Pre- and post-op belly

March 9th, day before surgery.

March 10th, before going to hospital.

March 10th, waking up after surgery.

March 15th, after removing bandages.

First day back at work

Today was my first day back at work, and I’m exhausted! 

 

Due to Covid-19, I’m working at home for the time being, pending tightening or relaxing of government restrictions. Upsides: no commute, comfy clothes, and pug snuggles in between. Downsides: lots of people remotely logging in at the same time makes the server slower, which is killing my stats, as every action requires me to wait. So something that normally takes 2-3 minutes now takes 10, I kid you not. But I shouldn’t complain; I’m still able to work, and from home at that. Besides, everyone’s stats are affected. 

 

A few short weeks ago, I wasn’t able to even sit up straight. I was lounging on the couch, my pug at my side or between my legs, and my laptop on a tray on my lap. While relaxing, this isn’t a good posture for work, so I set up a work station at my dining room table. 

 

For now, I’ll be working 4 hours a day, with a break about halfway through. And that’s enough for now. It’s quite tiring having to sit up straight, especially when my abs are still weakened. My physical therapist advised me to try and maintain an active posture, to engage and help strengthen my abs. Nonetheless, I could feel my back muscles compensating, so was glad for my break and even gladder when my shift ended. 

 

Speaking of physical therapy, my therapist compiled a program of exercises for me to do at home, consisting of daily tasks and exercises. Based on how tired I am now, after working my scheduled shift, I think it’d be better to do my PT in the mornings, before work. That way, I won’t be too tired yet. Also, it’ll allow me to do a household chore or two after my shift. 

 

It’s an adjustment, I’ll give you that. 

What is adenomyosis and why didn’t I have a hysterectomy?

Aside from endometriosis, my doctor suspects I also have adenomyosis. I’m saying “suspects”, because the only way to know for sure is to perform a hysterectomy and examine the tissue. Not really something I’d be keen to do.

 

Where endometriosis occurs outside of the uterus, adenomyosis affects the myometrium, or the muscular layer of the uterus. It can cause severe menstrual cramps, lower abdominal pressure, and bloating before menstrual periods and can result in heavy periods. The condition can be located throughout the entire uterus or localized in one spot. This article offers a helpful overview of both conditions.

 

If you’ve ever had a transvaginal ultrasound, you’ll have seen that the uterus consists of several layers. In a healthy uterus, the myometrium is visible as a layer of solid gray. In my case, it looks like Swiss cheese. This, in addition to other symptoms, is why my doctor suspects adenomyosis.

 

As to why I didn’t have a hysterectomy; thanks to my body’s response to my current medications (Mirena IUD and Orgametril/lynestrenol), I don’t have a period. In addition to it saving me a lot of mess and money (no need for tampons – yay!), it also means my uterus doesn’t contract on a regular basis. I do get some of the symptoms, still, but not every month, and not as severely. You can read more on symptoms and possible treatments here.

 

Another reason why I didn’t get a hysterectomy, is that it is not without risks, side effects, and possible complications. One of the main complications is vaginal prolapse. Not something I’m eager to experience. Another side effect, depending on the kind of hysterectomy, would be menopause at 35. Also not something I’m looking forward to. It’ll be bad enough when it happens naturally; let’s not hasten its occurrence.

 

Because my adenomyosis is quite under control, I decided to tackle the organ that was, in fact, giving me grief. So, I had a unilateral salpingo-oophorectomy. That way, I keep the ovary that’s not being a raging bitch, which means no early menopause for me, while removing a great cause of regular pain.

Dealing with underinformed doctors

When living with chronic illness, especially an invisible one, you’ll be seeing the inside of a doctor’s office more than others. Depending on your background, you then might be able to better understand the medical jargon being thrown at you, but regardless, you’ll rely on your doctor for guidance. 

