Adenomyosis

Hysterectomy: Day 4 – Week 1 Post-Op

Angel BoucherLeave a comment

I made it one week! 5 more weeks to go, unless I’m cleared sooner! Time is flying, but also moving astonishingly slow!

Day By Day Breakdown

Day 4 was exceptional! If I didn’t know better, I would’ve thought I was normal! I did some small things around the house and took a modest walk to help with the movement of the leftover gas inside. I could still feel it around my chest and rib cage. Other than that, day 4 was amazing! It was the first hopeful day I had!

Day 5 was arduous. I had such incredible pain and muscle spasms. I couldn’t tell what was normal, what was hurting, where it hurt, etc. It just hurt all over. However, my brother did come by to help with laundry, dishes, taking the trash out, etc. While he was here, I got to play with my niece. She’s almost 7 months old, and seeing her giggle made me smile. I needed it! I did end up emailing the doctor today to check if some things were normal. Apparently, they are. I cried several times today. I didn’t want to move at all. My body felt like a million knives were being stabbed into any given area at any given time. I ended up calling the doctor today because of how bad things were. I also ran out of pain medicine today, which didn’t help!

Day 6 was better. It was like a marriage of days 4 and 5. I was able to do a little bit around the house (dishes, pick up trash around the house, bring things to the outdoor trash can, etc.). I was proud to have only taken two lesser pain pills during the day – my doctor prescribed me a different kind. I’m trying not to take them for several reasons; however, if I need them, I will. I have no addiction in my background, but I don’t want to risk it. I know I also need to build up my pain tolerance, rebuild my muscles, and do more (not too much) without the medicine. I need some normality back in my life. Later in the day, my mom brought me out to dinner tonight. She drove, as I’m not cleared yet and don’t want to risk it. We had a good laugh at dinner that hurt my surgery site, but it was worth it!

Day 7, one week post-op, was a slightly smaller version of day 5. I slept an absurd amount. I kept having spasms, and everything just felt heavy. I tried to do some things around the house, but everything was so exhausting. I received a call that my new meds were ready, so I had my brother drive me to get them. I forgot my seat belt protector and the seat belt felt awful on my site. The spasms radiated through my back and legs. I would stop breathing at times to catch myself from cussing. As it lightened up, I would try to do focused breathing techniques. This was also the first day I didn’t have a single bowel movement. I hope tomorrow there is one, as I don’t want anything damaged from the swelling due to the lack of one. I hate talking about things that should be so private, but it’s a reality of the surgery.

Overall Assessment

Well, part of me was expecting a much harder recovery. I envisioned being in bed, crying nonstop, beginning for it to go away. Although I’ve had a few rough days, it’s gone fairly well. I find myself, at moments, being incredibly proud of my body. I’m impressed that I can go through such trauma and be doing as much as I am.

On the other hand, I’m incredibly frustrated. Doing this alone isn’t easy, especially mentally. When you’ve lived so long being independent, you feel hopeless when you can’t even do the dishes. Little tasks take so much effort and energy that you begin to fall into a dark spot mentally.

I’ve cried more in the last week than I did in the last year combined. On day 5, I cried five times within two hours. My emotions are all over the place. Very rarely have my tears been from pain. Most of my tears have been from the frustration of not being able to do things or see people. I hardly saw the outside in the seven days. It’s very isolating! I had a million people check on me, which made me feel good, but it wasn’t the same as seeing people, being able to walk to get your mail, handling laundry, etc. It’s sad when you get “proud” because you could stand the entire shower and not use a shower stool.

One thing for sure is this is a very humbling experience. It let me know how much I’ve taken for granted. It also lets me know I don’t give myself enough credit for what I do every day. I should be extremely grateful to be able to do some of my daily tasks. There are people in this world that can NEVER take the trash out, can NEVER do laundry, etc. It may not be fun to do, but I’m glad I can do it.

I’ll probably post weekly updates until I’m cleared, then go every few months. I’ve heard others have post-op concerns up to a year later.

The good feeling I have, though, is that not a single person I’ve talked to has regretted this decision, especially those with endometriosis and adenomyosis. As of now, I’m not regretting it. I’m looking forward to a life that I can live and function with minimal problems.

