Episode 83: Trauma and Physical Illness: Lessons Learned from Endometriosis, Post-Op
Episode 83: Trauma and Physical Illness: Lessons Learned from Endometriosis, Post-Op
In episode 73, Alyssa shared about her ongoing battle with endometriosis, a chronic and extremely painful disease. This week Alyssa is following up with a part 2 to episode 73, in which she shares about her recovery process from surgery in January. Alyssa opens up about the lessons endometriosis has taught her about her own PTSD recovery as well as the scary truth about why trauma treatment is crucial when it comes to overall health and wellness.
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Alyssa Scolari [00:23]:
Hey, everybody. Welcome back to another episode of the Light After Trauma podcast. I’m your host, Alyssa Scolari, back with an update on my surgery that I had January 27th.
Alyssa Scolari [00:36]:
So I was actually just looking back to see when I released my first episode where I was talking about my struggle with endometriosis, and it was December 14th, so I have not updated you all in over two months. My surgery was January 27th, and as I was listening back to the episode that I recorded on December, well that I recorded for everybody on December 14th, I was in such a dark, dark place, and obviously that is perfectly valid. I want to let you all know that I am not in such a dark place anymore. It has been a very long couple of months. Honestly, it’s been a long probably seven or eight months because I started to get sick probably around eight months or so ago. So it’s been a very long process, and the last few months, especially have been understandably extremely traumatic but I think I’m finally on the other side, which is so exciting.
Alyssa Scolari [01:52]:
I have learned so much about endometriosis these last couple months and really about myself and how related this is to, I think, trauma and my trauma recovery, and I’m really excited to share that with you all today. I learned even more about endometriosis in the last two months than I knew when I recorded that first episode for you all back in December so we’re just going to get into a little bit of it today. I’m really happy that I’m finally having the energy and feeling well enough, both emotionally and physically, to be able to talk about it.
Alyssa Scolari [02:30]:
So, as I said, I had my surgery January 27th. And for those of you who might be new to this episode, as I touched on, I have been really sick with severe, severe pain. Period pain that is… Really, period pain doesn’t even do it justice. I was throwing up, I was passing out, I was getting my period every two weeks. I was experiencing intense inflammation and bloating and chronic fatigue. I was tired all of the time but I couldn’t sleep because I was in so much pain. It truly was the worst pain I’ve ever felt before in my life, and I have broken bones, I, and this is a little bit of a trigger warning for anybody who’s squeamish, pause now or turn the volume down right now, but I know physical pain. I mean, I broke my wrist twice when I was eight years old. The second time I broke it, the bone literally came out of my skin. I have sliced half of my finger off in a mandolin slicer and just many other things. I know pain. And when I tell you that this was the absolute worst pain I have ever felt in my life I say that while also making sure you realize that I have an extremely high pain tolerance.
Alyssa Scolari [03:52]:
So the pain was only continuing to get worse and I think it took a very significant turn for the worse in October when I really started to have severe gastrointestinal issues, which also is a side effect or a symptom of endometriosis that nobody told me about, or I wasn’t informed of I should say, or maybe I didn’t quite come across in my research at that point. So I was going to GI doctors because I was nauseous all the time. I always felt like I was going to throw up. I couldn’t really keep anything in. It was a mess. I was a mess. I had gotten to a point where I was just juicing and just consuming juice, fruits, and vegetables and chicken broth to get any kind of nutrients in. And during that time, I was just continuing to become more inflamed and more inflamed. And when I would get bloated, I genuinely looked like I was seven to eight months pregnant. It was unlike anything I’ve ever seen.
Alyssa Scolari [04:59]:
So these are just a few symptoms of endometriosis. I talk more about them, so feel free to go back and listen to that episode. But as you know, I was in an extremely dark place then. I couldn’t work. I couldn’t eat. I had no energy to do anything. I turned 30 years old in January 6th, and it was truly the most depressing birthday of my life because I felt like I was 99 years old and all I could do was cry. I had to really stop working, and it was just very, very scary. It was all I could do even to just keep up with the clients I was seeing and be able to record this podcast, honestly.
Alyssa Scolari [05:42]:
Again, I had had this surgeon, I know I talked about this in my other episode, but just to recap, I had this surgeon who told me that basically if the endometriosis had spread to my other organs, which is very possible because this disease is essentially these black lesions that grow into your organs, they don’t just grow on top, they grow into your organs, and so it has to be scraped out of your organs. And I was told that if it had spread to my bladder or other parts of my body that I could potentially need another surgery, if not multiple other surgeries. And I was also told that if the endometriosis has caused a lot of scarring, which is also a big possibility, that I could potentially have fertility issues, which was extremely frightening to me because I think that one of the things I look forward to the most in life right now is being a mom. So it was extremely scary. A huge sense of foreboding was with us always.