  

Women’s health has, historically, been undervalued and dismissed as hysteria. Women are often seen as the weaker sex, and their ailments due in part to their lower tolerance for pain and sickness. This, in itself, is laughable to me. We all now at least one man who is a stereotypical victim of the man flu, whereas women power through while being sick. Yes, as far as muscle-strength goes, men are, in general, stronger (although that’s a very strong generalization, I admit), but where mental strength and pain tolerance is concerned, women outshine men. 

  

However, due to this lack of regard for women’s health, typically female conditions are still under-researched and often misdiagnosed. Endometriosis and adenomyosis are two such conditions. The average delay in diagnosis is 7-10 years! There are several reasons for this, including (but not limited to): 

  

– lack of understanding: over a century ago, a doctor hypothesized that endometriosis was caused by retrograde menstruation, leading to the uterine lining flowing back into the abdominal cavity via the fallopian tubes. This theory is problematic for several reasons, the most important one being that endometriosis lesions are not the same as the endometrium (the uterine lining). You can read more about this theory here. Because a lot of doctors still follow this theory, they dismiss the symptoms in young women and girls, as well as postmenopausal women. Studies such as this one from 2010 (!!) are therefore important. 

 

– dismissal of symptoms: as stated before, women’s health has historically been dismissed as hysteria. I’ve lost track of how often I’ve been told that pain is part of being a woman, my pain threshold must be low, some women are just unlucky, or it’s all in my head. Not only is this harmful in delaying an accurate diagnosis, it is also mentally damaging, as it tells a woman not to trust her own body and her own feelings. It also leads to feelings of shame surrounding the topic, making women hesitant to discuss their issues. 

  

– lack of education: most medical students are offered minimal instruction at best, leading to them not knowing what to look for when dealing with patients. It is important that medical students, regardless of their specialization, are educated more broadly. That way, a GP can refer a girl presenting with vague symptoms to a gynecologist sooner, and a gynecologist will refer her to an endometriosis specialist when necessary. I’m lucky that both hospitals where I’ve been treated are teaching hospitals, and I’ve had gynecologists in training and/or working towards their specialism sit in on consults and examinations, even in the OR. 

 

– lack of non-invasive diagnostic options: the only way to offer a full and definitive diagnosis is still surgery, so an endometriosis specialist can look into the abdomen and pelvis to visually confirm presence of disease. This is quite invasive and requires a woman to take time off work for the procedure as well as recovery. Because of this, doctors are often hesitant to take this step, opting for less invasive paths first. While endometriosis and adenomyosis may show up on an ultrasound or MRI, these methods are inconclusive at best. For instance, my ultrasounds five years ago did not show any lesions, and my MRI only showed the larger ones, while smaller ones were found during surgery. There is research ongoing to hopefully develop a blood test to confirm diagnosis. 

 

All of this means that, as a woman dealing with endometriosis and adenomyosis, I have had to educate myself. I was lucky in that, once I obtained a referral to a specialist, I was taken seriously, but it took much too long before I was able to take that step. Either way, I felt it important to know as much as I could about these conditions, so I understand what my doctor tells me. This also allows me to explain things to my family, friends, and at work. I know that not everyone is in the position to be able to understand medical terminology and biological processes, so it remains important that doctors at all levels are educated, so we can be confident in their care. 

First week alone post-op

A week ago today was the first day I woke up alone since my surgery. My mom had been staying with me to help me out, and my dad had drove up to pick her up. While I was grateful for my mom coming to help, and I enjoyed her company, it felt good to be on my own again. 

