044 My Endometriosis Story - Part 2

I'm sharing part two of my experience with endometriosis today for Endometriosis Awareness Month! Including an update on where I'm at, how I'm managing things day-to-day, and also how people can support others in their lives who have endometriosis themselves.

Takeaways

• Endometriosis symptoms can be managed but not completely eliminated.
• Tracking menstrual cycles can provide insights into symptom patterns.
• Adjusting work schedules and limiting commitments can help manage symptoms.
• Supporting someone with endometriosis requires understanding, respecting autonomy, and educating oneself about the disease.

Chapters

00:00 Introduction and Recap
02:19 Effects of Medications
03:05 Waiting for Surgery
04:00 Managing Symptoms
06:18 Tracking Menstrual Cycle
08:05 Adjusting Work Schedule
10:18 Personal Growth and Coping
13:44 Supporting Someone with Endometriosis
20:30 Conclusion

Transcript

[00:00:00] Welcome friends, and happy Wednesday. I am back today to share part two of my endometriosis story. If you missed last week's episode, I re shared a recording that I had done back when I was first starting the podcast to give you a little bit of context about what my past with endometriosis has been like, what led me to getting a diagnosis and things like that.

So if you haven't checked that out, definitely go give it a listen. But today I am actually recording this episode on the very day that it is going to be launched. It's currently 830 in the morning. I am watching the sun come up through my office window. My cat is nagging me to pay attention to her. And I am also on the first day of my cycle, which I thought would be really appropriate for an episode during Endometriosis Awareness Month, where I'm talking about what my life is like right now.

So if you're ready for a little update and all the things that have changed since I first made that episode [00:01:00] and what my life looks like today, we're going to get right to it after the intro. Welcome to keeping it candid. I'm your host, Sandra Henderson, an international wedding and family photographer and business coach.

I help wedding photographers use systems to build out the back end of their businesses to gain control and continue to thrive no matter what life throws their way. And on a more personal note, I'm a strong eneagram 3 wing 2 who is obsessed with tacos, and my love for traveling combined with navigating chronic illness life are just two of the many things that drive my passion for all things systems, workflows, and beating burnout as a business owner.

Join me every week for a candid behind the scenes look at what it's really like working as a wedding photographer, where I'll give you actionable steps to take your business to the next level. Absolutely no fluff here, friends, so go grab your favorite notebook and pen and let's dive into this week's episode.

Towards the end of last week's episode, I was talking about how I went on to medications for endometriosis that gave up my fertility [00:02:00] and were meant to help me manage the symptoms that I was having from endometriosis. I was told that these medications were putting me in a menopause and that stopping my period and managing my hormones was going to control the pain and things that I was experiencing throughout the month.

And Well, part of that was true. I learned after I stopped taking most of the medications that it did not, in fact, put me into menopause. These hormone medications stopped my body's ability to be able to produce estrogen while I was taking them. And so that's what stopped my period. It also gave me horrible side effects like hot flashes and all the things that people experience when they're going through menopause.

But as soon as I stopped taking them, my period came back, but the hot flash just stuck around, and for a while, it was a whole mess. I wasn't sleeping well, all these things. It was like having the worst of both worlds between having a period and being in menopause. I hated it. So when I finally [00:03:00] got in to see an endometriosis specialist last summer, which would have been July 2023, more than three years after my initial referral was sent in to the specialist, I was finally accepted and that doctor had me stop taking all medications that I was on.

The reason for that is because we were trying to get my body back down to a base level to see how it Acts on its own without any sort of hormonal intervention so that we can get a better visual of what's happening before I go in for my next surgery. My next surgery is currently up in the air and when that's going to happen.

I'm on a waitlist and we're hopeful for 2025. This just kind of paints a picture of what our healthcare Looks like in Ontario and in Canada, I'm not going to get into a whole tirade about it. I totally understand the privilege of having access to free health care, but if it's something that I can only access every few years and it's that difficult to get care, then.

[00:04:00] Something needs to change, right? But anyway, side tangent, little soapbox there. And so going off all these hormone medications and getting my body ready for surgery has meant that my period has come back. I didn't have it for a few years, and again, all those medications that I was taking, that was kind of the goal, was to stop my period so that I could at least have a few days where I had a little bit of relief from the symptoms I was feeling.

