Hospital recap

Yesterday was the day I’d been waiting for. My surgery. My mom arrived the day before to take care of me and help me out around the house and with my pug, which is a great help. We had to get up quite early yesterday, as I had to report at the hospital at 8am. I was greeted by a very kind and sweet nurse and shown to my room. She took my vitals and explained what the general schedule for the day would be. My mom staid for a while longer to chat, then left me to relax for a bit. 

 

 

At 10am a nurse and orderly came to collect me and take me to pre-op where an IV was placed in my wrist. That was honestly the worst part, and the nurse placing the IV was very understanding. I was then wheeled into the OR where I was introduced to the two residents and an intern who’d be assisting, as well as the operating assistants and anesthesiologist. My doctor arrived when I was being positioned on the operating table. It was quite a relaxed atmosphere. I asked my doctor to be mindful of my sidepiece when cutting, and then the anesthesiologist gently let me drift off. I remembered the cold yet burning feeling of the anesthesia from my last surgery, so was prepared for that, but I didn’t even notice it this time. 

 

I woke up in recovery around 11:45am, doped out of my mind on morphine. I could see the monitor next to my bed and noted my blood pressure, heart rate, and saturation. A nurse offered me a popsicle (to soothe my throat after the breathing tube was removed) which I gladly yet dopily accepted. The nurses in the recovery room must have some laughs during the day, seeing all these doped up people passing through! 

 

 

I was taken back to my room around 12:30pm and offered some tea and a light lunch. I was happy to sip my tea from my reclined position, but when I was moved more upright to try and eat, I found I was still nauseated from the anesthesia. I dozed for a bit, then tried again to no avail, so one of the nurses put something in my IV to help with the nausea. My doctor came by after that, and told me that she was very pleased with the surgery. I commented on how quick it was and she agreed, explaining that the removal of my ovary went smoothly. She had then looked for new lesions to remove and any adhesions present, but found none of the former and only a little bit of the latter, so she could close up pretty quickly. This is really good news, because it means that all lesions present were removed during my first surgery five years ago. It also means that my treatment plan of Mirena IUD and lynestrenol has prevented recurrence, and the changes to my diet have also helped limit inflammation. Quite a win in my book! 

 

My mom arrived shortly after, and around that time I was finally able to sit up and eat a bit. I was told that I was allowed to go home if it’d eaten, drank, and had gone to the bathroom. When I felt like that last task would be feasible, I waddled to the bathroom, assisted by the kind nurse. That short trek proved quite exhausting, and I had to lie down again after that to let the nausea pass. After that, I was able to get dressed, and around 4pm my mom wheeled me out of the hospital and to my car. It was a short drive to my apartment, but still quite exhausting, so I was glad to sink down onto my couch and take a painkiller. 

 

 

For the next few days, I’ll take it easy and let my mom pamper me. I’m also enjoying my pug’s snuggles. Hopefully I can start weaning off the painkillers around the weekend and start becoming a bit more mobile next week. My best friend visited today, and my apartment is currently filled with colorful tulips. 

Treatment options

Once diagnosed with endometriosis (and for me, after a while, adenomyosis as well), it is key to find a treatment plan that works for you and your needs. One important aspect to keep in mind in this is whether or not fertility is important. For me, it isn’t, but for some women, it can be a deciding factor in choosing one treatment option over another. Regardless, it is important to discuss this with your doctor as soon as possible, so they are aware and can treat you accordingly. 

 

Let me be clear, as of yet, there is no cure for endometriosis or adenomyosis, because we don’t know what causes it yet. As mentioned before, research is still ongoing, and currently pointing towards a genetic origin manifesting during gestation, but a definitive cause is yet to be identified. Because of this, treatment is currently limited to treating the symptoms and improving quality of life. 

 

There are several options here. Please note that I’m no medical expert. I am merely listing the options known to me. Always consult your doctor before making any medical decisions. 

 

  • Painkillers 

Over-the-counter painkillers may offer relief initially, but there is a risk that over time, stronger painkillers are needed. Some painkillers can cause stomach issues, so caution is advised here. 