 

I wasn’t able to bend over yet – that took a few more days – but I was able to do most things by myself again. Normally, I’d get my dog’s harness on in the hallway, but for those first days alone, I had him get up on the couch. Reaching into the lower cupboards of my kitchen, I’d get down on one knee. Still, I was glad when I was able to bend over again, as it also meant I could finally shave my legs again! 😊 

 

Heavy lifting is another thing that’s still an issue, and I’m taking it easy there. At home, it’s not much trouble, but I did worry for a moment when I went to get groceries. I intended to only get a few necessities, but ended up buying more than I expected. Upside: I won’t have to go to the supermarket for at least a week. Downside: I couldn’t lift the rolling basket onto the self-serve check-out, nor carry the shopping bag to my car. Thankfully, supermarket staff was very understanding and accommodating. One of them lifted my basket onto the check-out platform, and he arranged for a colleague of his to carry my bag to my car and place it in my trunk. I thanked them both for their assistance, and left a complimentary message on the store’s Facebook page. Back home, one of my neighbors was kind enough to take my bag out of my car and place it in the elevator. 

 

All in all, things are going as well as could be expected. 

Physical therapy

As part of my recovery, I intend to consult a physical therapist. Due to the current situation with Covid-19, however, I’m unable to go into a PT practice for now. Thankfully, the practice I approached offered to have a physical therapist phone me for a consult, which she did today. We discussed the issues I’m dealing with as well as my goals, and she’ll provide me with some preliminary exercises to do at home. Hopefully, we’ll be able to have an in-person session soon, too. 

 

For as long as I can remember, my belly has been my “issue”. I’ve always been self-conscious of it, and have also struggled with ab strength. My top abs are easy to engage, but the bottom ones aren’t as willing. Before my first lap, 5 years ago, I was able to do a layback in the pole, then proceed to do about 10 sit-ups. I was really proud of that, considering I struggled to even do a single sit-up on the floor a few years prior. However, that surgery was quite brutal on my lower abs, and I once again struggle with pole sit-ups. On a good day, I can do a few, but on a bad day, I’ll need a nudge to get back up from a layback. I also notice that, with certain exercises, my back muscles engage more, to make up for the lack of engagement from my lower abs. Not ideal. 

 

Another area that was affected by that first surgery is my pelvic muscles. It doesn’t affect my on a daily basis, but – and I apologize if this is slightly TMI – I do deal with stress incontinence on occasion. This means that, although I can still “hold it” like I’m used to, I have to be mindful with adding pressure, such as sneezing or coughing, on a full bladder. To prevent any mishaps, I make sure to go to the bathroom regularly, instead of trying to hold it. Embarrassing? Yes. So, I brought it up with the physical therapist, and she’s including it in her treatment plan. 

 

We’ll start with basic balancing exercises, then add in more strengthening ones as my recovery progresses. Over time, I’ll be able to include pole strengthening exercises as well. Hopefully that won’t take months. 

 

Wish me luck! 

Mind over matter

When dealing with chronic illness, especially invisible illness, you will undoubtedly encounter people who don’t understand. They’ll dismiss your symptoms, think you’re overreacting, and might even blame you for having to cancel plans. 

 

Some of us will be lucky, and will have people close to them who are understanding, and who will make an effort to learn more about their situation. These are people you can depend on when you are going through a rough time. These are also the people you should prioritize, in my opinion, when you’re feeling well. 

 

I’ve always considered the quality of my friends more important than the quantity. I’d rather have a few close friends whom I know understand my situation and who I can count on, than dozens of fair-weather friends. As a result, I have let friendships die out, and have even cut people out of my life completely. I don’t have the time and energy to deal with their negativity. Case in point: the co-worker who dismissed my flare-up as “just a bit of tummy ache”. 

 

When meeting new people, eventually it might be time to clue them in on your health issues. This depends on the type of relationship and your own comfort levels in discussing this. I’ve always been pretty open about my health issues, figuring people couldn’t possibly understand if they don’t know. I’ve had people comment on some of my posts that my openness has encouraged them to seek help with their doctor, or talk to their partner about their symptoms. If my being open has helped even one person, I find that a success. 

 

My close friends and direct family were there for me when I was searching for a diagnosis, and also when I learned I had endometriosis and adenomyosis. One of them is a GP, and I sometimes send her interesting articles which I think might help her in her practice. My parents struggled a bit with learning of my diagnosis, which is why I took my mother with me to some of my appointments, so my doctor could explain things to her. 