Hysterectomy: Day 2 & Day 3 Post-Op

Angel BoucherLeave a comment

Day 2 Update

Oui. That’s all I can really say. Being at home is much harder than having help in the hospital. Whether it’s making sure you stay on top of medicine or just getting up, life at home is hard – especially when you live alone.

My internal alarm clock has been doing a great job at waking up in time for medicine. I set alarms just in case I do sleep through it, which I haven’t yet. It’s a little rough waking up every two hours (about), but I’d rather stay on top of medicine than be in pain.

Binder… I took off my binder last night to “air out” my stomach. I started getting itchy and irritated where the Velcro hit. While I “aired out,” I alternated a heating pad and ice pack. Again, I didn’t feel much relief, but it was still helpful in some ways. I placed the binder back on for bed, as it’s recommended to help ease the movement of internal organs, and gas, and provide support to missing pieces. I woke up several times with the Velcro stabbing and irritating my skin. I took it off around 6:00 am this morning during one of my dosing times. I readjusted it on top of my clothes to see if it would help with the skin irritation. It does, but I can’t seem to get it as tight as I would want it to be. The nurses made it so tight. Maybe it’s because I was more swollen in the hospital than at home.

I also woke up several times itchy. I’m not sure what’s causing it. It’s all over my stomach, sides, and legs. I don’t think it’s a reaction to medicine, because I have it all the time. I have these little raised purple-red dots all over my abdomen. I’m trying not to scratch or touch them.

My brother was extremely helpful today. He went to the store for me for more water (the sports cap Ozarka is a life saver when stuck in bed), ice, real food, and Tylenol. Luckily, I can have solid food. I’m having bowel movements, so there’s no concern about being backed up.

For sleeping, I’ve been holding a pillow to 1) ensure my sweet kitties stay away from my surgery spot and 2) in case I need to sneeze, cough, clear my throat, etc. I’ve also been sleeping with one between my legs (I’m a side sleeper). I underestimated how much this would help. I may not get rid of this when recovery is over!

I still have incredibly painful gas build-up inside of me. Even with passing gas, I feel the movement of gas in me. It is insanely uncomfortable. It is especially so because of the fact that I can’t just “push” like normal. I have to be careful about the pressures I induce on my surgical site. Because of that, I’ve been moving and trying to find other ways to release the gas. Most women who have the surgery complain about the gas being in their shoulders and such. Mine has been all abdominal. I had one day where it was trapped under my rib cage, but that dissipated quickly. I guess that’s why they emphasize that every surgery is different because every body is different.

Speaking of different, I started sweating last night. I can normally tolerate my ac at around 74 degrees. However, my ac was on 68, and I was sweating. I’m not sure if that’s due to the hot flashes and hormonal changes, the pain meds, or something unrelated. The doctor told me the symptoms of menopause could show up in days or not for months. I guess time will tell! I’m off to take some more meds and take another nap until someone can swing by to help a little.

I showered. It wasn’t easy, but it wasn’t miserable. It definitely felt uncomfortable and difficult with lifting arms. I’m glad I got the shower, though. It didn’t really help with the itchiness, but it did make me feel cleaner. I have a massive fear of infection, so I want to make sure I am as clean as possible. I barely scrubbed though, as I was in pain. However, I made sure to focus on the abdomen area getting clean.

I stayed awake most of the day, surprisingly. I alternated between a recliner, the couch, and walking. My boredom is definitely getting the best of me. I also alternated between ice and heat. Heat feels way better than ice, but they’re both really helpful.

Day 3 Update

I woke up with some pretty rough pain this morning. I don’t know if I “overdid” it yesterday or if it’s normal to be back and forth in pain. After a couple hours, I felt much better though. Part of me thinks it’s just the “tightness” of first waking up (like being awake awake).

I’m still on all pain meds, and I’m still taking them on schedule. I’m honestly a bit worried about when I run out of pain meds. I’ve been very fortunate in not having the side effects of pain meds (like constipation). I also know I can’t live on pain meds forever. Aside from that, I honestly hate taking medicine unless I absolutely have to.

I had a lot more sweats today. Again, I’m not sure if it’s related to the medicine or if it’s a sign of hot flashes. It could be the heating pad, too. It prompted me to buy a cooling blanket, a fan, and an ice neck thing. I figured, either way, I’m going to get hot flashes eventually and could use all items!