  • Hormonal medication 

These fall roughly into two categories. There are the hormonal medications that regulate the menstrual cycle, such as birth control pills, the depo shot, or an IUD with or without hormones. If your symptoms follow your cycle, these may offer relief. They will not stop lesions from forming or spreading, though. Then there are the more aggressive hormonal drugs, such as Lucrin/Lupron and Zoladex. These cause chemical menopause, and are not without risks. 

  • Surgery 

To date, this is the most effective way of both diagnosing the condition as well as removing it. Laparoscopic (keyhole) surgery is most commonly used, but more invasive surgery might be needed, depending on location and severity of the disease. During such a surgery, ideally the surgeon will look for lesions and will remove them with clean edges. The best method to do so is excision, as ablation (burning) may leave disease behind.  Please see the graphic below for more information.

Sometimes, it is necessary to remove one or more affected organs. Please note, though, that hysterectomy is only a viable option to remove adenomyosis, as disease presents in the uterine muscle. For endometriosis, removing the uterus will not remove the disease, as it is found outside the uterus. 

 

What treatment options have you found work best for you? 

Final prep and packing my bag

Today is the last day before my surgery. I’ll have to report to the hospital bright and early tomorrow, so that means no more food after tonight. I’m allowed a cup of tea when I get up, but that’s it. Past experience has taught me that not being allowed to drink is actually worse than not eating, so I intend to enjoy that cup! 

 

I spent the weekend cleaning my apartment and getting most of my laundry out of the way. I also went for a big shop to get groceries for at least a week, although my mom will be able to get anything we might still need over the next few days. This morning, I changed my sheets, so they’ll be nice and fresh when I get home from the hospital tomorrow. I also set out my comfy outfit for tomorrow and packed my hospital bag. 

 

I spent the rest of the day running some errands before going home and relaxing with my pug. He’s a real snuggle bug! My mom is en route, so I’ll pick her up from the train station in a bit, and that’s that. Signing off for now, and will report back on Wednesday. See you then! 

Having fun is tricky with chronic illness

There is a handy way of explaining energy levels and how your energy is used in the chronic illness community. It’s called the spoon theory. This article offers a nice explanation of it. With endo, my body is constantly fighting off inflammatory reactions, which cost a lot of energy. As a result, I deal with near chronic fatigue. On a regular day, I am okay in my spoon supply, provided that I don’t have to run any unexpected errands. When faced with a busy social calendar, I have to plan accordingly, and may have to forfeit on an event or invitation, in order to preserve my energy.

 

A change in medication can have a large impact on this. About two years ago, my regular medication was unavailable (there was a country- if not worldwide shortage) so I was temporarily prescribed a different kind. Same active ingredient, same use and dosage, but different additives. I felt horrible. I’ll spare you some of the more intimate side effects I experienced, but what’s relevant to today’s post is that it affected my energy levels in a negative way. My fatigue worsened to the point where I barely made it through a workweek, and spent most of my weekends sleeping to try and replenish my spoons. I would count it a good week if I got a few household chores done, and meeting up with friends or taking my pug to an off-leash area was a challenge. Needless to say, I was relieved when my regular medication became available again and I could stop taking the substitute.

 

For me, and for many others with chronic illness, it’s not just a matter of depleted energy supplies, though. There is also the issue of symptoms flaring up, as well as ever present, if fluctuating, pain levels. When pain has kept me awake most of the night, I start the day with fewer spoons than usual. Tasks I can perform on a regular day would then result in a deficit, so I have to pick and choose what I can and cannot do.

 

It’s even more inconvenient when pain flares up while I’m already out (at work, at a party, with friends, anywhere that is not the comfort of my own apartment). Countless times I’ve had to cut a night out short, or switch to water and painkillers in order not to. My friends are very understanding when it happens, but I can’t help feeling guilty for going home early. Alcohol and fizzy drinks may play a part in this, so I’ve tried to limit my consumption. However, I do enjoy a drink when going out, so I’ve made it a point to try and discover which beverages cause issues and which don’t. For example, fizzy drinks are problematic due to the carbonation as well as the sugars in it, so I opt for Coke Zero and alternate with non-carbonated drinks. Cider poses less of an issue than beer, so when available, I’ll have some cider. I do enjoy a beer or two, though, but more on that in a later post.

