Goerwitz

My devoted daughter was born in Dec of 2000, when I was 23 years old. Three months later I found out I had precancerous cells on the cervix that were rapidly changing and underwent cryotherapy. That was not a pleasant experience at all, let me tell you. I was strongly advised not to get pregnant again, there had been too much trauma to the cervix for me to be able to carry full term without the fear of miscarrying or bleeding to death if I made it to delivery. So, that was the beginning of my hell. I could not take birth control because of bad side affects; my body does not like anything in it that doesn't belong there. So finally in 1995 I found a doctor who agreed to do a tubal. All went well until 3 months later when I started having pains so bad on the left side it got to be unbearable. Well, after battling with the doctor for 3 months he finally agreed to doing an exploratory and have a look. Well glad he did it. The tube on the left side had a major infection in it and he wound up cutting that out and most of the tube and told me my body produced too much hormones. That was it. Well things were ok for a while and then about a year later started getting progressively worse. I could not stand the pains I had each month, the bleeding was unbearable to the point I hated leaving the house for fear of floods.

I endured though and just learned to live with it until 6 years later in 2001. I read about endo and really thought that was what I had. I went to a different doctor and we decided on exploratory and she would take out whatever she could find and do a thermal ablation at the same time to cut down on the bleeding. Well, lo and behold, she couldn't find any endo so she just did the ablation. That helped for about a year and a half. Periods were much shorter and a lot less bleeding but the pain got worse and worse with each passing month. I went to yet another doctor who I think is my angel.

We were going to do a bunch of tests. About 4-5 months prior to going to her I was diagnosed with kidney stones but never passed them. Then I figured out the pain was cyclical and that is when I went to her. The doctor did an ultrasound that revealed a cyst or mass. I was to try birth control pills for a couple months and see if they would go away. Well, I knew I couldn't deal with the pill's side affects but decided to try them anyway. This was in the beginning of May of 2003. The pain continued to get worse and worse; I remember one night laying on the floor and just praying to God to go ahead and take me right there and then. I was scheduled for a test of which now I can't remember what is was to be for the last week in June. One Thursday at work I thought I was going to die and called my boss and told her if I didn't leave immediately I would have to call an ambulance. Well, my doctor told me to come in and they would fit me in. She wound up sending me to the ER for a CT Scan. The scan revealed a huge pelvic mass on my cervix and fibroids. I was finally released to go home about 6 1/2 hours later. The following morning at 6 a.m. my doctor called and demanded I come in that morning as soon as they opened the office. I got there and she said we had to do something, with my cervical history she was afraid of leaving the mass in there and discussed the fibroids. I told her to go ahead and take it all out. She did biopsies which I thought I was going to kill me, and sent me home saying they would call me to schedule hysterectomy. Well by the time I got home they had already called with a surgery date of 5 days later.

I made it through the weekend getting as prepared as I could considering the pain I was in and did the same the next 2 days at work. Well, lo and behold, when the doctor got in there that time, guess what, endo was everywhere, all over the right ovary along with cysts of which some had already ruptured, adhering to the front of my uterus, my bladder was adhered to the back of my uterus. Also they found that my appendix had already ruptured and a piece of my appendix had affixed itself to my colon (which had to be removed as well). What had appeared as kidney stones on the x-rays in May were actually appendix stones where my appendix had already ruptured.

The doctor said afterwards she didn't know how I had dealt with all that and it was no wonder I was in so much pain...

I was fine from July to November of 2003. I had never felt better, lost 20 pounds, was in a size 10 and happy with life until I started having more problems. In February, I went to see my doctor and had a UTI and she said that if my pain that was developing on the left side and my lower back did not subside in a couple weeks, to call her and come back in to see her. Well I tried for a couple months to get in to see her, the nurse kept telling me I needed all these other tests done: go see a urologist, get my thyroid checked, etc. I did all these and they all came back normal. I really kind of blame her for some of my troubles although there is nothing I can really do about it. My doctor is aware of what happened and was really upset when I told her how I had been blown off for a couple of months by the nurse who had never even been part of my care in the past year.

