Seven reasons why Endo-Fatigue causes so much trauma to its sufferers

Thankfully, my fatigue has been better since my surgery, but I know these feelings so well. Survivingendometriosis articulates the drain of fatigue beautifully.

survivingendometriosis

Have you recently been tired? Have you recently been endo-tired? If yes, you’re very likely to know the difference. Explaining how you feel to the rest of the world is a different matter altogether.

“It can’t be endometriosis that’s making you feel so tired. Are you sure you don’t have cancer or something?”

“I’m too busy to ‘rest’ like you do.”

“I admit you’re not well, but stop ‘revelling’ in it.”

Renunciation and attack are common reactions. Onlookers simply refuse to believe that a person can be so excessively tired because of endometriosis, so they come up with alternative explanations: You’re lazy. You’re feigning it. You’re exaggerating it. You’re just feeling sorry for yourself. You don’t want to face up to your life. There must be something else wrong with you.

My experience has been that most people, including me, the sufferer, are, initially at any rate, unaware of this…

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My First Surgery – The Surgery, and Recovery.

I know, this post is far overdue. This semester has been kicking my ass, and because my surgery was two days before the fall semester started I haven’t had a break to actually write this up. So, this will be like taking a little trip back in time.

August 22.

I had to be at Dr. Y’s office for my pre-op appointment at 8:00 a.m., and we live approximately 2.5 hours away from his office and the hospital where I’d be having my surgery- which meant it was a very early morning. I walked the dog, got dressed in my long stretchy skirt and “Ova achiever” shirt, snapped a quick photo to post to Facebook (as seen below), gathered up my things and climbed into the car.

My “Its far too early in the morning, and I’m nervous about this whole surgery thing” look. Please ignore the super messy house in the background.

The hardest part about the morning was not being able to have anything to drink (except a tiny sip of water to take my omeprazole- the only medication I could have, and was told to take, before the surgery), so I had really bad dry mouth.

The pre-op appointment lasted maybe 20 minutes. The nurse took my blood pressure, temperature, and weight. Dr. Y explained where the incisions would be, and asked if I had any questions. Then they sent us over to the hospital to check in.

It took a little while to figure out where we were supposed to go, but we found it and I checked in. That’s when I got my id-bracelet, and the sheet of stickers to give to the surgical nurses. From there we were directed to the women’s surgery waiting room on another floor. We had hardly found a seat when the nurse came to get me. I had to leave A waiting there.

Once we were back in the pre-op area (it was a lot of beds around the walls, surrounded by curtains), the nurse took my weight and height again. She led me to my bed, gave me a gown and socks to change into, and then directed me to change into them. She also gave me a little bag to put my glasses in, so that they could put them back on me as I woke up.

After I changed she opened the curtain up again and had me get into the bed. I sat there a while before another nurse came by and started my IV, and hooked it up to some saline. She was a sweet-heart, and made my experience much more pleasant. Another nurse came by to get my pre-op information again. It was the third time I had given information to the hospital (twice on the phone), but apparently they had just switched to a new system and kept having issues. The nurse who was typing in my information kept getting called away, and then would have to come back and start again, so taking down all my history took a long time.

Another nurse came by and took some blood, and they made me pee in a cup for a pregnancy check- even though there was no way I was pregnant. Better to be safe than sorry I guess. After about an hour, they when and got A for me, and he got to sit with me until they started to take me in for surgery. The really sweet nurse who put in my IV asked me if I get motion sick, and I told her I get very motion sick, very easily. To help me feel less nauseous from the anesthesia, she gave me three different anti-nausea medicines. The first was a patch behind my ear. She also put some stuff in my IV. She said that people had told her that the IV medicine felt kind of like CT contrast (that burning feeling), so she was going to put it in suuuuper slow to avoid that. She spent about an hour putting it in my IV, and I didn’t get that burning. I’m really thankful for that particular nurse.

Just a few moments before I was going in for the surgery Dr. Y stopped by and told the nurses that he wanted me to be awake when they brought me into the operating room, and to put my legs in the stirrups first, to make sure it didn’t hurt my hip. Everything went pretty quickly after that. The nurses brought me the final anti-nausea med. It was this liquid which tasted like a really salty warhead candy. It was pretty gross, but it was certainly better than the bowel prep stuff! Then I had to take a pain pill. It was too big for me to swallow so they had to cut it into quarters and get meme extra water. The nurse who did my IV and anti-nausea meds then gave me an initial sedative, I said goodbye (and I love you) to A, and they wheeled me into the operating room. This part is all a bit fuzzy. I had to switch from the bed I was in, onto the surgery table. It was very padded. They had me put my legs into the stirrups (which , the position for this surgery is like sitting in a chair, but laying down, with your knees bent up that way) and confirm it didn’t hurt my hip. Then I put my legs back down. My arms had to be by my sides, and they strapped them and my head into these padded things, and put the mask over my nose and mouth. Apparently that is when the anesthesiologist put me under, because I don’t remember anything else. I don’t even remember seeing the Da Vinici machine.

I woke up in a recovery room that looked similar to the pre-op room, but with less beds. It was really slow coming out of anesthesia. I’m pretty sure I drifted in and out for a while. The nurses checked my blood pressure a few times, and encouraged me to breath deeper- I apparently was breathing far too shallow.

