Trans vaginal ultrasound showed some thickening but he wasn't too alarmed yet and so put me back on Progesterone "Give it just one month. This is a new one, it's supposed to have fewer side effects." he said when I protestsed. So I agreed to try it. Not only did it not help at all but I had so many side effects I just began highlighting them on the little information paper that came with the pills. I also had begun taking daily notes which turned out to be what saved me. The worst side effect of all was that during my next period,I began feeling suicidal. I felt it was the only way these periods were ever going to end. I knew I had to get him to understand that I just couldn't do this anymore. When my period was over I printed out a copy of the notes and wrote my OB/GYN a note and enclosed it with them. I took it in a sealed envelope to his office late the next afternoon. He called me the next day and said okay he could see the approach we had been using was not working for me. He told me to schedule a biopsy and based on that we would decide what to do. I had to wait two weeks to get the biopsy appointment they were so backed up. Two weeks of very anxious waiting. Finally the day came. It was late January. Then another week+ of waiting for the results by which time I had started my period again. It was really only during this time that I began educating myself. The result, Pre-cancerous Endometrial Hyperplasia. We scheduled surgery for late February, a total Hysterectomy and my doctor, who had changed groups, got my hospital records from my D&C. This turned out to be a good thing because it reminded him of something that told him he couldn't do my hyst vaginally as he had hoped. I also went to my primary doctor and had a complete physical (which was long overdue) and found out that despite my weighing over 350lbs., having high blood pressure, and arthritis that I was actually in pretty good health otherwise, except for one nagging unknown (numbness on my left side) that wouldn't cause a problem for surgry. I was a good surgical risk. That wasn't to say they didn't expect problems. I would have to have the stockings on and the leg compression things to help prevent blood clots. Finally the big day arrived, Friday Feb 25th. I was scheduled to go in at 10am. Talk about efficent, you could have set a clock by these folks, we started on time. The doctor told my husband the surgery would take 1 1/2- 2 1/2 hours. Well 1hour and 45 minutes later, my husband said my doctor walked into the waiting room smiling. "Textbook surgery" I had very little blood loss and some minor sleep apnea was the only complication. They woke me up together and enjoyed a couple of laughs at my disoriented expense and sent me up to ICU for my first day. In ICU the only problem was I was so disoriented I don't remember being told about my little button to control the Demoral so I don't remember much about that first day. The next morning though the head nurse of ICU arrived back from her day off and took care of that and then we enjoyed some girl talk (our sons are in the same Boy Scout troop and we are friends) before they shipped me down to the OB/GYN ward. I was treated like a queen by a staff who had few patients and was willing to pamper the ones they did have, including a back massage. I also made it to the end of the hall on my first try walking which is farther than any other hyst patient they've had has gotten on their first try. I was released the following Monday and other than the expected discomfort (which vicodin took care of) and some spotting during the first couple of weeks that my doctor reassured me was normal, I have had a totally uneventful recovery. My friend who is the ICU nurse said that I came through the surgery much better than anyone expected I would. In reading my pathology report I realiz that I am very lucky. There were no signs of any endometrosis on the outside of my uterus so I feel pretty confident that my doctor didn't miss anything. He had given me the choice of leaving my ovaries and tubes in or taking them out. I had him take them and I am glad I did because they were both covered in cysts as it turned out (which explains the painful ovulation) so he might have had to go back in later and get them anyway. I spent my first six weeks post-op on 0.625mg of Premarin but he told me to go off of it at my six week checkup. One reason is I developed a dry itchy rash on my face. The other reason it that even on such a low dose of premarin I never had even one hot flash. He feels that since I had too much estrogen too begin with (the cause of the Hyperplasia) that I may very well still have all I need in my body to meet my needs without the supplements. So I don't even have to worry about taking estrogen unless I start having hot flashes. He gave me some samples of a couple of different plant based estrogens (Cenestin and Ortho-est) to try just in case I do.
So for now the story has ended. I can go back to living my normal life without the burden of heavy periods and a uterus that would have been the cause of my death, had I not paid attention to what happened to
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