Sunday, July 20, 2008

Going Under (Part 3)

August 31st, 2007 was hands down one of the best, yet worst days of my life. It started very early since I had to be at the hospital at 6:15 to get prepped for my surgery at 8am. Really the preperation started the day before with the horrid bowel prep and Cytotec (meant to dialate my cervix overnight). Honestly, the Cytotec was worse than the bowel prep! My doctor had me take 2 Lortabs with it, but I still woke up at 3am thinking I was dying. "Cramps" is not even the right word to describe it... seeing as this is what they give women to help them dialate and go into active labor (prior to Pitocin) I guess you could call them "contractions", only there would be no baby at the end. Oh no... no baby, but still worlds of pain that the Lortab did absolutely NOTHING for.

Overnight bag in hand, clutching my favorite Harry Potter book, and my husband and mom (who had flown down for a week and 1/2 to help, bless her heart!) we arrived early and sat for a while until I was called. Ben was allowed to go back with me, thank goodness because I was a nervous wreck. I had been told that once my IV was started they would be able to give me something to help me relax, but when I asked the nurse about it, she informed me that this would not be possible. I FREAKED. My doctor came to see me, went over the surgery plan, and tried to cheer me up some. I don't know if he sensed that I was on the verge of hysterics and maybe went to talk to the anaesthesiologist, but within 5 minutes my "new best friend" was there, drugs in hand. I did end up breaking down and crying, but that didn't last long because the anaesthesiologist kindly sent me into la-la land quickly after placing the most wonderful anti-nausea patch behind my ear that I was allowed to keep on for 2 days! I remember watching them inject something into my IV and within seconds I felt like I was floating off my gurney! Ben kissed me goodbye and off I went. I am SO grateful for whatever it was they gave me because as they were wheeling me down the hall and all those lights were passing me by overhead, I remember thinking "I should be terrified right now... hmm, thats odd... oh well." :) In the operating room I was immediately surrounded by a gazillion smiling faces! Such friendly nurses, I thought. One asked me if I was cold (maybe I was shivering?) and before I could even answer, I could feel a bunch of warm blankets being put on me, even wrapped around my head! Oh it felt so good! That same nurse stroked my arm and told me she was going to give me some oxygen (yeah right) and that I should breathe in deeply. The mask was put over my face and I prepared for the sickly sweet smell of the anaesthesia I remember from my tonsilectomy as a child, only it never came. Maybe it really was just oxygen? Or maybe they've improved the scent of anaesthesia! Who knows... in any case, I don't think I took more than 2 breaths before I was g-o-n-e.

When I woke up I was cold... and in pain. Lots and lots of pain. Immediately a nurse rushed over and asked me if I was cold... yes! Was I in pain? YES! She quickly brought me more warm blankets and shot something into my IV. I went back to sleep. This happened quite a few times, until I started feeling a bit more lucid between catnaps. It was now close to 1PM and I wanted to see my husband. I was informed that I was in Phase 1 recovery and would be able to see him shortly when they transfered me to Phase 2. A good friend of the family (who worked at the hospital) came to see me and bring news. I had asked Ben to make sure he found out what stage Endo I had when my doctor finished up with me. It was the first question I needed answered. I knew he would have told her, so I asked. I knew it before she even spoke because of the look on her face. "Stage 4, honey. I'm sorry..." I cried... and cried... and cried. It made sense, really, but I had always held onto the hope that just maybe I would be one of those women that had a mild stage of the disease and just had a lot of pain. After all, the amount of pain and the gravity of the disease are not directley proportional. But no... that was not the case, and I would soon find out just how bad my Endo was.

My stay in the hospital was pretty nice. Odd, I know, but really I wish I could have stayed longer! Every 4 hours a nice nurse would come in and shoot me up with some more painkillers, which was great because at about 3 1/2 hours later I would be in considerable amounts of pain and by the 4th hour I was on the verge of tears. Getting in and out of bed to go to the bathroom was... well, terrible. I remember everyone telling me to "use my legs" but they felt like jello, how do you get around that? My belly was HUGE and bruised and I my 4 inscisions looked nasty. They were closed with surgical glue and not even bandaged, so there they were in all their bloody, nasty, scary glory! Peeing was near impossible for that first afternoon, I almost had to be cathetered again. Once I finally was able to *tinkle* I had to do it in a measuring cup sort of thing and it was BLUE from the dye used during the Lap. (I had an HSG done as well) I freaked out and Ben had to explain why that was happening. My doped up/paranoid mind was conjuring up thoughts of kidney failure or something along the lines of that! I had my appendix removed during the Lap and so I was on a liquid diet that day, which was fine by me because I was so not hungry. But the apple juice and jello were appreciated.

