“Let’s get this uterus out of me.”

It’s been several months since my last blog post, so let’s do a quick recap of 2025 because let me tell ya, it was one hell of a year. My mom was diagnosed with breast cancer, and she had a lumpectomy and started/completed her radiation treatments after a visit to Alaska to see me. I met Zak and fell head over heels for him and continue to do so. One of my best friends from elementary school throughout high school passed away tragically in a car accident, and I was reminded just how quickly life on this Earth can be taken from us. My dad was diagnosed with stage 4 kidney cancer, which was shocking and pretty earth shattering for me, considering he has always been the one I would go to that can calm me down in any situation. He began medication and immunotherapy treatments, which he continues to do, and hopefully we will see a difference in his scans eventually. I got a big ol’ chunk of skin cancer removed from my back (thanks Florida; I blame all those weekends I spent at the beach or playing beach volleyball). I had my first ever mammogram. Turns out the women in my family, including myself, have very dense breast tissue, causing the need for more frequent breast cancer screenings, which I guess I should be grateful for in a way because that’s what caught my mom’s breast cancer so early. Because of my very elevated Tyrer-Kusick score (which is a comprehensive risk assessment tool used to estimate a woman’s likelihood of developing breast cancer within 10 years and over her lifetime) and my mom’s breast cancer history, it is now recommended for me to have alternating breast imaging every 6 months or so, whether it’s a mammogram, breast ultrasound, or breast MRI. My anxiety hit an all-time high, and I ended up having to switch anxiety medications after upping my previous one 2 times, and it still wasn’t working for me. My pelvic pain skyrocketed to the point that I decided to get a hysterectomy, but we will get more into that later on. Zak and I went to Florida to visit my parents towards the end of the year after we got my dad’s diagnosis, and we also got to see some of his family as well. I’m happy to say we also got to take Zak to Legoland or as he calls it: “the motherland,” which I think he thoroughly enjoyed, and I must say, the exhibits were pretty cool to see. Zak then moved to a remote Alaska town called Haines, due to accepting a position as their Fire Chief. I’m so proud and happy for him, and while I miss being close to him, I am very grateful to have someone in my life that I can miss and look forward to seeing so much.

The main purpose of this blog post is to get into the details of how I came to the decision of choosing to have a hysterectomy, and all of my thoughts and feelings regarding it. I’ll also get into how I’ve been physically feeling as well. I have mentioned in my previous blog posts how writing has always been a therapeutic act for me, and while getting all of this out is beneficial for me and my mental health, I think my favorite thing about doing this blog is the amount of people that reach out to me after reading it. If I can reach just one person who is struggling with chronic illness and help them not feel so alone, then it’s worth putting all of this out there. Every single time I’ve written and posted a blog post, an acquaintance or friend has contacted me saying they have experienced something similar, or they ask me questions because they know someone who is also struggling. One thing I have learned from having endo and adeno is that the endo warrior community is STRONG. The pain and experiences these women, including me, have had to deal with are things that I would wish upon no one, but I also have not known another community of individuals that are so resilient, empathetic, and determined. It’s truly inspiring, and while I wish I didn’t have to be a part of that community, God just had other plans for me, and some things are just not for us to understand.

If you haven’t read my previous posts and don’t know the difference between endometriosis and adenomyosis, I’ll do a brief explanation. Endometriosis is when endometrial-like tissue grows outside the uterus, while adenomyosis is when the tissue grows into the muscular wall of the uterus. Not only does endo cause severe pain, but it also causes adhesions and scarring within the body, which can then cause your organs to stick together in ways they shouldn’t. This is often referred to as having a “frozen pelvis.” Can you imagine how painful that is? I have both conditions. In my case, endo has been found behind my uterus, on my bladder, my appendix (which is now gone), both of my pelvic sidewalls, and my rectum. I have had 2 laparoscopic surgeries in which endo was removed, but I have never gotten much relief from either surgery. I have tried everything from acupuncture, red light therapy, castor oil packs, massage, cryotherapy, pelvic floor physical therapy, anti-inflammatory meds, Chinese herbal medicine, IUDs, GLP1s, changing my diet to be gluten free, and medications that put your body in an artificial menopausal state in order to try and keep estrogen from feeding your endo cells. Nothing has worked for me, and a lot of the medications come with their own side effects that you don’t want to deal with on top of having severe pelvic pain. Medications like Orilissa and Lupron (I’ve tried both) suppress the estrogen in your body, which can cause you to have menopausal symptoms like horrible hot flashes, headaches, mood changes, and not to mention, you can also only take them both for a certain amount of time (usually 1-2 years) because of the detrimental effects it can have on a woman’s bone density. So, these meds are really only a temporary fix anyways. Does it piss me off that there is no medication to properly treat endometriosis yet? Yes, it does. Do I think we would have had something by now if this was a disease that affected 1 in 10 men instead of 1 in 10 women? Yes, I sure do. In my experience, the only thing that ever helps me is heat, either a heating pad on my belly or a searing hot bath that takes the pain away for bit, which isn’t good for my POTS, but a girls gotta do what a girls gotta do. My TENS unit also helps sometimes; it’s nice to feel the vibrations on top of the pain, useful as more of a distraction if anything, but doesn’t get rid of the pain.

