My Castle Story (very long)

Well, ladies, I have finally sat down to write my story. It's going to be long, but I hope it helps or informs someone, so please bear with me. I feel like it's been forever since I got home, but it's actually only been a week that I've been home from the castle. And before you wonder where the pillow police are that I'm able to sit down and write this story, they're all here - I'm sitting in my recliner on my laptop (cheating! lol).

A little history: I had one child almost 11 years ago and after he was born had a Norplant for birth control. It was wonderful. I was one of the lucky ones and didn't have any trouble with it. Five years later when it was time for it to come out, I tried other things (pills, Depo Provera, etc.) for a few months and then decided to just go ahead and have a tubal. My thinking was that after a tubal there wasn't any need for birth control. My endo had other ideas. That is when it got bad. For the first year or so after my tubal, I had extremely painful periods and horrible PMS after my tubal, and I thought that perhaps my gyn at the time had done something wrong during the surgery and that's why I had all of this pain. I had no idea it was endo, or even what endo was. Finally, from somewhere the idea crept in that it could be endo and I started doing research, research and more research. After I was sure, I went back to this gyn and told him what I thought, he agreed and told me that the only way to "cure" endo was to have a hysterectomy and that was the only way he would treat it. Well, at 26, I wasn't ready for that so I found a new doctor.

My new gyn, my current one, is great. He did a lap that same year and cleaned it out as best he could and that lasted me for almost a year. Then the pain started coming back, and as it does, it got worse and worse over time. I put off the hyster not because of my age, because I knew I was done having kids so that part didn't matter, but because I didn't want to be dependent on HRT for the rest of my life. Finally, one day at the early part of this year while I was rolling around in bed in pain, I decided that HRT had to be better than all of that pain and aggravation. With the decision made, from there I started making the preparations.

Fast forward to six months later. My surgery time was set for 1:45pm on Friday, August 2. I arrived at the hospital at 11:45am as instructed. I waited and waited in the waiting room and finally, getting very frustrated, went to the desk and asked what the holdup was. I have had surgery at this hospital before and know that they're not usually like that. I was informed that my doctor had been called upstairs to do a c-section so it would be just a little while. Oh, okay, that was understandable. About 5 minutes later they called me. I guess he didn't have to do that c-section after all because he was wondering where I was!

The nurse took me to my pre-op room and did a brief history. I got into my lovely blue gown and she gave me a shot to "dry me up." That it did. We then walked back to the holding area where I knew that I would meet the A man. He was very nice and as soon as we had gone over my paperwork and history, he got my IV started and gave me a very nice cocktail to drink. It smelled really good - like grape cool-aide - but tasted absolutely terrible! It worked really quick though and I was smiling in just a couple of minutes. I remember being wheeled into the OR and being moved to the operating table. I heard people talking and the A man telling me that I was going to be drowsy and that was it.

I sort of remember waking up in the recovery room, but not really. I remember a nice woman, who I assume was a nurse, telling me that they were going to get me up to my room. My doctor told me at my pre-op appointment that I would not have a PCA pump, but that they would push everything through my IV. At the time that sounded okay, but if I ever have a major surgery again I will have to insist on one, not only for the regularity of it, but because as it turned out they didn’t push the shots through my IV, they gave them all to me in my butt! I’ll bet I had close to 10 shots between the pain meds and the nausea medication. Yikes! They didn't have my pain very well controlled coming out of surgery for some reason. Maybe they were asking me about it and maybe not, but it felt like they hadn't given me anything (though I'm sure they had). I remember feeling the bump as my bed was rolled into the elevator and I definitely remember begin moved to my bed in my room. I'm sure my roommate remembers my scream as that transfer happened as well!

I had requested a private room and was told that I would probably get one, but would be placed on the OB floor, which was fine with me, but by the time I got out of surgery, quite a few babies had been born so I didn't get one. That turned out to be all right though, because my roommate was about the same age as me and had the exact same surgery as me on the same day with a different doctor! That was neat. I even turned her on to HysterSisters!

The first night was really rough. For the first time ever I reacted badly to the anestetic and was very nauseous the entire night. They tried hard, but they couldn't get that resolved either. I think it was also the pain meds they were giving me - Demoral (I'd never had it before, but I don't think I ever want it again!) and Phenigrin (sp?) for the nausea. I had the compression wraps on my legs which themselves didn't really bother me, but kept waking me up when they would inflate and every time I would go to move my legs the hoses would be in the way. So, every 15 minutes or so I would wake up, or wake up as much as I could at that point. Finally, on Saturday morning I told them that I didn't want any more shots and wanted Percocets instead. It took them a couple of hours to get the orders changed from IV to oral, but that was okay.

About 10:00am on Saturday I decided that I wanted a smoke so my husband put me in a wheelchair and took me outside. Being outside was nice, getting the fresh air and the sunshine, but I didn't really want the cigarette once I got out there. When we got back upstairs I decided that I wanted to take a shower and though it was hard because I was still so out of it, it woke me up and I believe that is what turned the tide. For those of you LIW who read these stories like I did before your surgeries (I couldn't get enough of them - I read every one on the site that I could find), I highly recommend taking a hot shower the next day as soon as you are able. It relaxed my muscles and seemed to "wash" some of the "surgery crud" from me. I still didn't have an appetite through Saturday afternoon and took a couple more naps, but all in all I felt much, much better.

On my hospital bed, I had a bar across the top with a triangle that I could grab to help me move around in bed and get in and out of bed (like an orthopedic lift). That was WONDERFUL!!! It helped to take some of the work off of my abdominal muscles when I needed to move around, even when just rolling from side to side while lying down.

