It’s time for my next Feature of the Month! It’s been a long time coming, but I truly believe this feature is happening at the most perfect time (you’ll see why later). As you know, I love to lift up other endo advocates and educators who are really making a difference in our community. I believe that we can only see improvement when we work together to combat the misinformation and gaslighting that our community faces.
All this to say, Rosemarie is exactly what this community has been waiting for! She is an endometriosis patient, a warrior, a survivor, a thriver, an advocate, and a coach. She has had THIRTEEN surgeries for endo, and is now the founder and creator of Endo Will Not Win. She is such a light in our community and proves to so many of us that you can thrive with endometriosis. So, without further ado, let’s get into this inspiring feature!
Tell us your name, where you are from, and what inspired you to start your Endo Will Not Win?
My name is Rosemarie Philip. I have lived in Houston TX for 19 years. I am a transplant from New England by way of Portland, Oregon! Over the years, I became more vocal about my illness. Each time I posted a picture on social media representing something a doctor told me I might never be able to do because of endometriosis – I would add #EndoWillNotWin. Almost like an accountability for myself.
I was facing my 12th surgery where I chose to have a hysterectomy and oophorectomy due to “potential” adenomyosis and PCOS. I had extremely aggressive cysts – progesterone shots were no longer effective, solidifying under my skin. It was an extremely difficult decision. I was heartbroken, and felt like I was giving up. One of my brothers sent a care package pre-surgery with a running tank he had made – on the front was “one tough chick” and on the back was #ENDOWILLNOTWIN. That is when I truly knew the power of the statement I’d been using all along. I purchased the website domain for Endo Will Not Win from my ICU bed, after nearly losing my life during that surgery recovery three years ago.
After such a close call I knew I wanted to do something for other endo warriors. There were so many needs for our community, it was tough to decide which to address. It wasn’t until I was in recovery from my 13th surgery this past year that my purpose for #endowillnotwin became crystal clear. Why not take my lived experience, and integrate it with my gifts, my profession?
What is your mission with Endo Will Not Win?
The mission of #EndoWillNotWin is to provide a safe space for endo warriors to heal their relationship with their bodies, self, and with others. Endo is a whole body disease and there is no cure. Our battle is so tightly wrapped up in shame, and in being shamed, that it is very easy to wage war on ourselves instead of the disease. Our disease is for life, so the more we can nurture our inner strength and build a community of support around us, the better we can manage the overwhelm and advocate for ourselves as patients, and someday other warriors.
Your perspective to life with endo inspires me, where do you get your inspiration from?
Oh my gosh thank you, you are so kind! My inspiration comes from a several sources.
- Some of it is this innate grit mixed with optimism. Since I was young I loved the quote “Loving the simple things in life will give you a world of joy.” Living with endometriosis only further cemented this belief.
- I watched family members suffer severely at the hands of this disease, and I vowed I would fight with everything I’ve got (which had its detriments).
- I re-read Man’s Search for Meaning by Viktor Frankl and Daring Greatly by Brene Brown every year. In order for me to be of service to my clients, I have to do the work too! I have to unpack my own shame, my own beliefs, my own insecurities – and I do so with people I trust and with professional coaches.
- I listen to other warriors. What are their needs, desires, experiences, resources. We have so much to learn from each other.
What diet were you eating before becoming a soy-free vegan and how did it make you feel physically? How has the change effected your symptoms?
What diet have I NOT been on?! Hahaha!!! Goodness I have tried probiotics, supplements, minerals, diets, the works. I had several feet of intestines (both upper and lower) removed due to endo. Ever since that surgery (#5) food would just go right through me. I’d eat, give it 10 minutes and have to run to the restroom. I finally found an amazing probiotic combined with prescription meds that helped and a strict diet. But then it would change nearly every time I had another surgery, I’d have different trigger foods and have to re-balance medications.
By this time last year I was eating chicken or fish maybe twice a week, eggs nearly every day, tons of veggies, some gluten, no dairy or soy. Endo belly was present, but instead of 8 months pregnant I looked maybe 3-4 months pregnant during a flare. My endo pain was back with a vengeance; I was scheduled for surgery with Dr. Sinervo at the Center for Endometriosis Care. I own my own business and had to stop working altogether. I was taking two naps a day from pain fatigue. I tried soy free vegan and no longer needed naps. Post surgery I usually lose 15-20 pounds, this time I lost one pound and have maintained a steady weight since. I have used over the counter medicine once in the past year, and only take a probiotic and some supplements. I finally found a diet my body loves! I also recognize that it may change again; I just have to stay in tune with what my body tells me it needs.