So, what do I typically feel on a daily basis? As I’ve said in previous blog posts, it just depends on the day, but the pain has been getting worse and worse lately. As Zak says, “it’s like my uterus knows I’ve decided to evict it, and it’s trying to get revenge.” The pelvic pain is there every single day; it can range from my stomach just feeling swollen and heavy, like there’s a bowling ball in there, or it can be sharp stabbing pains in my sides. Most of the time though, it’s a constant cramping pain that is just worse on some days than others. Some days it’s enough to make me double over and moan and groan, while other times it’s just a constant dull cramping. The pain is often exacerbated by standing or sitting up for a while. Some days the pain radiates or shoots down my legs to the point to where I can feel it in my toes. Some days it causes my joints and my entire body to feel inflamed, but part of that we can also blame on my Ehlers Danlos. When walking up my stairs, I feel tugging pains in my pelvis and hips as my legs move up and down. I once heard that a typical person would need to stay awake for 3 days in a row and try to function like normal in order to feel what a chronic illness person feels like every day, and I fully believe that. The strength it takes just for me to get out of bed sometimes is crazy, and then I am expected to function normally and do my job like everyone else. I am thankful that I have a job where I can work from home when I am feeling bad enough. I am also grateful to have found a realm of nursing where I can still help people, but I am not putting my body through 12 hour shifts or lifting patients and moving them into different positions anymore.

So, how did I come to the decision of wanting a hysterectomy? The short answer is that the pain has just become too much. It affects my daily life too much, and quite honestly, I can’t imagine continuing to live my life like this. It has taken too much away from me already, and I refuse to not do everything I can to overcome it. After not getting much relief from my laparoscopic surgeries, the provider I see for my endo in Anchorage thinks a lot of my pain might be caused from the adenomyosis, which can only be cured from having a hysterectomy. He also explained to me that the chance of recurrence of endo after having a hysterectomy and endo excision drops dramatically, but it’s obviously never a 0% chance. If my uterus is taken out, there is clearly a 0% chance that I will ever conceive a child, which I am okay with. I am content being a dog mom and an aunt to my nephews. Zak and I have obviously talked about this extensively as well. It was a pretty easy conversation because we are both on the same page, but my heart really goes out to the women who really want to conceive their own children one day. Or the women who are okay with not having children, but their partner really wants children. Fertility is such a delicate subject, and many women who struggle with their fertility feel less than if they are not able to get pregnant, especially if they feel that calling to become a mother one day and have a sense of purpose coming from their fertility. One thing my doctor said to me when discussing if I was absolutely sure about getting a hysterectomy or not was, “I want this to be 100% your decision. I don’t want you to feel pressure one way or another. But something I do want you to think about is if not having your uterus anymore will affect your womanhood and the way you feel about your body.” The fact that he even considered this, as a male provider, brought tears to my eyes.