Alyssa Scolari [06:54]:
And to make things even worse, after the holidays, there was a huge rise in the Omicron virus. So with so many people, everybody and their mother had COVID during the last few days of December and those first few weeks of January, and I had gotten wind that the hospital that I was supposed to have my surgery at actually canceled the first two weeks of surgeries in January and they were going to reassess after those two weeks in January and see if they needed to continue to cancel more surgeries. So I was panicking that my surgery was going to be canceled. I had met somebody who had endometriosis surgery and she was actually scheduled to have it in March of 2020, right when the pandemic really hit us and we went into lockdown, her surgery was canceled and she wasn’t able to have surgery until June of that year. And I understand it might seem like a couple of months, but when you are in this amount of pain every single day, I am telling you it is unbearable. I have no idea how she did it but God bless her. God bless her.
Alyssa Scolari [08:15]:
So thankfully that was not the case. My surgery went on as planned and I was really excited. By the time January 27th got here, I really didn’t have many fears, which is unnatural for me because I have horrible anxiety and I had to be on birth control, which made my anxiety so much worse. So I was actually just really excited for the surgery. Went in, of course it took forever, it’s an all day thing. We had to report to the hospital by 11:00 AM and we didn’t get out of there until I think 7:30 at night, and most of that was just prepping me for the surgery. You just sit in a bed with an IV in and then wait.
Alyssa Scolari [09:01]:
Now, thankfully I had the most incredible nurses and my IV team and the anesthesiologist. I met people there that felt like they were my soulmates. I honestly feel like I was destined to meet them. One of my nurses was actually, I discovered, one of my neighbors. So I really hope to see her. I mean, God bless nurses right now and how hard they have it. Nurses have every reason to be miserable and hate their job right now with the way they’re being treated. But I just had the most pleasant people, despite the fact that I’m sure they have all been so traumatized over the last several years, so I am really grateful for that. I honestly could not have asked for a better experience.
Alyssa Scolari [09:54]:
I went into the surgery blindly because… Well, I actually thought, and I had said this in my last episode that I did on my battle with endometriosis, I had said that the only way to diagnose endometriosis really is through an exploratory laparoscopic surgery. I have now realized that that’s actually not true. A lot of upcoming research and science is telling us that if we know what to look for we actually can spot endometriosis in a transvaginal ultrasound, which I think is really neat. I think a lot of this research is new and a lot of the science is very, very new, so that’s not how things work with the surgeon that I had but come to find out it is actually possible. So it pays to, if you are somebody who thinks you might be struggling with endometriosis, definitely pays to do your research and see if maybe you are able to go and see somebody who knows how to diagnose endometriosis through an ultrasound. I don’t think it’s a 100% guarantee. I mean, I really don’t know, honestly. I’m not an expertise in that area but I do know that it’s possible.
Alyssa Scolari [11:12]:
So with me, I had no clue what to expect going in. And there was huge possibility it could have spread all over, and I was actually expecting that because my symptoms only continued to get worse and worse and worse. I was really expecting for it to be horrible with the level of pain I was in.
Alyssa Scolari [11:33]:
My surgery was an hour and a half, I believe she operated on me for and I mean, I just remember everybody being so nice to me and telling me that they were going to take great care of me and then I woke up. I woke up yelling because I was in so much pain when I woke up. But as soon as I woke up, I wasn’t even able to open my eyes yet, I don’t know if you’ve ever been… If you’ve ever been under anesthesia you’ll understand this, but you become conscious before you can open your eyes. So I was conscious, I just couldn’t open my eyes, and I remember feeling so much pain so I was just moaning and they were giving me pain meds, but what I thought instantly when I came into consciousness is, “Oh my gosh, I feel better.” I was able to say that even just [inaudible 00:12:31] how much pain I was in from the four incisions that I had. I was like, “Oh wow. I already feel a difference.”
Alyssa Scolari [12:41]:
I think I woke up from surgery around 5:30 and I am telling you by 7;30, when I left that hospital, I was so overcome with happy tears. Man, I’m going to cry again. I was so overcome with happy tears. I nearly skipped out of there. I cannot tell you how different I felt. It felt like somebody took away whatever version that was of me and put the real me back together because I had finally felt like myself for the first time in I really don’t know how long. It was simply incredible.