 

A few years ago I wrote a post about dating with endometriosis, and this is still true today. And in this post, a couple shares their experience. Being open about your condition, whether you’re already in a relationship when you’re diagnosed, or if you start dating after, is a great way of finding out how they’ll react in the long run. I’d rather know early on that someone can’t be supportive, than find out when I’m really invested. 

 

And just remember: those who mind, don’t matter, and those who matter, don’t mind. 

Comfort is key

I didn’t get around to posting this yesterday, because I was busy finishing up the story I’m donating to Fandoms for Australian Fires, a charity compilation to raise money for relief funds following the devastating bushfires which ravaged Australia over the last months. The deadline is coming up and I was on a roll, so I really wanted to get my story finished in time. Anyway, that means you’ll get two post from me today! 

 

When dealing with chronic pain, it can sometimes feel like things are out of your control. There’s no telling when the pain will flare up, or bloating will make you look five months pregnant. In such situations, the only thing you’ll want to do is curl up in bed with a heating pad and sleep it off. Unfortunately, that’s not always possible. 

 

On days when my regular clothes feel tight and restrictive, or I want to hide my endo belly, I resort to comfortable clothes. Right now, recovering from surgery, is similar. For the last 2+ weeks I’ve been living in sweatpants, t-shirts and hoodies. A plus from the current situation is that, when I go back to work next week, I’ll be working from home, so I can stick to this very relaxed uniform a little bit longer. 

 

When I have to go into the office, I can’t show up in sweatpants, so I’ll opt for my loosest jeans and a loose sweater. If it’s not too cold, I can switch it up with some leggings and a flowy top, or in summer an A-line or skater dress, which flares out from the waist. I’ll still feel a bit self-conscious, but at least any bloating will be hidden. 

 

Do you have any go-to outfits to feel comfortable? 

How endometriosis impacts self-esteem

Today’s trip to the supermarket by myself proved pretty tiring, so forgive me for not writing a complete blog post today. Instead, I’d like to share another blog I stumbled upon, discussing how endometriosis can impact your self-esteem. I found the post very relatable, and I hope you will too. 

 

https://endometriosis.net/living/self-confidence/ 

 

Don’t forget to check out the author info as well. 

Carnaval 2020

With social life grinding to a halt over the past few weeks, I thought it’d be nice to look back on the last big event I was able to participate in. Coincidentally, it’s the most important event of the year for me.

 

Carnaval. Or Vasteloavend, as it’s called where I grew up.

 

This post on Wikipedia offers some general information. Please note that I adhere to the Rhenish tradition of my native Limburg, not the Burgundian one of Brabant. They are vastly different. And yes, I’m quite regionally chauvinistic when it comes to Carnaval. I love the music, the elaborate, often handmade costumes, and the overall atmosphere. Outsiders might think Carnaval is just an excuse to get drunk and misbehave, but they have no idea. It’s about spending time together, leaving your worries for another day, and having a good time. Yes, you have a drink, and yes, you might get tipsy, but that’s not the goal.

 

As you can imagine, it would suck having to deal with a flare-up or other endometriosis related symptoms during Carnaval, so I make it a point to be extra vigilant during the event and the weeks leading up to it. This year I was confident my ovulation wouldn’t happen during Carnaval, but I did worry that it’d be late enough that I might still be dealing with its after-effects. Thankfully, that wasn’t the case. Still, I took some painkillers as a precaution every day, just to be sure. I also made sure to be as well-rested as I could be, and not to eat anything that might trigger or exacerbate inflammation.

 

Saturday morning, I dropped off my pug with my neighbor, knowing she’d take good care of him while I was away. I then loaded up my car and went to pick up my friend. Once we got in range of the regional radio station, we were able to get in the mood while listening to an outdoor event taking place to mark the start of festivities. We arrived at my other friend’s house a few hours later and got to relax for a bit. She had planned a delicious, and healthy, meal. We had also brought supplies for the rest of the weekend, including a block of cheese, which I cut into small cubes, so we would have something to nibble on while out.