The reason him saying that was so emotional for me was because over time and throughout my struggles with endo and adeno, I would be lying if I said that it didn’t cause me to lose faith in not only just male providers, but men in general. And when I really think about it, me losing faith in men started even before my health struggles. Could it have started when a religious leader at my church growing up began to send me sexually inappropriate texts? Maybe it was when I was home from college at a party in my hometown and 3 low-lives decided it would be funny to slip something in my drink. Or maybe it was when I was home from college for Thanksgiving one year, and I was out at the pub wearing an open-back shirt, and a male I didn’t know took it upon himself to reach in through the back of my shirt and grab my breast. Could it have been when I was casually dating someone in college that forced himself upon me, and then proceeded to tell me afterwards that he didn’t think we should see each other anymore because I didn’t have a church I was regularly going to yet? Maybe it was the first time I went to the ED for severe cramping and abdominal pain and was told by the male ED doctor that the pain was just from the anxiety of nursing school. Do you think that made me ever want to seek treatment again in the ED for my pain? Could my mistrust be exacerbated by the fact that we have a literal rapist and someone that so blatantly disrespects women as our president? Maybe it was from the cardiologist I see for my POTS telling me that women complain too much. These are experiences that women have REGULARLY, so the fact that I have found a local GYN provider that specializes in laparoscopic surgery for women with painful pelvic conditions who takes the time to really listen and empathetically respond to my concerns truly feels like a miracle to me. Having a male doctor like that is a wonderful and powerful thing when you have had so many past experiences that have caused distrust in men. I’d also like to give credit to Zak as well. Dating someone with chronic pain and illness is no easy task, and he took it on like it was no big deal. He has shown me that I am still so loveable despite everything, and while I already knew that deep down, sometimes it takes an amazing man like him to bring it back out of you.

I have gotten a mixture of reactions from people I know when telling them I am getting a hysterectomy. Some have looked at me with sadness, and I have to tell them to please not be sad, as I am looking forward to it and am hopeful it will help my pain. Some have responded with excitement for me because they know how long I’ve been in pain, and they are looking forward to me hopefully getting some relief. Some have responded with, “you’re too young to be having these issues!” Well let me tell you, endo doesn’t discriminate based on age. Endo has been found in a fetus as early as 25 weeks, so if someone tells you that you’re too young to have endo, that’s simply not the case. I’ve also gotten the reaction of, “wow, I didn’t know it was that bad for you. You hide it so well.” Trust me, it’s not that I’m hiding my pain. It’s just that my body has gotten used to being in this much pain for so long. Sometimes I think that people only believe you are in severe pain when they can actually see it for themselves. If you’re not crying out in pain, people assume you are fine. Little do they know, on the inside of your pelvis there is a constant gnawing pain that feels like your uterus is going to explode. Women with endo have been experiencing the pain for so long that they no longer are crying out in pain to where you are able to see it with your own eyes. Their body has gotten used to being in a constant state of “fight or flight.” This is also why women with endo struggle with anxiety and depression. Chronic pain and anxiety are literally linked through a vicious feedback loop where each condition physically and neurologically worsens the other. The relationship between the two are driven by shared brain pathways and biological stress responses. So, if you are reading this and wondering why you’ve been struggling so much with anxiety while also dealing with your chronic pain, no you’re not crazy. Women with endo and adeno also deal with a sort of “pain catastrophizing” where you are hypervigilant and aware of your body, constantly in fear of the pain coming back or getting worse and scanning for a flare-up to happen. Not to mention the pain causing a lack of sleep, which then in my experience, makes the pain and anxiety even worse. One of my least favorite reactions I’ve gotten is the, “Oh really? That seems extreme. Have you tried this?” Mhmm okay, hold it right there partner. Do you think I would be getting a hysterectomy if I hadn’t already tried everything available to me?  And even if I didn’t try everything under the sun, did I ask you for your advice?! No, I didn’t, so maybe just keep your thoughts to yourself if you weren’t asked about them.  

One of the last points I’d like to make in this blog post is to believe women. Believe them when they tell you about their pain. Believe their stories. Believe them if they are reporting sexual assault. Do not immediately go down the road of doubting them. It’s not fun to relive a bad experience or explain the pain over and over again. No woman likes that kind of attention. In this current political climate where women’s health funding is under attack and women’s rights are being scrutinized, be a kind neighbor. As I always say, you never know the battles someone is going through. Some are more public about their struggles than others. Kindness always wins.

As always, if you are someone that is struggling with chronic illness, chronic pain, or anxiety/depression, I am here for you. You are never alone, even when it truly feels like you are. I know the feeling. Chronic illness can be very isolating, but don’t let it isolate you to the point of not asking for help.

Oh, and if you are the praying type, please pray for a successful surgery and relief of some pain for me! I’d also really appreciate prayers and good vibes sent to my dad too.

Peace & love, Sarah