I will say, there's no such thing as relief when you have endometriosis. There are some good days, there are some bad days, but even the good days, you still have symptoms and you are still in pain. And so, I'm glad that I took them. I think they did serve a purpose, if even to just give me time to learn more about the disease and how it impacts my body, how it impacts my daily life.

, but now that I'm off them, I would say that I would never go back on them if I had another choice. If there's anybody here that's listening that has endometriosis or is on [00:05:00] their own journey to getting a diagnosis, please don't take that as any sort of you should or you should not go on any hormones or medications yourself.

I think that especially I think that with anything in life, you really have to do what is best for you, and I double down on that when it comes to your health. There are a lot of passionate people in the endometriosis community, and a lot of them will swear up and down that you should never touch a lot of these medications, but I have no regrets.

I think that some of the medications that I took, I made an educated decision on what was best for me, and while some people would never consider it, I credit that to giving me the ability to get some rest and start being able to walk properly again and stop being able to eat and start being able to eat properly again back in 2020.

And so even though I don't want to go back on them in the future, I [00:06:00] have no regrets. So I just wanted to make that very clear for anybody who is listening, because I know how disheartening it can be when you think you've found an answer and someone tells you that it's not. a bad option or whatever the case may be.

, so just remember, ask your doctor questions and talk to your support system and just make whatever decision is best for you. Since my period has come back, I do track my cycle even more religiously than I did before. I have talked about this a lot on the podcast, but I've actually started using an app called Moody, I call it moody.

I think it's like moody month cycle or something like that is the full name of it, but it's available for iPhone and Android systems. , I'm not an affiliate in any way. I'm just legit obsessed with this app. There's so many statistics. It's so many customizations. There's graphs and info and I just nerd over it so much highly recommend it for anybody who gets a [00:07:00] period.

It has really helped me. Just have a better understanding of what my hormone levels are doing throughout the month, how long each phase of my cycle is, which I used to think that each of the four phases was seven days. I've learned that my winter, which is when I get my period, that part of my cycle is only about three days.

And then the next section is actually ten days. So that has given me a lot of clarity on how my body feels on different days, and I am very particular about making sure that I'm staying healthy. Scheduling on days that I typically feel well and not scheduling on days that I typically feel awful So like I said today is day one of my cycle I've known for the last few weeks that today I was going to expect to have low energy Quite a bit of body pain I have been wrapped up in my heating pad all week long because it feels like there is a vice grip around my abdomen And so this week my schedule is really light and clear I had a couple of meetings yesterday and I have [00:08:00] to forward and launch this podcast.

But other than that, I don't have any deadlines on my calendar. And that is super important to make sure that I'm giving my body the time that it needs to rest and to make sure that I'm giving the best version of myself to my clients. I've also really cut back on how I am booking my calendar. I limit the number of sessions and things like that that I'm taking on.

, but I'm taking on even less weddings than I have previously. Because what used to be a one day wedding hangover for recovery, the day after now is about four days or so, which leaves me absolutely no time in between if I were to do weddings every weekend. So I've really had to cut back on that. , and I limit myself to one full day of sessions per week.

So if I have a full day of mini sessions, that's going to be all that I booked that week. If I'm booking regular sessions, I limit those to three a day. , , and these are just things I do to again, make sure that I am showing up as the best version of myself for my [00:09:00] clients, but also limiting the amount of time that I need to recover afterwards, because those recovery days are days that I'm not getting anything done in my business and your girl's got some bills to pay, right?

I am so excited to tell you that I just launched a brand new quiz called Let's Talk About It. What your taco preferences reveal about your wedding photography business. When I was growing up, I loved nothing more than taking quizzes in the back of teen magazines. If any of you listening were born in the 90s, you know exactly what I'm talking about.