Once I was more awake, they took off the leads to monitor my heart and had me sit up a bit. And they brought me a Coke, which was amazing. And, thanks to the really sweet nurse, I didn’t have any nausea at all.

After being awake for a bit, they went and got A.  He said the surgery had taken about 2.5 hours, and Dr. Y came and talked to him after the surgery, but he didn’t really remember what he said, he just wanted to know I was okay. The nurses then came by and took me to the bathroom to encourage me to try to pee. I was having a lot of trouble trying to move around with my IV still in, so they took it out. I also made a bit of a mess everywhere, as one of my incisions was bleeding a bit and I had some vaginal bleeding from the manipulator they use to get the uterus in the correct positions. The nurses were really kind and helped get everything cleaned up. They asked if I wanted A, and went and got him for me. I don’t know how long I sat in the bathroom, leaning against A’s leg. It took a long time for me to relax enough to pee. It was really nice having him there for support though.

After I managed to pee, I was allowed to go sit back in the bed. I had heard that after the lap. many people experience really bad shoulder pain from the gas they use to inflate your abdomen, so I was expecting that. Instead I got incredibly sharp pain under my left ribs, and a really hard time breathing. The nurse recognized immediately that it was from the gas, and reclined my bed back further, which really helped.

I’m not sure how long we stayed in recovery. But before I knew it, I was being released. I changed back into my loose maxi-skirt and t-shirt, and was taken in a wheel chair by one of the nurses out to the parking garage. Then A helped me slowly navigate back to the car and drove us home.

I think we were home by 5:00pm that night. Maybe a bit later. I climbed right into bed. Since we have a dog and two cats, we built me a protective “fort” around the bed. We blocked off the edge I was laying on with our 48″ x-pen (you know, those fold-able metal gates to contain dogs or other pets). Then I had my adjustable laptop table over a really soft pillow on my abdomen/pelvis, so none of the pets could step on it if they got on the bed from the other side. All and all, the set-up worked pretty well. I don’t remember much else from that day. I think I ate something, but I’m not positive what.

Initial Recovery.

My mom came down sometime the next morning. She and A went and filled my pain prescription for me, and she made me some soup. She also made me get up for a bit and move around- which I really didn’t want to do. For the rest of the weekend she made me move around and eat things. I really didn’t have an appetite and was pretty nauseous from the Percocet I was prescribed, so I mostly picked at food. The Percocet also made me really itchy and feel awful. And, it after taking it for a few days I noticed it also made me stop breathing periodically- which is pretty frightening. So, after four days of higher pain management all I was stuck taking naproxen. It didn’t quite help the pain, but at least I didn’t stop breathing.

The first week after surgery I was useless. I couldn’t think clearly and just wanted to sleep. I did walk around the house a bit each day, and braved going really slowly around the grocery store a few times. I also took a short shower everyday, to help keep my incisions clean. I had four incisions: one at the top of my belly button, two on my right side, and one on my left. They were closed with surgical glue, so there was surgical glue all over my abdomen. My belly was a bit swollen, and a little bruised, but nothing too bad.

I took the week after my surgery to initially recover, but in doing so I missed my first week of classes. So I couldn’t miss the next week. I wore a lot of dresses and loose skirts for the first few weeks of recovery, and took everything extra slow.

On the second weekend after the surgery (Sept 6), A and I got married. That was a really long weekend, but I was already feeling better and in less pain than I had been for ages. I didn’t need to take any pain killers that day, and didn’t use my cane either. I did have to take rest breaks, and forgo dancing though (not that I would have danced anyway- I’ve got no dancin’ skills). And, needless to say, there was no honeymoon.

I had my post-op appointment three weeks after the surgery, and finally got to see the surgical images and pathology report. Dr. Y used the CO2 lazer to cut out areas of vascular abnormality. Cutting out endometriosis is far more effective than having ablation or burning it; those types of procedures can actually make endometriosis worse. Dr. Y cut out 7 areas that he sent to pathology, and drained a large endometrioma (chocolate cyst) from left ovary. The pathology confirmed that I had endometriosis in my right uterosacral ligament, and in some recto-vaginal areas.
Since Dr. Y and I suspect that I may still have adenomyosis, and pain related to that, he also kept me on the letrazole and progestin pills.

Continued Recovery.
I’ve had some aches and pains which felt very similar to before surgery, but have to remind myself that I am still recovering. I had large sections of my body cut out and that takes time to heal. Slowly but surely my appetite is increasing, and my fatigue is decreasing. I still bloat though, so I’m not sure if that is going to end.

A couple of weeks ago, I did start having some joint pains with the cold weather, and with my continued migraines, my primary care physician started me on amitriptyline. I have not felt better in such a long time. There are days that are mostly pain free now, which I hadn’t had in over a year.

I’m not sure of Dr. Y got all of my endometriosis, or if any endometriosis will come back and I’ll need another surgery for it. And I’m sure at some point I’ll need a hysterectomy for the adenomyosis. And while I am not eager to have surgery again (boy did recovering with that Percocet really suck), I am glad I had it when I did. I can’t imagine getting through this semester with out it. And it’s so good not to feel absolutely awful all day, every day, anymore.