I took a good, deep shower today that included washing my hair. Since I felt like I could almost stand straight, I thought it would be a good time to wash the gross hair. I’m at about 94% straight when I stand. I had to sit a few times during the shower because standing for long periods is exhausting.

I have a lot of bloating, soreness, and tenderness. It still feels incredibly heavy (like a ton of bricks trying to fall out of me). Despite that, I didn’t wear my binder today. I thought maybe it was causing the reaction in my abdomen. I also know I need to work on rebuilding those muscles. I’ll probably wear it later just to help compress some of the internal organs into place.

Internally though, I feel so much energy. I was on the couch thinking about how I wanted to do a full workout. I know better. I’m not going to do it for several reasons, but I just found it interesting that I’m so energized this soon in my recovery. At the same time, I’m completely exhausted. I sleep a lot. Simple things like standing to make food or a drink take so much energy. It’s weird how the body can switch so quickly between tiredness and energetic.

One thing I noticed about myself is I am EATING. I can’t seem to keep my hands off of food. I don’t know what is causing it (pain meds maybe, body needing recovery energy, etc.). It’s weird, and I don’t like it. I’m not even getting sick from overeating. I don’t have to be hungry to want to eat. I don’t like the feeling, especially as someone who lost so much weight in the last 15 months. I almost have a fear of gaining it all back. I’m already bloated from the surgery, so this just freaks me out a bit more. It should be the last thing on my mind, but it’s a reality in my head.

My goal for tomorrow is to get out and walk in the morning outside. It’s so hot in Texas, but I need to work on working on other grounds. I live on a rocky road, so this will help me with making sure I’m not overconfident in my ability to walk around my house. It’s easy to walk around the same flooring all day, ever day once you are used to it. I just have to make sure I stay close to my house (maybe back and forth on my driveway and street). I also need to work on standing longer periods of time. Today really took a lot out of me just to stand. I’ll likely wear my binder tomorrow to help with not feeling so overwhelmed with my body doing those things.

I do have a follow-up hospital discharge appointment tomorrow. Because the doctor does not want me to drive, I did ask to switch to a virtual/telehealth visit. Luckily, they agreed.

I took some photos of my incisions. They look great! One of them is about an inch long, another is about inches long, and the last is in my belly button and I have no idea how big it is. I’m bruised in the area (expected). I have some redness by the bigger incision, but nothing that’s concerning.

I’m so ready to be healed. I’m ready to see how different I’ll feel. I’m ready to see if I’ll maintain the energy. I’m ready to see if I’ll be pain-free, truly. I’m ready for everything. I just have so much to look forward to. Every day that I feel better is a day I get excited about the future.

Hysterectomy: Day 1 Post-Op

Angel BoucherLeave a comment

Sleeping in a hospital is awful. You constantly get woken up. You hear a ton of noises that wake you. You’re uncomfortable both from surgery and the general environment. I spent much of my night taking 1.5 power naps with about 40 minutes of wake time between them.

At 2:45 a.m., they came to draw blood. I was luckily awake during that time, so my sleep wasn’t interrupted. I dozed in and out again until about 6:30 am.

Nutrition brought me breakfast (French toast, scrambled eggs, raisin bran, milk, coffee, and orange juice). I agree with just about everything except the coffee and some of the eggs. Hospital food is extremely bland, so it’s almost miserable to eat it. Believe it or not, it’s worse than school lunches! But hey… food is food. There are so many people without food. I’m just grateful I can eat, and I can eat solid food.

I was having bad pains this morning. Two types of pain: pressure (from the gas) and my insides (surgery). I knew I had to pass gas and/or have a bowel movement. Again, I normally wouldn’t talk about this, but it’s important to hear from those who go through it.

I tried to pass gas, and it took so long to get one out. I didn’t want to push too hard for fear of hurting something. After about 20 minutes of on-and-off slight pushing, I finally passed a little gas. It didn’t relieve the pressure, but I knew I was on the right track.