They were in the back of teen magazines. They were in the back of Cosmo magazines. And now if I'm being totally honest, at 36 years old. When I see a quiz pop up on my buzzfeed, there is no better way to waste a few minutes of my day than to take that quiz. I just love them. So if you are like me and you love taking quizzes or you're just interested to find out what your taco preferences reveal about your wedding photography business and what the hell the two of them have anything to do with each other at all, I want you to head over to [00:10:00] my website, simply Sandra Yvonne dot C a forward slash quiz and you can find out.

And then don't forget to pop over to my Instagram at SimplySandraYvonne and let me know what your results are. As I was putting these episodes together, I really was stopping to think about how and if things have improved since I recorded part one of my story. Which would have been back in 2022. And there are definitely some things that have gotten better.

But I don't know if it's necessarily that the symptoms have gotten better, or if it's just that I've become a lot better equipped to handle them. In spring of 2023, I did decide to, , talk to my doctor about getting back onto an SSRI medication to help me with anxiety and depression, so that has been a huge game changer.

Ehh? But in terms of the pain I get through my cycle, and symptoms like chronic nausea, my chronic [00:11:00] migraines, overall just general body pain, I really don't think that it's actually gotten better. I do think that I'm just mentally in a better place to handle it all. There are still days that I I have a hard time walking up my stairs.

There's days that I have my husband pick up a smoothie for me on his way home from work so that I can at least have something to eat that day, but I'm at this place where I'm not as scared. There's not as many unknowns as there was for me back in 2020 because when I had my first surgery and I was given strong Hope and believe that this was going to put me into remission for at least five years I didn't get any remission And so as the pandemic started and I had no access to speak to my doctors I was just left wondering what was happening with my body I didn't know why I was feeling certain ways.

I didn't know [00:12:00] what to expect from the recovery of the surgery. I was left with a lot of unknowns. I had six weeks between when the surgery happened and when I saw my surgeon for a follow up, where I had no idea what they had done to me during surgery. The doctor had come to talk to me and my husband, but I still hadn't fully woken up from being put under for surgery.

And my husband, understandably, being there by himself with his wife going in for surgery, his anxiety was at an all time high, and he didn't remember a whole lot of what the doctor came in and said. After my surgery was over. I don't blame him for that at all. We have already said that for my next surgery, we're going to make sure he's recording all of the information that they give.

, so hopefully that doesn't happen again, where I'm just left wondering what happened, why I'm feeling certain ways, all of those unknowns. contributed to so much anxiety for me and that I really believe hindered my healing process after the surgery was over. So over the last few [00:13:00] years, I've had the opportunity to learn a lot more about endometriosis.

I've had a lot of opportunity to learn more about my hormones and I pay really close attention to how things like food and stress different, temperatures outside, different clothing that I'm wearing. I really pay close attention to how all of these things are impacting my body so that I can do what I can to alleviate symptoms, alleviate that stress on my own.

And it's given me a lot of confidence back in combination with maintaining my schedule so that I can get some control over this otherwise completely unpredictable disease. I wanted to wrap this episode up with sharing just a few things that you can do for somebody in your life that has endometriosis or who even suspects that they might have it.

I want to say that self diagnosis is completely valid. There is so much disinformation out there about endometriosis. There is a significant lack of education when it comes to our medical professionals where [00:14:00] most who are studying general medicine only talk about endometriosis for about an hour. hour out of their entire medical study career, an hour.

Because of that, so many medical professionals are not skilled to be able to diagnose endometriosis. My own doctor at 29 years old told me I was too old to have endometriosis, and I had to see several more doctors after that to finally get a diagnosis. So if that's something that you're dealing with and you are convinced that you have endometriosis, I want you to know that self diagnosis is completely valid.

And so if you are looking to support these people in your life better, the first thing that you can do is be as understanding as possible. Know that if they're talking about being in pain, it's probably because their pain is at a level that they can't handle. There's a good chance that they're in pain every single day and that they just don't talk about it unless it's something that is serious.

Just pushing them outside their limits. [00:15:00] There's a good chance they might have to cancel plans at the last minute that they're going to try and participate, but their energy is not going to be completely there. Just be understanding with them because they are dealing with a lot that they're probably not telling you about.

And never, ever, ever make their illness feel like a burden. Along with being understanding, I think that it's really important to remember that when you are supporting someone with endometriosis, or any sort of chronic illness, or disability, or anything like that, is to not take that person's autonomy away from them.