Alyssa Scolari [13:22]:
Now of course, recovery has been tough. Really, really tough. I felt instantly better but I needed to recover. I needed to stay home. I needed to be slow. And being slow and intentional with my healing brought up so many emotions because it really was a invasion of my womb. She took six specimens out of me and, keep in mind, as I said earlier, this isn’t just something where you scrape it off the top. Endometriosis grows inside so you have to dig it out. It’s called excision surgery, so she had to dig in six different spots all over my organs.
Alyssa Scolari [14:13]:
Now, she took the pictures, which I think is really cool. She took pictures while she was doing surgery on me and she sent me home with those pictures, and I was also told that she might not even know if it’s endometriosis. I might not know until my post-op appointment two weeks after my surgery. So I was like, “Oh great. I have to have the surgery and then I have to wait two weeks for answers.” Luckily, she was able to tell me at the hospital that she was fairly certain that what she took from me was endometriosis, which was hugely relieving. And she sent me home with pictures and she said that the endometriosis had spread, so it did spread a little bit, however, she was able to remove it from all the parts of my body that she saw it in. That was really relieving because it was looking like I wasn’t going to need a second surgery.
Alyssa Scolari [15:12]:
So really the goal now that I went home, I went home feeling better already, I went home having answers. I was of course in a ton of pain from the surgery, but the goal was to just heal and recover. And that first week of being home was really a, I think, life-altering week for me because it made me realize so much.
Alyssa Scolari [15:39]:
I understand that I’ve talked on this podcast before about how emotional trauma can manifest and often does manifest physically, but I don’t think I realized how much of my trauma I was still storing in my womb. I’ve never, ever agreed so much with Bessel van der Kolk’s, The Body Keeps the Score. If you haven’t read his book and you’re interested in learning more about how trauma is stored in the body, I highly recommend it. I knew this of course, and I believed it, but I never fully comprehended it until my first week postop when I was crying every day and I couldn’t understand why but it was just this grief that was welling up in me. And I didn’t want to be alone, and I wasn’t alone. I mean, my husband was home. He was home, he was working from home, but I was even frustrated with him for working because I felt like I needed somebody to give me 110% of their attention.
Alyssa Scolari [16:51]:
When I first noticed I was feeling that way, I started to judge myself, “Alyssa, why are you being so needy? Grow up. You’re an adult. You have to take care of yourself.” But then I started to process that and I started to let go of all of those judgements and I started to really understand what was happening for me and I realized that I was grieving heavily. I was grieving the abuse I endured. I was grieving the things in my life that I missed out on as a result of the abuse. I was grieving the last several years and things that have happened with… Well, honestly, I’ll get more into it another time. But I know that I’ve mentioned that I had had a therapist who really did a lot of harm to me and I think that I was grieving that and it all just hit me. Everything that I was storing came to light and I was just feeling and feeling and feeling, so I laid in bed for a week.
Alyssa Scolari [18:10]:
Yeah, I was recovering from surgery but I was also extremely depressed. And I just let myself be depressed because I am such a chronic over-functioner. No matter how I feel, I still function at a 10 out of 10 even on my worst days. And that, my friends, is really unhealthy. So I let myself fall apart and I let myself not answer text messages and I let myself not look at my phone and I just let it wash over me. It was one of the hardest weeks of my life. I don’t know that anybody could really ever understand how hard it was.
Alyssa Scolari [19:00]:
Before I went into surgery, my friend, Jen, Jennifer Burns, who was on the show, she was on the podcast, we did an episode about healing crystals, she gave me this advice that when you go into surgery, “I want you to imagine them taking your abuse out, taking it all out,” and I did that. I imagined that. I brought my crystals into the hospital with me and was just holding them in my bed and was meditating and was imagining that when they were taking out this endometriosis, they were also taking out the abuse. And I think that the weight of that really hit me.