The doctor and nurse came in to check on me and give me more meds. The doctor ran me through some external photos of the uterus, ovaries, and tubes. He said pathology is “fileting” the inside to inspect and take pics. They said I was a perfect surgeon. Absolutely no complications and it was one of the easiest he’s done. He and the nurse said I was doing incredibly well. They said my pain tolerance has been great, and my ability to move has been astounding. I told them I definitely don’t feel like I’m doing well, but they assured me I’m doing really great. The doctor stated I’d be discharged.

The nurse followed up with my meds but was concerned about me going home. Due to my condition, lack of bowel movement, and no PT (physical therapy), she wanted to fight for me to stay another night. I told her I’m good either way. I appreciated her speaking up for me, but I could go either way. She told me she’d get back to me when she brought me my next set of pain meds.

I, again, lay in bed scrolling on my phone, typing this up, when I started to get red, hot, and itchy. I wasn’t sure if I was having an allergic reaction or if it was just my body reacting to the pain and pressure. I called the nurse just to let her look, as I figured they would have a better idea. The itchiness spread to my chest and arms but stopped there. It made me a bit more nervous about going home, alone.

As I waited for answers and Benadryl, the pressure of the gas was hurting so bad. I finally tried to bring my knees to my chest (I didn’t make it… but I did make them come up a bit). Within seconds, I passed gas. This one was huge. Again, I hate talking about this, but it’s important to know for those going through it. I was quite embarrassed, but I knew this needed to happen and knew more would happen. It felt like an overfilled balloon finally popped. Though I still had immense pressure, I was finally in a semi-comfortable spot. Within another two minutes, I passed gas again. This cycle continued about four times. Despite my embarrassment, I was so relieved. I could feel the pressure getting lighter. In my mind, I just kept hoping I got a bowel movement, too, but I’ll take the gas for now.

After the final passing of gas, I relaxed a bit. I watched some videos that made me laugh, which hurt so much. I tried to stop myself from laughing, but it was hard. I knew I needed the humor, too.

The nurse later came back and said what was happening was not a medicinal reaction. If it were, I would’ve shown signs with the previous dosing. That made me feel better.

Lunch was brought to me, and that was probably the most flavorful meal I’ve had since being here. I actually ate 90% of it. However, as I was eating, I started sweating uncontrollably. I was wondering if it was a hot flash, but then I felt my stomach rumble. I got excited and nervous. I ran to the bathroom. At first, I just had a lot of small gas. I was getting my hopes up. I knew I didn’t want to push, based on our earlier conversation. I “pushed” normally and only got gas. So I washed my hands and left. Immediately exiting the door, I felt a rumble and pressure on my rectum. I knew 100% that I was about to have a bowel movement. I walked back as fast as I could. I sat down. Again, nothing was happening. At this point, I was getting frustrated. I was sweating because of the bowel movement that wasn’t coming. I knew I couldn’t push either, but I was so desperate to get out. I sat there for what felt like an eternity, and I felt it move. With the slightest push, it finally came. It wasn’t easy, but it happened. I may have pushed a little too hard, as I saw some blood from my surgical site. I informed the nurse, and she told me that was normal. As long as I’m not straining, it’s okay to push a little.

After leaving the bathroom, round 2 hit. I couldn’t believe it. Literally, within 30 seconds, I needed to go again. Part of me was incredibly excited knowing I needed this. The other part of me was nervous about all the pressure I’d be putting on my surgical site. I let the nurse know again, and she said it’ll feel uncomfortable, and I’ll likely have bleeding or spotting for a few weeks. As long as it’s moving, that’s what’s important.

I only had about an hour left before I would be discharged. Again, part of me was excited to finally be on my way, to sleep in my own bed, to actually sleep, and to be by my babies. The other part of me was nervous about how I was going to manage on my own, especially showering. I won’t attempt that until later, though. I’m worried about how much pressure is too much pressure when pushing. I’m terrified of messing something up. She assured me she would go over all that before I leave.

At about 1:00 p.m., I was discharged. I was transported via wheelchair to the car lane. We immediately got my medications filled and went home. I felt some leakage from the surgery, so I was glad to be home to clean up. They said it’ll be normal to spot over the next couple of weeks.

Once home, I sat in the recliner to just sit. It felt good and crowded at the same time. I finally got up to take some of my meds and prep for a nap. I felt myself dozing off as I was trying to watch a show. I knew it was time. Sure enough, I slept a good 2 hours straight. Something I didn’t do at the hospital.