What I mean by that is that you may know that this person needs your assistance. It could be your partner, it could be a sister, it could be a friend, anybody. You may see them struggling. You may know that they need help. And it is hard for us as humans to watch our loved ones struggle. But one thing that my husband and I went through a lot when I was going through that period of time in 2020 when I was really, really sick.[00:16:00]

Was that he wanted to jump in and help and do all the things because that was how he was able to feel helpful. He felt completely useless when it came to my disease and not being able to do anything to help me in that aspect. And so to combat that, to help him deal with his emotions, he started doing anything and everything he could for me without me being there.

without me asking him to. And I know that sounds so sweet. I absolutely love him for it, but it got to a point where he was taking away my adult decision to be able to do something on my own. And when you are fighting for control of your body and you are going through so much in that aspect, to have other people start to make you feel like you're not capable of doing things is Really, really difficult to deal with and so it's important to remember that our loved ones that are going through this, [00:17:00] even though they have this disease and they may be struggling, they still have the right to decide if they are going to struggle through that or not.

Sometimes we need to struggle. Sometimes we need to feel like we can still do things. And if we really need the help, we're going to ask you for it. You have to allow that conversation to happen. There are definitely still things that I need help with, and there are still things that I am stubborn about that I probably should ask for help with sooner.

And I know it's really hard for my husband to sit back and watch me struggle, but, uh, As a grown woman who is capable of making her own decisions, it's up to me to decide when I need help. And then the last thing that you can do to support somebody in your life with endometriosis is to really just learn more about the disease.

One of the hardest things that I had to go through after I got my official diagnosis, again going back to that time in 2020, One of the hardest things to deal with, I had a lot of people who would say things like, Oh, I know somebody with [00:18:00] endometriosis, it's just a bad period, or don't worry, all you need to do is get pregnant, it's no big deal, I had no problems after that.

And all of those comments are so diminishing and so demeaning. And also so not true. Everybody has such a different experience with endometriosis. There is a world of symptoms that not every person experiences. And so to dismiss it as a bad period or say that your experience was no big deal is so dismissive of the person that you're speaking to and what their experience is.

And so when you learn more about the disease, it stops you from asking questions that could unintentionally be hurtful or dismissive to the person that you are asking them to, or making comments like I experienced. And it also just becomes really hard to talk about over and over and over again, especially when you're going through the thick of it yourself.

So I hope that those three tips are going to help [00:19:00] you support somebody in your life with endometriosis because I can almost guarantee you probably know somebody who has it. The statistics are at least 1 in 10 women have been diagnosed with endometriosis, unknown number of women have been undiagnosed with endometriosis, and trans, and trans and non binary people are completely underrepresented in these studies.

So if 1 in 10 women has been diagnosed with endometriosis, that really paints a picture of how many people have not been So yeah, there's a very, very good chance that you know somebody who has endometriosis. Now, as for me, I'm about to go head to the couch to snuggle back up with my heating pad and going to edit this episode and get it launched for you later today.

And then I'm going to enjoy the rest of my quiet week. Enjoy is definitely the wrong word there because it is day one of my cycle today So the next [00:20:00] few days are going to be long and tiring but by this time next week I will be back on the other side of things Hopefully feeling a little bit better and getting ready for one last endo related episode for endometriosis awareness month where I'm going to be sharing my endometriosis toolkit.

These are all the things that I have that I use when I'm on the go or at home to help me feel a little bit more comfortable. Whether you have endometriosis or not, I know that there are going to be some takeaways in this episode that you can apply to your own life. So if you are looking to just make your life a little bit more comfortable, endometriosis, chronic illness or not, Make sure you tune back in anyways, friends.

Happy Wednesday. Enjoy the rest of your week, and we will talk again soon. Thank you so much for listening. You can find full show notes from today's episode at simplysandreevon. ca forward slash keeping it candid. In the meantime, let's connect. You can find me on Instagram and TikTok, just search simplysandreevon.

And if you're [00:21:00] loving this podcast, I'd be so honored if you'd go ahead and hit that subscribe button and leave a review. Until next time, take care.