Alyssa Scolari [19:43]:
So I had a lot of time to process and a lot of time to think, and I know that in the very early episodes of this podcast I talked about childhood trauma and complex trauma, and how, if it goes untreated, it can lead to disease and it can lead to chronic illnesses and autoimmune issues. If you want to read more about that, please go to acestoohigh.com. It is really, really fascinating to learn about the long term effects that trauma can have. And I thought to myself, “I don’t understand, I’ve been in treatment, I’ve been working on this. Why is this happening?” And it all clicked for me that while I have been able to intellectually talk about what I’ve been through, with everything going on, with having a very upsetting and traumatic experience with a therapist, and with moving and starting my business and my podcast, I really haven’t had a whole lot of time to feel. I know what I’ve been through, I’m aware of it and I can talk about it, but I don’t really feel it when I do talk about it. I’ve managed to dissociate a little bit, I’ve disconnected and I stored all of those feelings. So I understood why I got so sick this past year. I really understood it. It clicked for me.
Alyssa Scolari [21:29]:
Now, I’m going to say this, I’m no doctor, I’m no specialist in autoimmune diseases or endometriosis, but here’s what I know, I know that endometriosis is being considered for autoimmune, an autoimmune disease, in the autoimmune spectrum, and what we do know… I had said in my other episode that I did that endometriosis is caused by an estrogen dominance and I’ve learned that that might be true, but not necessarily. At the end of the day, we really don’t know what causes endometriosis. One in 10 people with female reproductive organs suffer from endometriosis, and that’s probably an understatement because women are so gas lit and told that their pain isn’t real so it’s probably much more than that because it takes a person an average of seven years to even be diagnosed. Thank God I am stubborn and don’t take no for an answer when it comes to my health and my goals and my dreams and I just kept going to doctor, after doctor, after doctor until somebody would listen to me, but not everybody can do that, unfortunately. So I would say it’s even more than that.
Alyssa Scolari [22:57]:
So I would say a significant portion of women can suffer from this disease and we still don’t know what causes it. There’s still so much that is unknown. And over the last several months, I’ve taken a really big, deep dive into… I’ve always been interested in Eastern medicine and Eastern ways of healing, but I’ve taken a really deep dive into Chinese medicine, and I’ve learned a lot from Lily Choi. You could follow her on Instagram. I believe her handle is lilychoinaturalhealing. I highly recommend you give her a follow, she’s incredible. And I have been taking some Chinese medicine and I’ve been really thinking about what could have caused this disease for me.
Alyssa Scolari [23:48]:
Now, again, there isn’t a ton of research on the direct link between trauma and endometriosis, but that’s because we really have neglected as a society how trauma can affect women long term, especially sexual trauma. It cannot be a coincidence. I can’t believe that it can be a coincidence that I, with my history of abuse, just happened to have a disease in the same area that has held my abuse for 30 years or less than 30 years, whatever it may be. That can’t be a coincidence. That doesn’t strike me as a coincidence.
Alyssa Scolari [24:38]:
So while there isn’t a ton of research out there and I am no doctor, for me, it makes so much sense that I have been holding onto my abuse and it has been really eating away at me and festering, stored in my womb. I think this is also why I have so many hip problems and lower back problems because of everything I’ve been holding. And this might seem like, “Well, yeah, duh,” but honestly, for me, it’s been a huge revelation. Despite the fact that I may talk about this on my podcast, it’s a little bit different to experience this in my personal life.
Alyssa Scolari [25:20]:
I really do think that all of the chronic stress has caused me to be living in a chronic and constant state of fight or flight, which means that the cortisol levels in my body, and cortisol is the primary stress hormone in our bodies, the cortisol levels in my body have been heightened for years. I know this because I’ve had blood work that showed my cortisol levels are extremely high, much higher than what they should be. So for years, I have had heightened cortisol levels and what that can do is it can throw off the balance of all of your other hormones, which could potentially have led to an estrogen dominance, which could have potentially led to the growth of this endometriosis.
Alyssa Scolari [26:11]:
Again, I’m not a doctor. I really don’t know the case for anybody else. I only know me and I know that the limited research that we have out there clearly shows that the amount of people with trauma are… First of all, there are so many people out there with trauma that it goes untreated for and people who might be able to talk about it but don’t truly work through the feelings, and the research tells us that those people are more likely to develop diseases and chronic illnesses, heart disease, lung cancer, things like that. We are more likely. Now, again, correlation does not equal causation. So just because you’re more likely doesn’t mean it’s going to happen to you. But I really feel like this highlights the importance of keeping your stress hormones down.
Alyssa Scolari [27:05]:
So what does that mean for me? Well, over the last several weeks, I have been working to change my life in ways so that my nervous system can take some time to relax. I’ve been using Chinese medicine that is supposed to help balance out your hormones. I have been setting firmer boundaries. I have been looking at the medications that I am on and looking at all of the side effects. I am taking an acid reflux pill that I didn’t even know can cause vitamin B12 deficiencies. Deficiencies in vitamin B12 can lead to mental health difficulties, also GI issues. I had no idea. Nobody ever told me. So what am I doing? Well now I’m taking a B12 supplement.