I was planning on changing doctors and the new doctor's office had requested that I go ahead and request an ultrasound before coming in there to save time. When that happened everything changed. I was having a lot of bladder issues, incontinence, recurring UTI's, a lot of ovarian pain, menopause symptoms that include; weight gain, dry hair, dry skin, lack of libido and insomnia. The worst symptoms for me were the weight gain and the bladder issues along with the pain.

When I went for the ultrasound the tech gave it away that something was up. She kept asking when I was going to see my doctor, when I had an appt., etc. I knew right away something was wrong. They wouldn't let me leave without seeing my doctor. That is when she told me I had a 6cm endometrioma cyst on my remaining ovary. We talked about options of which the only thing for me to decide on was to take it out. I have been dealing with pain for so long and if the cyst were to go away, I knew it would come back, I have already endured the experience of a cyst rupturing and didn't want to go through that again. So I signed the paper and she told me surgery would be scheduled for 6-8 weeks. So I left in tears.

About 3 days later I get a call from the scheduler and she says that it is to be done in 3 weeks instead of waiting longer. At first I was really upset because I wanted to accrue some comp time at work and get some things taken care of at home. But the more I thought about it I changed my mind. What if I did something and it caused this endo cyst to rupture and spread more endo everywhere and make it even worse, and could I endure anymore pain? NO, NO, NO. I decided I was ready.

She had me go to a urologist and he did the cystoscope, which I hope I never have to have that done again! It wasn't very painful, but very uncomfortable and I have to say, that after all that I have already been through, that test made me feel so violated in a way. Luckily for me that test and the IVP showed nothing but he did think that the endo had attacked the outside of my bladder and/or the ureter. We would find out.

When I went for my pre-op visit with the GYN she had another ultrasound done. It showed the initial cyst had shrunk, but low and behold that revealed 2 more behind it. She gave me the option of the Lupron shot to shrink them down. I said no, lets go ahead as planned and just take it out. She said OK I will see you next week.

So I got ready. Work was much easier this time than last year, thank goodness. I didn't have that many projects going on to have to transition to my backup which really helped things. I got all my stuff done and caught up to where it was to be.

The day before surgery I had to take my 13-year-old daughter for blood tests. She has just recently been diagnosed as anemic and we are trying to figure out what is causing it. Her hemoglobin levels at one point were low enough for her to be admitted to the hospital. They have her on iron pills 3 times a day and birth control patch to keep periods regulated and lighter. Her timed bleeding test was elevated so now I have to take her to a hematologist next week for more tests. Does it ever end?

We had planned to go do her tests, run some errands, meet a friend for lunch and the go for manicures/pedicures together but the day before that our plans got changed. My boyfriend got his boat going and asked if I wanted to go fishing instead? Well yeah! I knew I would be housebound for a while and jumped at the chance to go out on the boat and fish and have a good time. And yes, we did have a good time. I was the first one to catch a fish and it was a great afternoon. Had my last meal on the boat and enjoyed it.

That evening I had to drink that dreaded GOLYTLY - that was the most awful stuff I have ever had to drink! And the terrible part was that I was prepared to be up most of the night going to the bathroom and that didn't happen, it didn't start to take affect until the morning of surgery and we were late leaving the house because of it. We live 30 miles from town and I was so afraid of a spasm on the way but did make it to the castle without any accidents.

We get to the castle at 6:30 (1/2 hour late), and lo and behold, my father is waiting outside for us. I was very surprised to see him there. We go inside and I go to where I was told that they had moved me to the Women's Pavillion Surgery Center. We finally found that section of the hospital and of course they are waiting for me, I have less than an hour to get ready. I change into the lovely gown and socks, put my hair up in a pony tail and am ready. My father, boyfriend and I are just chatting and they finally come in and get me. I hug and kiss both of them goodbye and I am off. The holding area was different than the one I was in before and I am the first surgery of the morning. They start my IV, they start the anethesia and we are off once again. I want to add how wonderful all the staff were to me too. I remember going into the OR and them starting to prepare and then all of a sudden it seemed I am coming to in the Recovery area. Thank goodness no nausea; they heeded my request and followed the same anethesia process they did for the hyst. Thank you, I was so afraid of waking up nauseous and so afraid of how it would feel on the tummy being sick. I was there for a while as I heard them talking about they were getting ready for me upstairs. I know I was in and out but still seemed so much more coherent than the last time and thank goodness my morphine drip was working this time and I was not in excruciating pain.