Waking up was a bit hard. Getting out of bed with no rails or support to pull up. It’ll be an adjustment, for sure. Once I was up, I took some more meds and placed an ice pack on me. I was so glad to have an ice pack that actually stays frozen. The ones at the hospital lasted maybe 10 minutes.

As the night winds down, my gas is building back up. I made a trip to our community mailbox and back (maybe 500 feet walk). It was incredibly difficult, but I knew walking would help rebuild some muscle and help move those gasses around.

I wrapped the night up with my pain medicine and anti-inflammatory. I have my alarms set throughout the day and night to keep me on track for medications. I’m not looking forward to waking up all the time, but if it means being in less pain, I’ll do what I have to do.

Hysterectomy: Backstory (Endometriosis, Adenomyosis, PCOS) & Surgery Day

Angel BoucherLeave a comment

I wanted to journal my experience with a full/radical hysterectomy as a 38 year-old childless woman.

I’ll try to make this as short and sweet without a ton of details. If you’re interested in more of a background or more detailed information, feel free to reach out to me.

The Decision

Since I was a teen, I’ve battled heavy periods. I ended up in the emergency room several times as a teen with excruciating pain every month. After trying birth control for a while, I finally saw someone else about the issue that was more trained on period pains. Through ultrasounds, they discovered I had cysts and believed I had endometriosis. The doctor put me on Lupron Depot to induce menopause to see if it would help with pains. It was a definite awful moment in my life. It worked, but it was only temporary.

After six months, the relief from pain was back. At that point, the doctor decided to give me a laparoscopy to determine if I had endometriosis. After a long surgery, it was determined I had a pretty severe case of endometriosis. Everything was removed, but it was told to me it’d come back. He said, at some point, I would need to consider a hysterectomy.

Fast forwards 12 years, the surgery in combination to long-term birth control, my endometriosis was pretty controlled, along with my PCOS (Polycystic Ovarian Syndrome). In November 2022, I began to have several breakthrough bleedings. By January, I was in the emergency department again. I was unable to stand straight due to pain. I was given fentanyl, and I was still feeling pain. In April, I was back in the emergency department for the same issue, but this time given morphine. In between those months, they discovered I had several fibroids and signs of adenomyosis. After seeing several doctors, it was recommended by many to have a hysterectomy. I had been preparing for this for years.

As a 38 year old woman, with no kids, it’s not an easy decision to make. I definitely took my time thinking about it. I finally was scheduled for June 23rd, 2023.

Second Thoughts

I have always had anxiety. Leading up to the surgery, I almost canceled a few times out of fear. Fear of pain. Fear of recovery. Fear of death (extreme, I know, but possible). What if it doesn’t take away my pain? What if something goes wrong? Am I making the right choice? Will they not find anything?

Thankfully, I attend therapy anyway for other topics, but we had a conversation about the surgery. It really helped to remind myself of why I was having it done. No one needs to live in chronic pain or on medication for their life to mask chronic pain. Anxiety over surgery is natural. It would be more worrisome to not be anxious about a major surgery.

As I arrived at the hospital, I cried. I cried from fear. I cried from the unknown. I cried at the loss of a big piece of me. I was immediately brought back into surgery to prep. My nurses were absolutely amazing and calming. I can’t thank them enough for their jokes and calming personalities. I can’t thank them enough for making me feel comfortable and supported.

Before I knew it, I was out. I barely confirmed my name and birth date before I was out. But then, I woke up. When I woke up, all hell broke loose.

Surgery Day

I woke up from anesthesia with excruciating pain. I was thrashing around in the bed, crying, and screaming. “It hurts so bad! Oh my God, it hurts!” I’ve had a laparoscopy before, but this was much more painful than every before.

I was almost immediately surrounded by nurses to make sure I was okay. They filled my IV with pain meds. Despite waiting and waiting, the pain never disappeared. I continued to cover around with tears flowing from my eyes, waiting to feel nothing.

At that point, anesthesia came back and gave me a TAP (Trans Abdominal Plane) Block shot. It’s similar to an epidural, but in the front. Apparently, they have me it in the OR as well when I was out. It’s meant to completely numb the area for pain. Getting it in was rough. They needed an ultrasound. Worst of all, I swear I squeezed the nurses hand strong enough to break it. I felt bad after, but she was incredibly understanding and supportive.