Alyssa Scolari [27:58]:
So I have really been doing a deep dive into what am I putting in my body, and that is not in an eating disorder way, but how can I achieve the most balance in my body, the most balance possible, and how can I work to regulate my nervous system? So I am saying no to things that stress me out. I am saying yes to slowness. I am working hard through the guilt that comes up when I notice that I might not be as productive as I’d like to be. I am really listening to my body.
Alyssa Scolari [28:42]:
Some might say I’m overanalyzing, but I don’t think I am because I have just spent so much time not listening to what my body needs and now I’m really ready to listen because I really get it. It was like my body had to be like, “Hey, if you don’t start taking care of me this is what the rest of your life is going to look like.” And I don’t want that. I don’t want that. I want more than anything to be happy and healthy and carefree. So that’s what I’ve been striving towards.
Alyssa Scolari [29:17]:
And I have been very firm with doctors. Whenever I have a doctor’s appointment, I reach out beforehand, I let them know that I have a history of trauma and that my husband is coming in to support me so that doctors can’t say, “Well, you can’t bring someone in because of COVID.” I am not meeting with people who stress me out. I am just doing what I need to do for myself and feeling much less apologetic about it than I ever would’ve felt in the past.
Alyssa Scolari [29:48]:
So if you are somebody who can relate to this, this is your call to action. Take time to think about what you need to start making your nervous system even just a little bit calmer. You don’t have to change everything right now. Rome wasn’t built in a day. But make those steps. For me, journaling, like writing it out has really, really helped me, so I encourage you to do that too. Do what is best for you.
Alyssa Scolari [30:22]:
Now, of course, with endometriosis there’s always a possibility that it can grow back. Always a possibility. That possibility is less likely when you have surgery with an endometriosis specialist, which I did. But because we don’t know enough about, it can grow back. So knowing what I know about myself and my body and having this belief about why I developed this disease in the first place, I am making every effort to live more freely and easily so that I do not have this disease return. I don’t know what the future’s going to look like, maybe I’m completely out of my mind wrong about all of this and maybe it’s going to come back regardless. But the fact of the matter is there’s really nothing I can do because despite what many doctors might believe, the fact of the matter is birth control actually doesn’t keep endometriosis away. All it does is mask the pain. So I can really just do what I can do, which is keeping my body as healthy and as stress-free as possible in the hopes that that is going to keep chronic illness away from me because I am 30. I have a long life left to live and I want it to be the best possible life that I can have, and I want that for you all too.
Alyssa Scolari [31:58]:
So please take extra good care of yourselves. Make the changes in your life that you need to make, whether it’s setting boundaries with people who are causing you stress, working less. Remember that you are more important than money. Now, of course, that’s easier said than done if you are struggling and living paycheck to paycheck, so please keep that in mind. But please remember that there is only one of you and we only get one go around in this life and we got to make it count.
Alyssa Scolari [32:31]:
So I love you all. I am holding you in the light. Thank you so much for your support throughout this entire process. I am continuing to heal. I will still be here because this podcast makes me so happy and you all make me so happy. And I think the year 2022 is going to be a really good one.
Alyssa Scolari [32:55]:
If you have any questions or any issues, again, please remember none of this was medical advice. I am certainly no doctor. But any questions, please feel free to reach out to me. If you haven’t done so already, please follow us on Instagram, @lightaftertrauma. And if you haven’t left a review for the podcast, please do so.
Alyssa Scolari [33:17]:
Also, if you are a patron, if you are a member on Patreon, please note that you can feel free to send specific episode requests. So if there’s a certain topic that you would like, and you want me to talk about, please feel free to become a patron and you can send me a message on Patreon and I will do an episode about that.
Alyssa Scolari [33:42]:
Thank you all very much. Have a wonderful day and I will be back next week. Thanks for listening everyone. For more information, please head over to lightaftertrauma.com or you can also follow us on social media. On Instagram, we are @lightaftertrauma and on Twitter it is @lightafterpod. Lastly, please head over to patreon.com/lightaftertrauma to support our show. We are asking for $5 a month, which is the equivalent to a cup of coffee at Starbucks. So please head on over again, that’s patreon.com/lightaftertrauma. Thank you and we appreciate your support.