They finally got me to my room about 11 a.m. and got me settled in. I slept most of the rest of the day until my boyfriend came with my daughter for a visit. Let me tell you, though I got no sleep that night for some reason, I wasn't too uncomfortable. I just couldn't sleep. The following day was so much better, pain was under control and the nurse that took care of me during the course of that day and the following should get an award. She was awesome. She spent so much time checking on me, bathing me, making sure I had something to drink once I was finally allowed to drink and was really the best. I have already decided that when I go for my postop visit I am going to bring her a nice thank you gift! The second day was even better than the first. They took out the catheter which I was really scared would have to stay for a while. I was allowed to get up and walk and I did. I took a shower while Wonder Nurse changed my bed and got my room straight. The shower was wonderful. She brushed out my hair for me (It is almost down to my waist), rubbed me down with lotion, helped me to brush my teeth and what a difference it all made. Then I put on one of my own gowns and felt so much better.

Again that night, however, I got no sleep. My boyfriend came alone in the evening and flipped out the night nurse. He got in the bed with me! Yes he did. I had to get up one time to go to the bathroom and the nurse came in and saw only him in the bed. He was a trip; he has a real husky voice and a goatee. He asked her what was up with all the face hair and his voice. She looked at him, looked around the room and chuckled. She finally saw that I was in the bathroom, smiled and walked back out. They were amazed that at 4 a.m. I was up and walking the floors and coming for coffee. I figured if I wasn't going to sleep lets chug down coffee and help the bladder do its own thing and it did!

My doc came at lunch time and told me again all that she found, since I couldn't remember everything she told me the day of surgery. My left ovary had 3 endometrioma cysts (I can't remember the sizes now but 3 is enough right?). The ovary had twisted itself and was encased with both endo and adhesions and was stuck to the bowels. I had endo all over the left side of the bowels, and it was on the bladder and left ureter but had not gone into the bladder - woohoo for that! She said we made the right choice in opting for surgery, it would have only gotten worse.

I was released that afternoon to go home for which I was so glad. I knew at home I would rest much better.

For the first week and a half I stayed in bed only to get up and walk a bit around the house and go to the bathroom. I watched TV, played video games and slept.

The second week the hot flashes and night sweats set in. I am still trying to get used to those, but they are not that bad, just wake me up all the time. I am much more mobile than I thought I would be and my incision looks really good. I was afraid I would come out with a FrankenBelly instead of just swelly belly which yes I do have.

Today I am 2 days shy of being 3 weeks postop. I have been out of the house 3 times. I was told I could drive as of last week but don't feel ready, still too uncomfortable to do that, riding is enough for now. I have lost about 11-12 pounds at this point and couldn't be happier about that. I still have to be careful with eating and the bowels but every day gets better. I haven't had any incontinence and am still taking Detrol and it seems to be so much better now. I hope that I wont have to take it for much longer.

I have to say at this point, even though I am sad, angry and upset that I had to do this all again, I am glad that I pushed for my health. If I had let the nurse blow me off for much longer it would have gotten worse and feel that the situation was bad enough as it was but now it is over. I am on the road once again for recovery. I know it will get better.

I am not taking hormone replacement therapy because of the severe endo. When I go for my postop visit next week she will put me on Fosomax for bone health and that is it. Maybe in 6 months or a year depending on how my symptoms are at that time we will try a low dose but maybe I won't need it.

I haven't had any mood swings or crying spells which I was terrified of but maybe that will still come... I guess time will tell.

For now I am just settling on feeling so much better, the only pain I have now is in between my belly button and my incision and have a couple numb spots still. Other than that and being tired I feel great!

Maybe this is the end of the road for me now. I sure hope so. In 9 years I have had 6 surgeries with the last 2 being major abdominal surgeries. I think I have been through enough. I know though there are women out there that are a lot worse off than I am. I feel for them and am grateful that it wasn't more serious for me, like having cancer. I thank God for that.

Now here is sit again facing surgery #7 for Ovarian Remnant Syndrome, I will post about it after that surgery is done.

Jody

July 9, 2005

Amy and Richard Goerwitz
Amy@Goerwitz.com
Richard@Goerwitz.com