I was in PACU (post-anesthesia care unit) from about 9:30 a.m. to about 3:00 p.m. I can not compliment that nurse enough. She was absolutely amazing at everything!

Now, most people go home the same day for a hysterectomy. However, due to my background, they recommended I stay. I obliged, as I had my own concerns. I honestly think it was the best decision for me, too, stay overnight.

So about 3:00 p.m., they moved me to an observation room.

Immediately, they made me walk. Normally, I wouldn’t talk bathroom talk. However, I think it’s important to have this conversation for those considering a hysterectomy. So prior to moving beds, I knew I needed to figure it out.

Prior to surgery, I mentioned that I needed to pee. They told me “not to worry” because I would have a catheter. Apparently, they drained 1,000 CCs from me, which is about 33 fluid ounces. Thank you, teacher bladder!!

After surgery,  while in the PACU, they placed a Purewick system on me. Basically, you pee yourself, and the machine vacuums it up immediately upon sensing liquid. My first pee after surgery was horrific. It was as if someone poured gasoline on me and set it on fire. The amount of effort in that first pee was exhausting. It was incredibly embarrassing, too. Who urinates on themselves? Regardless if a machine collects it, it’s degrading. I HATED it, but it did save me from having to get out of bed.

So apparently, I had quite a bit of dark color. It wasn’t really concerning, apparently.

For those unfamiliar, a Purewick system looks like a thin pad that sits between the labia. When you pee, it auto detects it, goes into a tube, and gets vacuumed. 

I swear I have a purpose to this story.

After moving to my observation room, I had to pee again. It was hurting so badly with the pressure. So once I got into the room, and before they helped me into the new bed, I told them I needed to urinate.

They made me walk to the bathroom. That sounds so lazy, but it’s hard to understand unless you’ve been there. They told me they were taking away the Purewick system to encourage movement.

I wanted to be violent towards them for that. It felt like I had two cinderblocks attached to my non-existent uterus. It was absolutely horrible. I didn’t realize how hard walking, standing up, peeing, and even turning was. I can’t imagine what women with C-sections go through. I have a whole new respect for them, for sure.

But I did it with lots of help. Again, it took a while for the urine to finally come out. It burned again, but not as bad as the first time. It was ridiculous how much I peed. I swear I peed for about two minutes straight. Even the nurses were like, “Oh my… you really did hold it.” I told them, “Thank you, teacher bladder…” Those that know, know. They laughed. Humor is good medicine.

When I stood up with help, I saw a ton of blood. I was mortified, but I was also not surprised. Before I could address the concern, they told me it was “normal,” so I let it go.

Getting back in bed was another battle. Again, I didn’t realize what muscles I now couldn’t use to their full ability until I had to use them.

Once I got into bed, I started my clear diet: chicken broth, popsicle, and cranberry juice. I want excited for it, but I understood their decisions (wanting to tolerate food after anesthesia, preparing if something happens, etc.). I finished the meal and dozed in and out of sleep for a bit.

I woke up with a ridiculous pressure to urinate, AGAIN! Between the IV drip and me drinking, I just knew today should’ve been renamed to Urination Day. I don’t think I’ve ever peed so much before in my life. It was horrifying and oddly good. This round didn’t hurt at all. It was completely clear. No blood at all! I had hope!

I went back to bed and dozed in and out of sleep, scrolling on my phone, etc. That was until the nurse director came in. She wanted to check to see how the nurses were doing and making sure they informed me of everything. I let her know that these were the best set of nurses I’ve ever had and reassured her that everything was good. I brought up some concerns (Chapstick, ice/heat packs, Gas X, etc.). She handled each one almost immediately.

After she left, I scrolled through my phone, updating people, watching videos, etc. Eventually, I fell asleep for a little bit. The rest of the night went pretty well. My mom stayed either me until about 6:30 pm. I did as much walking as I could and used the bathroom as much as I could. I still haven’t had a bowel movement, which is a little worrisome. But the doctor said it’ll be like that, and I shouldn’t worry until I hit a week. Although, I’m not sure I could go a week without a bowel movement.

After a long day, I dozed in and out of sleep through the rest of the night. Sleeping in a hospital is no fun.