 

That evening, we went to a small town I’ve been going to on Carnaval Saturday since I was 14. It’s tiny, with only a few bars, but its parade is legendary, and the atmosphere is great. As mentioned in an earlier post, I have to be mindful of what I eat and drink, and lately, beer and fizzy drinks have been an issue for me. I decided to just try one glass of beer to see if I’d have any issues. They usually occur pretty quickly after consumption. Imagine my surprise when I had no issue with the beer served in Saturday’s venue. It’s a regional brand, though, Brand Bier, and I suspect there is something particular about its recipe that doesn’t cause any issues. Still, I alternated with Coke Zero (with rum added, since we were dressed as pirates). We were able to get a lift in, but had to walk home, and I think the added exercise also helped.

 

We were dealing with a pretty severe storm that weekend, and most parades on Sunday were cancelled. Initially we were supposed to look after my friend’s baby boy, while she and her fiancé would join their marching band in the parade. With the parade being cancelled, we could relax for a bit and get ready at a more leisurely pace. We had two new costumes for this year, and Sunday’s was the first. I’m very pleased at how the combined look turned out. What do you think?

That afternoon, we checked into our hotel in the center of Maastricht. After dropping off our bags, we left to park my car at my sister’s (saves on parking costs) and took the train to watch that evening’s light parade. The storm had gone down sufficiently, that it wasn’t cancelled. It was beautiful! After having a few drinks in a local bar, we took the train back to Maastricht to join the party there.

 

Monday featured our most elaborate face paint, as we were dressing in colorful skeleton costumes. I was surprised how well it held, considering the occasional drizzle that day. Even my black lips held amazingly, despite sipping from my mug or flask. During Carnaval we always carry a flask with some liquor in it, to sip from or to add to our sodas. During regular nights out, this would be frowned upon, and you might even get kicked out of the bar, but during Carnaval it’s ignored, as you’re still getting your sodas and beers from the bar. Last year, we also bought some stainless-steel mugs with clips. A lot of outdoor events serve drinks in plastic these days, and we’d like to decrease our plastic use. The clip on it allows us to hook the mugs to our belt or purse when empty, and most bars will even rinse them for us! When you take into account that during such an event you have 10+ drinks a day, just imagine the amount of plastic saved.

 

Thankfully, these days it’s much easier to eat healthier foods during Carnaval. Neither my friend nor I eat meat, but we do eat fish, so we were happy at the availability of more vegetarian/pescatarian options. I had a dürüm falafel and some fries one night, a veggie McChicken, a vegetarian pizza, and a fish burger and curly fries. Add to that the yoghurts, fruit, and cheese we had brought ourselves, and our diet was pretty varied all things considered. Being able to nibble on some cheese or a cracker, and pacing our drinks, helped in keeping my belly calm and under control, despite the long days.

 

On Tuesday we donned our second new costume; we were dressed as woodland elves in green and purple. During Carnaval, there are a lot of zaate hermeniekes (“drunk marching bands”) and samba bands throughout the city, but on Tuesday there are even more, as it’s set up as a sort of competition. Everyone wins, of course, but it brings a lot of music and atmosphere into the city. This year, they got André Rieu to conduct all the bands together. Maastricht also has the tradition of raising a large puppet, called ‘t Mooswief, on a pole on the Vrijthof, and on Tuesday evening, the puppet will be ceremoniously lowered again to mark the end of Carnaval. It’s quite the sight, with the large crowd, fireworks, and music. We weren’t ready to retire just yet, and were lucky to find a small bar near our hotel still open.

 

All in all, I couldn’t be happier with how it went. I had a great time, and, thanks to minding my diet, I didn’t have any flare-ups.