 

In conclusion, when a person without health issues goes out to do something fun, they hardly have to think about it. As a woman with a chronic condition which includes pain and fatigue, I have to carefully plan my outings, have contingency plans in place, need to mind my food and drink intake, and have to keep in mind that I might have to cancel at the last minute or cut the outing short.

 

Chronic illness isn’t a walk in the park – even those can be tricky for us.

Grocery shopping before surgery week 

These last few days before my surgery are all about preparations. I’m making sure most of my laundry is done, my house is cleaned, and I’ve stocked up on groceries. Originally, I had intended to get the grocery shopping done today, but my bed was much too comfortable, and I had a lie-in instead. I already compiled my grocery list, though, so there is a point to this post. 

 

For starters, I won’t be able to go shopping for a while after my surgery. I’m estimating at least a week before I can venture out, possibly longer to go on my own. So I need to stock up. Also, my mother will be staying with me for the week to help me out, and I need to get some items I normally don’t buy. For example, she likes to have bread for breakfast and lunch, whereas I try to avoid it as much as I can, because it can cause irritation to my bowels, which results in terrible cramps. 

 

After surgery, it may be a day or two before my bowels are back in business again. It’s wise to plan accordingly, and not eat any spicy foods until then, or foods that can sit heavily. Tomorrow or Monday I’ll cook a nice vegetarian tandoori, which I (read: my mother) can heat up, and add some rice. It’s easy and tasty, and can be frozen if need be. 

 

My parents enjoy quite traditional dinners of potatoes, veggies, and meat. Whenever I visit and join them for dinner, my mother will cook a vegetarian burger or similar for me to substitute the meat, but she is not used to cooking without meat. She is open to trying vegetarian foods, though, so I will make sure to stock up on different dishes to prepare. Aside from the aforementioned tandoori, I’ll get some salmon to grill (I don’t eat meat, but do enjoy fish) with steamed cut vegetables and rice. Recently, one of my best friends shared a delicious recipe for a curry with salmon and sweet potatoes. I may send my mother on a grocery run and share it with her. 

 

Do you have any other tips regarding post-op diet? 

Hanging up my heels

As some of you may know, perhaps from previous posts or following me on my other social media, I’ve been doing pole for around 7-8 years. It’s a full body workout which simultaneously builds strength, increases stamina, and improves flexibility. I love it.

 

I started out doing pole sport, which focuses on techniques and is what you’ll see at national and world championships. There’s a plethora of styles, though, and over the years I’ve taken workshops in several. About a year ago I made the switch to exotic, which focuses more on choreography and requires heels. I currently own two pairs of Pleasers; they’re fabulous and oh so comfy!

 

The thing with pole, though, is that it engages your core rigorously, and with endo, that can be an issue. When I’m flaring up or ovulating, I can’t pole. Aside from that, I’ve always had trouble with my abs, particularly my lower abs. My previous surgery wasn’t kind to them, nor my pelvic floor muscles. And thanks to extensive adhesions, my pelvic mobility and flexibility leave much to be desired. I continue to train those muscles and areas, and have workarounds for certain moves, but I’ve come to accept there are certain moves and tricks I’ll probably never be able to do.

With my surgery this coming Tuesday, tonight was my last night in heels and doing pole for a while. We started a new choreography and practiced some techniques which will be used in it. Sometimes it takes me a while to get the hang of them, because certain techniques tend to go against my body’s instincts. It was a very productive class and I enjoyed the choreography. Afterwards, my instructor took some pictures to mark the occasion; I posted a selection below. 

 

It’ll be a while before I’ll be back to pole. First, I have to go through my basic recovery, then I’ll start physical therapy (more on that later) to help my abs and pelvic muscles heal and strengthen. I hope to be able to start pole again in May, but it’ll depend on my body’s recovery. For now, memories will have to suffice. 

Bring it, bitch!

Before I delve into the topic of today’s post (which I had actually scheduled for yesterday), I must address something. I promised daily posts this month, but already couldn’t deliver on the second day! Not for lack of trying, mind you! You see, my laptop decided to die on me. I’ve had it for about 7 years, and it’s been getting slower over the last 2-3, so it was bound to happen at some point. This week, however, it decided to freeze, then not let me log back in. I kid you not, on Monday I spent almost 3 hours trying to log in so I could post the update on my surgery date. On Tuesday, after over an hour of trying to log on, I was able to post, but then it froze again as I was trying to back up my files. I finally gave up and ordered the laptop my best friend’s husband recommended. Said husband was able to retrieve my files and here we are. So yeah, sorry about that. 

