Ute Yeeted, Diagnosis Confirmed. 💪

If you’ve been seeing my social media posts (sorry not sorry for the TMI, but until endometriosis has a cure I’ll be talking more about it), you know that on May 22nd I had endo excision surgery and a hysterectomy that I’d been wanting for a long time. My journey is sadly typical, it’s quite common for an endometriosis diagnosis to take a decade or so to obtain. But I was thankfully in very good hands, surgery went well and all the endo that my surgeon found was excised. She diagnosed me at Stage 2, and most of it was in one area on my uterosacral ligament.

I was excited and well prepared for the surgery, but one of my biggest fears going into it was that they wouldn’t find endo, and that I’d be back to square one trying to figure out what my symptoms meant. So while having a chronic illness is not fun, I felt validated to see those results on the biopsy as well as grateful that it was only found in one area, since it can spread - creating its own blood supply and estrogen in its wake. I imagine my outcome could have been worse if I had more exposure to endocrine disruptors, a poorer diet or other health issues that often co-occur with endo and make symptoms worse.

Perhaps sharing my experience can help someone out there realize they may have endo – about one in eight or so women are thought to have it and it’s often undiagnosed or misdiagnosed for years. I definitely felt much more prepared and better able to advocate for myself once I learned as much as I could about endometriosis and related conditions. I listed links, resources, surgeons and bits of info that I learned in this Google Doc I made to keep track of it all, and I discussed my journey discovering my diagnosis in a previous newsletter.

Once I got the referral to an endometriosis excision specialist that I’d been needing and had to repeatedly insist on for several years, things started to move more quickly. I had an initial consultation by video call with the surgeon, and another the week before surgery to help me prepare, and in between I had a trans-vaginal ultrasound and a colonoscopy (wow, that prep is not fun), went in for some bloodwork and picked up the prescriptions I’d need to take once I got home from the procedure. Luckily the closest Kaiser specialist was in San Rafael, so we only had to travel about an hour away.

My surgery was minimally invasive since they were able to do it laparoscopically – making five tiny incisions across my lower belly with a robot and cutting out all endometriosis and removing my uterus, cervix and fallopian tubes. My ovaries looked good so I get to keep them, which keeps me from going into surgical menopause. I’m still not sure what to expect from menopause, which can usually slow endo growth but not always. It can grow back, but excision surgery with a specialist is the best treatment we currently have. And not having a uterus would mean no more periods, which were always when my symptoms were the worst. I am so excited to be free from menstrual tyranny!

Between my surgeon, Dr. Swain, my parents who helped cover the costs that my insurance didn’t, and my partners Josh and Wesley who took turns staying with me the first two weeks of my recovery, I have been in very good hands. Josh drove me home from the hospital and stayed with me to keep all my meds on schedule, and even had to help me get up from bed at first. Then he picked Wes up from the airport when he flew in from Baltimore for the second caregiving shift. While I couldn’t do any heavy lifting, my laundry got done, the kitties were cared for, and the house stayed well kept thanks to them. I even got to go out on a date with BOTH my boyfriends, which was so amazing and affirming. I am very grateful to have such an amazing support network, and I wish everyone could experience this quality of care.

I’m hoping this update helps anyone prepare for any upcoming surgery, or plan to support a loved one having surgery, since I’ll share my prep tips and what I’ve learned along the way. Community care is essential in supporting each other through health struggles, and I am SO beyond grateful to have an amazing support network. I wish everyone could access quality care that is affordable, but our healthcare system is broken AF, and women’s health in particular is horribly underfunded and understudied. I am absolutely privileged to have great outcomes and support, and I’m so grateful to have some resolution after years of struggling to get a diagnosis.

❓Get Curious: For the last couple years I’ve been doing a deep dive into endometriosis. Especially once I learned that it was found during both my mom’s and aunt’s hysterectomies in their late 30s. I joined several support groups and began following endo doctors and advocates on social media, I read books and studies, and I explored some lifestyle changes to shift to a more anti-inflammatory diet. Here’s some of the resources, supplements, and surgery recovery supplies that helped me along in my journey:

📚 Books: I’m a nerd, so if I really want to dive deep into something, I read well-researched books. Some of the most helpful ones I’ve found on understanding endo and deciding on a treatment path are: Heal Endo: An Anti-Inflammatory Approach to Healing from Endometriosis by Katie Edmonds, (F)NTP, and her accompanying cookbook, The 4-Week Endometriosis Diet Plan; Beating Endo: How to Reclaim Your Life from Endometriosis by Dr. Iris Kerin Orbuch, MD and Amy Stein, DPT; and The Empowered Hysterectomy by Kameelah Phillips, MD. These really helped me know what questions to ask and empowered me to make informed decisions about my treatment and ways to adapt my lifestyle to support my healing.