Saturday evening my gyn came to see me and told me that surgery went well, although it was about an hour longer than normal. We both knew that he was going to find something extra on my left side because of the sudden appearance a couple of months ago of extreme pain there before and during my period. He said that there was an incredible amount of adhesions and scar tissue on the left side and my left ovary was just buried in it. He told me that normally he removes the ovaries first and then removes the uterus, but with me he had to take my uterus first because he couldn't get to that left ovary with the uterus in the way. It was really bad in there. He made the comment "it's a good thing we did this when we did because it sure wasn't getting any better in there." He was right about that! All in all, though, everything else was normal and went smoothly.

Saturday evening they brought me dinner and I was actually looking forward to eating - I had part of my appetite back. I only ate about half of it because it was stuff that I didn't like. About an hour after dinner I was still hungry so I sent DH to get me some KFC. Boy, that tasted good! I watched a movie and faded off to sleep after that. I slept MUCH better Saturday night and only woke up a couple of times to go to the bathroom. Sunday morning I had breakfast and the resident working with my gyn came in and asked if I wanted to go home. Did I??? Oh, yea. DH arrived and I was discharged at about 11:30am. My favorite nurse even invited me to stay for lunch, but I had to turn her down! lol

DH, DD(step) (17) and DS (almost 11) have been wonderful since I've been home. Today I'm 8 days post-op and I have taken three car rides in the last four days. They’re just short trips, and the first one really wore me out, but each time I get a little bit stronger. It’s nice to get out of the house and feel the air blowing in my face going down the road! DD has been cooking the meals and taking care of the house, DS has been my "gopher" and getting me whatever I need, and DH has been taking really good care of me.

I had some spotting when wiping from the time that I started going to the bathroom on Saturday, but not enough that it ever came out on my underwear. It stopped on Monday and is only there now first thing in the morning or if I’ve done too much (and even then, only enough to barely discolor the toilet paper). I had my first BM in the hospital on Saturday afternoon, and actually it was diarrhea which was a lot easier to deal with than trying to figure out how to push! They had been giving me Ducolax since Friday night so I guess it did the trick. I've had regular BM's since being home (that was one of my big worries pre-op!), though I seem to be doing more of that than pre-op, just like I seem to be peeing more. My appetite is normal, though I've found that I can only eat a little bit at a time (about half of what I could eat pre-op) and that's a good thing because I could stand to loose some weight!

My belly is numb from about two inches below my belly button to my hair line, but from the research I've done on this site, I've found that should resolve itself in 5 or 6 weeks, though I will mention it with my Dr. next week at my 2-week check-up. All in all, the experience was better than what I expected it to be, it wasn't what I feared it would be and even sitting here today at 8 days post-op I would do it again in a heartbeat! I know what this is going to bring to my life and I am so looking forward to it. My best friend suffers from endo on about the same level that I DID and seeing how my surgery went and my recovery is going she is ready to call my gyn (she's been looking for a new one anyway) and make an appointment to talk about scheduling hers! Of course, in the meantime, I sent her here!!!

I wrote this a couple of days ago and the only other thing that I have to add is a word of caution to any of the fresh Princesses out there who are BBW’s. I am and I had a bikini cut incision for my surgery. Yesterday I was checking my incision and noticed that there was a smell coming from down there. I knew what that was. A yeast infection. Yuck! It doesn’t itch, but now everything is very tender down there and the incision feels like it’s raw (thought it’s not). I can’t put anything on the incision, so the doctor called me in the pill that you can take for a yeast infection and told me to keep something that is all cotton (she suggested another pair of underwear!!!) folded up in the “crack.” It seems to be helping. What caused it? Getting hot and sweating when I went on a car trip to the store. So, watch what you do and how hot you get, and let it dry out down there as often as you can!

I know I wasn't very vocal with voicing my concerns and fears before my surgery, but I gave my share and spent just about every minute of my time on the net on this site before surgery - and I'm not done yet! To the Princesses out there, thank you, thank you, thank you for being here, sharing your fears and experiences and bringing light to the problems that we all share. To the LIW out there, read, read, read, post, share and then let it go. It will be what it will be and it won't be anything like you think!

I love you all!

Better and better, day by day...

Gillian

Hi Gillian,
THought you would like to know I did read your post. Like the most of us endo sufferers, you had a rough ride. But, you were lucky to have a doctor who listen to you. So many of us aren't. I had problems with endo since I was about 11. Infertility problems, mysterious side aches, menstrual, bladder problems, back aches. But, I had a tubal after my 2nd child. I had a tubal in fear I would get pregnant in my forties. I had my 2nd child at the age of 30, after trying for 3 years to get pregnant. Yep, the tubal just help aggitate the endo even more. Then I was on a constant roller coaster ride with doctors. Who all insisted, intestinal problems. Well, I have intestinal problems from it now. And probably permanent. If I had to do over, I would had risk the chance of getting pregnant again, rather than having the tubal. Even though I would still be dealing with the disease. I am happy to have the surgery done. I have no regrets. I am 5 months post, still on the road of recovery. For us, recovery will take a bit longer than most.

I am glad everything went well for you in the hospital. And I think your story will help those who have never experience any hospital stays and surgery.

Get alot of rest, and get well soon

Angl

Hi Princess Gillian!

Welcome to the other side and thanks for sharing your detailed castle story. Like you, when I was an LIW, I loved reading those accounts - it helped me so much to get an idea of what I might expect - despite knowing that mine "would be what it would be".

I'm closing in on 10 weeks post-op and still have some numbness in my belly above the incision. My doc says it takes a while for those nerves to regenerate - it is slowly getting better though!

How great to have a laptop during recovery - I had to limit my computer time at first and it was hard to not overdo it - I just wanted to be here all the time!

s,

Cecee