 

Anyway, to get to the actual topic of this post. “Bring it, bitch!” That’s what I said to my left ovary about three weeks ago, when I was ovulating on that side for the last time. It felt so good saying that, knowing that the bitch in question is being removed in just a few short days. 

 

Let me walk you through a typical left-sided ovulation for me. Usually, it doesn’t announce itself, but sometimes I’ll feel some twinges the day before. Because my cycle is very irregular, I can estimate when I’ll ovulate, but it can easily be up to 3-4 weeks later than expected, or two weeks earlier. This time was about two weeks later that my anticipated date, which had me quite anxious. In the end, it happened at the least inopportune time, because I was gearing up for Carnaval a week and a half later (more on that in a later post). It would’ve sucked having to deal with the after effects during that event. 

 

So, this time, I felt some twinges in my left lower abdomen throughout the day, radiating slightly into my leg. During the night, the pain intensified and kept waking me up. Often, I have to call in sick when ovulating, but this time I was able to pull through on painkillers, albeit very fatigued. I took it easy the rest of the week and was able to work out on Friday. While this was mild in comparison, it still took me until well into the next week to recover somewhat from the additional fatigue. 

 

Yeah, she was a bitch, but I came prepared and knew it was going to be the last time. A week later I got my surgery date. 

Surgery date has been set

This post was actually intended for yesterday, but computer issues prevented me from posting. So you’re getting two posts this evening!

Yes, you read that right: I’m having another surgery. It’ll be my second laparoscopy, and my second endo-related surgery. It will take place on March 10th, just over a week from today. I requested a surgery date in early March in order to best match some things I have going on. For one, it would allow me to still celebrate Carnaval (more on that in a later post). For another, having the surgery in early March will allow me to recover enough in time for one of my best friends’ wedding in May, in which I am her witness/maid of honor. A later surgery date would seriously limit my participation in that important day.

 

Why have another surgery? The main reason is that my left ovary is being removed. A small biology lesson here: during ovulation, the ovary swells up and increases in size. Usually, women hardly notice this, as the ovaries have plenty of room. My pelvis, however, is filled with adhesions, causing my organs to stick together. This means that my ovaries have less room to swell up. The one on my right is fine, but the left one pushes against the surrounding organs as well as the peritoneum (tissue lining the pelvis). This causes excruciating pain (more on that later this week) and results in me having to miss work or social engagements at least six times per year. This is definitely something I can live without. As I am not using that ovary, and don’t intend to, I asked my doctor to remove it, to which she agreed. During this procedure, she’ll also remove what lesions she can find and access, as well as try to remove adhesions throughout my pelvis.

 

I was notified of the surgery date about two weeks ago, which was just before Carnaval and about a week after my last ovulation. I was so relieved! I didn’t want to go into Carnaval not knowing the surgery date, or risk missing the phone call, so knowing it before that event was important to me. It also allowed me to notify work well in advance and make some necessary preparations. I’ve scheduled a thorough house cleaning, a car wash, and extensive grocery shopping the weekend before. I know when my last workout will be, which is rather bittersweet, but I know I’ll get back to it once I’m recovering.

 

As soon as I wrote down the date on my calendar, I called my mom. Not only is it important to inform my family and close friends (I sent out a WhatsApp message), but my mom offered to come help me on the day of the surgery and my first few days at home. I was glad to be able to inform her well in time, so she could also make the necessary preparations.

 

Now I’m counting down the days until next Tuesday!

Dusting off the blog

Hi everyone! I’m still alive and kicking, though I must admit to having neglected this blog for quite some time. However, if you follow me on social media, you’ll have seen me post about endo and share interesting articles quite regularly.

 

This EndoMarch, I will be trying to post daily blogs. Some will be longer and more educational, while others may be shorter updates or contain more lighthearted content. All will be related to endometriosis and adenomyosis. And the reason for this year’s blog will be revealed tomorrow, so stay tuned!