🤓 Be Well Prepared: A good surgeon will meet with you as much as you need to feel comfortable and prepared for whatever treatment plan you choose. As I read and researched, I started writing down questions to ask during video calls with the surgeon. She and her team also sent me detailed instructions through Kaiser’s messaging system for both preparation and recovery, which I printed out and sent to Josh and Wes ahead of time. Support groups were a great place to ask questions and see how others prepared for this procedure too.

🥦 Anti-Inflammatory Eating: Endo is an inflammatory disease and bloating is one of my most persistent symptoms, so I’ve been working on shifting my diet towards anti-inflammatory foods and cutting down on anything processed. I was vegetarian and mostly organic for over twenty years, so I think that a healthy diet has helped but I needed to step things up. I started tracking what I ate with an app, and working on reducing carbs and increasing protein. I wanted sustainable changes, not extreme elimination diets, and just paying more attention has helped regulate my digestion and helped me lose a few pounds. Some cookbooks that I found helpful: Your Body Isn’t Sabotaging You, You are Just Misfed; Endometriosis Plant Based Diet Cookbook; and the above mentioned 4-Week Endo Diet Plan.

🛌 Recovery Supplies: I found some great lists from fellow endo warriors and hyster sisters in Facebook groups and compiled a wishlist of my own. What I found most helpful was a little cart on wheels to keep next to the bed with all my meds, recovery instructions, and comfort items like chapstick, a BIG water bottle with a straw, my heating pad, high protein snacks, electrolytes, chargers and books. I used a lot of bandaids since I changed them daily for the first week or so on my five incisions, the abdominal binder that they sent me home with was handy, and I loved having several different pillows to help me sit up in bed and sleep comfortably, including a “starfish pillow” to wear over my tummy in the car. I had stocked the fridge well and had a bunch of easy to prep frozen meals and healthy snacks handy, and also did a deep clean of my apartment before surgery so all my guys had to do was upkeep.

💊 Supplements: From what I’ve read, many endo patients are deficient on some basic vitamins and minerals like Vitamin D, and Magnesium. I started adding some supplements that have shown promise for treating endo, balancing hormones, and helping to ease inflammation. I also got a blood panel done and worked with an integrative health practitioner to come up with a plan for supplements and diet changes. I highly recommend Dr. Natasha Khallouf at On Point Integrative in Sebastopol! Here’s what I’m currently taking: NAC, DIM, Vitamins D2 & K, Vitamin B Complex, Magnesium Glycinate, a multivitamin gummy, a PMS support gummy with dong quai and lemon balm, turmeric & ginger gummies, ashwaghanda, evening primrose oil, CoQ10, and a fish oil EPA supplement. I order some of these from Thorne and many of the gummies are from Costco. (my preferred way to take any vitamin is make it feel like candy).

💪 Training & Movement: It’s always been hard for me to stay active when I’m dealing with horrible cramps or fatigue, but moving my body consistently is the only way to feel better and maintain a healthy weight. I love yoga or fitness classes, but they can get expensive, but the Crunch gym down the street is cheap, so I try to go at least a couple times a week and do all the weight machines and some cardio like a stair stepper. Since my surgery, I’ve had to take it easier but movement is still part of the healing process. Daily walks have been keeping me from getting cabin fever while healing, but soon I can step it up a little more.

🥰 Community Care: Nurturing a support network, especially in-person, seems way harder than it used to be. But engaging in your community, even if it’s just dancing to local DJs and supporting your friends’ businesses, is so important. The system is not going to take care of us, but mutual aid will. My issue on lessons from the White Panthers has a few more community building ideas. I am convinced that the reason I was so well prepared for surgery and had a smooth recovery process is that I was well supported by my family, loved ones and community. So grateful, and I want that for everyone!

Speaking of community care, I could use your support! I need to get some new projects going now that I’m returning to work, so keep an eye out for Marketing leadership roles that sound like me, design or content creation projects, strategy work or social media management. I’d also love to book some 1-hour Strategy Sessions or Marketing Consulting Calls - $75 gets you a focused hour of my time and you can Schedule one HERE. And as always, reading, sharing, recommending and clicking on the ads below in this newsletter are super helpful, or you can always upgrade to support me even more.

THANK YOU! 💜, Pru

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