The next morning my doctor came to see me now that I was more lucid and able to retain information. He brought with him tons of pictures (that I was able to keep!) and also drew me a diagram of what he found inside me. First of all, my pelvis was pretty much frozen. Everything was glued together with adhesions. My uterus was glued to my bladder, my intestines, and peritoneal wall. My intestines were also glued to my peritoneal wall. My appendix was covered in Endo and curled up/glued to my right ovary and tube. Finally, an explanation for all those trips to the ER with "appendicitis" that never turned out to be anything real! My doctor took that little sucker right out, and for that I will be eternally grateful to him! My poor ovaries were covered in countless cysts and many endometriomas. He showed me pictures of my pock-marked ovaries after they'd all been drained and shelled out. I had had a fibroid removed off my uterus and had needed a D&C to clean out the inside of my uterus to stop all the bleeding. An HSG was performed to clear out my tubes. He said it was all a huge mess. It was horrifying yet SO vindicating at the same time. All these looooooong years of being told this was just all in my head, that I just had a "low pain tolerance" finally made sense. I wasn't crazy after all, and there WAS a cause for my pain, which was VERY MUCH REAL. Like I said, it was the best and worst day at the same time for that reason. I FINALLY had my diagnosis.

Later that day I was discharged and sent home to heal. I did not want to leave. I loved my bed that made it easier to get up and down. I loved that nurses were there with more pain meds and comforting smiles. As a parting token, I was given an abdominal binder which would become my new best friend for the weeks to follow. Every time I stood up, it felt like my internal organs were falling out. It was painful and pretty scary. I had a lot of mesh put in to hold everything in place once all the adhesions were cut, so I imagine thats where the "falling out" sensation stemmed from, since my organs were now free to move around like they should in a normal pelvis. This however, was not fun and hurt quite a bit, but the abdominal binder helped a great deal in that respect.

Recovery at home was long and hard. I was very frustrated because I had heard that this was the type of surgery that you could have on a Friday (which I did) and return to work on Monday. I did not. I could barely walk around for more than 5 minutes at a time that Monday. On Friday I made my first trip out of the house and it just about killed me. I felt so weak and the pain was still very much present. I was supposed to return to work the following Monday and I had no idea how I'd be able to. Returning to work also meant going off the Percocet which I could not imagine at that point. From the outside, all you could see were (4) inch long inscisions. Why was I having such a hard time? My mom and Ben kept reminding me that the real healing was taking place inside, where the damage couldn't be seen. I had to be patient with myself and be positive. Things would get better.

I did return to work the following week but only part-time the first week. I would come home and be so exhausetd I would crash on the couch and stay there until Ben came home from work. To be completely honest, it took about 6 weeks to get back to normal. I had some post-op complications including oral thrush, infections and a crazy allergic rash to the surgical glue used to close my inscisions. Definitely not a very fun recovery period, but things soon began to improve and I felt the old me resurfacing. By the old me I don't mean pre-op Alex... that pain-riddled, always exhauseted Alex was not me. I mean the Alex that existed before pain ruled my life. An Alex that had been burried for so long. The change was amazing. I had so much more energy! I no longer had to rely on painkillers to keep me going. I believed my surgery had been the miracle I'd been hoping for ... and for a while there it was, until the pain slowly started coming back. We were back to trying to conceive at this point and using Femara as the fertility drug of choice, since it is more Endo friendly than Clomid. However, my ovaries were not a fan... perhaps they were still healing and it was too soon to push them so far. Regardless, I only made it 4 months post-op before we were once again forced to switch modes. This time Lupron was the detour, a drug I'd been hoping to avoid.


Jeanne said...


I'm sorry I don't currently have time to properly comment on this post but I wanted to let your readers know that you are listed as an endometriosis resource on CureTogether's website:


Anonymous said...

What a good writer you are. Your post made me remember my surgery like it was yesterday (Aug 28, close to yours). I hated surgery, the whole thing was too scary for me and I had several complications afterwards.
I do agree with you though, it was nice to *finally* have an answer to my constant health issues=endometriosis. I was sad, lonely, frustrated, etc. That's when I found Jeanne (above!) and she helped dig me out of the hole I wanted to bury myself in. It was more than a diagnosis for me, it became depression over "why" I had this illness while others didn't. What some might call a 'pity party', but what was me searching for answers.
And it's been non-stop researching, advocating, supporting ever since.

My Endo Journey said...

Bless you! Mesh to hold your organs up? I just want to hug you right now. I have stage IV too, but, I didn't experience anything like that-lol-now I'm wondering if they missed something (I have a wandering paranoid mind too). I appreciate your details and sharing.

Alexandra Carmichael said...

Hi Alex,
Thank you for your courage and openness in sharing your story so poignantly. I look forward to following your journey and wish you continued strength and hope.

Jenn said...

I know this post was posted long ago, but I just stumbled upon your blog. This brought me to tears as your story sounds so much like mine. I am also a Stage IV endo patient and after excision surgery, found out yesterday that my endo is back via endometriomas on my ultrasound. We were supposed to start Clomid/IUI this month, but now the RE has said that this won't help us and we are to move directly to IVF. Which is probably the end of our TTC journey and onto adoption. Anyway, I just wanted to say I can relate to your post and this disease is so horrible in that it robs us of so many things. Hope you are having a pain-free day!


Unknown said...
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Dora Pena said...
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Dora Pena said...

Hi Alex,
I was practically in tears reading your posts. It feels so relieved to know that I'm not along in this journey. I was diagnosed with endometriosis after my surgery in 2006. I got my left ovary removed due to large cyst and was put under depo for 3 months to treat my pain. I changed doctor because my previous one didn't help. I finished the Lupron shots in March. I was on a six months treatment. I haven't see my period yet. But I do hope to be able to conceive. Thanks for sharing your experience with Endo.