Outside of conventional/western medicine, what have you found to be the most effective tool(s) in decreasing your endometriosis pain?
After my 4th surgery I stopped taking all pain medicine except for one week post, because it just never alleviated that sharp stabbing, broken glass etching your insides kind of pain. I still to this day do a lot of epsom salt baths. Heating pad is a must. Acupuncture has helped at times. No lie, a punching bag – even at my weakest somehow distracted me enough. Honestly though, nothing could really touch my pain so I dug into the mental aspect. I had an #fEndo playlist on Spotify as well as a soothing playlist that I saved for the really awful laying on the bathroom floor moments. I also chose some mantras that I truly believed (body you are enough, this too shall pass), and would repeat over and over again. There was something about the repetition of the words that helped me focus outside my body. I used a meditation app and saved segments that worked most often. I was also extremely fortunate to have two dear friends who are licenced massage therapists. Although I usually cringed at touch, somehow they were able to make my body feel safe and relax while also working through some scar tissue that sometimes was the cause of pain.
Can you describe how the endometriosis treatment you have received has changed your life?
The only real treatment available to us is excision surgery; everything else is management of symptoms. I had excision surgery with the amazing Dr. Sinervo in December of last year, and I can honestly say the only pain I experience is all from previous endo damage, scar tissue and surgeries. I have also lost feeling in my right arm from shoulder to elbow (and those muscles have atrophied) due to the thoracic portion of the last surgery (a common side effect). Actual endo pain, however, is non-existent so far, and I’m in my 9th month of recovery! He has truly given me my life back. It still brings me to tears to say it. I’ve not truly known what that feels like since I was 13 years old, and I am almost 37.
What is one piece of advice you would like to share to those who are about to have surgery?
Two things that are so important. 1) Believe your pain. All thirteen surgeries I had this fear “what if they don’t find anything” because of not being believed by so many. So just know, your pain is real. 2) Manage your expectations. Recovery from excision surgery is different for everyone and it takes TIME, especially if you have had multiple surgeries. Try not to compare to others’ experiences. Yes I feel good right now, but I do still have a ways to go in my recovery. I know it will be probably 2-3 years before I really hit my new normal because I’ve had 13 surgeries! You also have to remember that although excision removes disease, they are cutting into your body in order to do that, and the disease has usually caused some damage. So yes there will be aspects that may feel so much better, but there may be some things that never go away. Excision is amazing, it gives you more good days than you’d had before, and if done by a proficient excision specialist your chance of ever being back in the OR is significantly reduced. But there still is no cure. It’s a sobering thought, but it’s the truth so we must manage our expectations of what the results may be and give it time.
How do you start and end each day? Do you have a routine that helps you manage life with endo?
I start every single day with a body scan before I get out of bed to determine if I need to adjust my schedule, activities, even foods for the day. I also make my coffee in an old school french press because it forces me to really take a moment in the morning and enjoy. I like to end each day reading, and a couple days a week with an epsom salt bath. I have a no phone 30 minutes before bed rule as I want my mind clear of noise so I can rest. Lastly I name one thing I’m grateful for at the end of the day – no matter what.
What do you do to manage stress?
Running is so cathartic for me. I’ve also really grown to love yoga. I have to make it outside every single day – nature grounds me. I schedule mini breaks in my day that I try to whole sacred, sometimes unsuccessfully. Cooking a beautiful but simple meal helps me decompress when I have the energy. Meal prepping is a lifesaver – I have a couple meals ready in the freezer, fridge or pantry at all times that just need to be thrown on the stove. I also write, and sometimes sit a few minutes at the piano. Any way to release emotion healthily.
Is there something that you always advise against when it comes to Endo treatment options?
I cannot give medical advise as I am not a medical professional; I can only heed warning to heavily research Lupron / Orlissa from solid resources such as Nancy’s Nook or The Endo Girls Blog before making a decision. I, and many individuals I know, permanently suffer from its effects. Just a few injections and I ended up with a major reaction, which developed into secondary Raynaud’s. I can no longer withstand cool to cold temperatures which has dramatically changed my lifestyle as a traveler and hiker. It is excruciatingly painful, and turns my fingers and toes black.
Can you tell my readers about your Virtual Retreat coming up?
Absolutely! Thrive: How to Make Endo Suck A Little Less is meant to provide a mixture of self care (you’ll learn to body scan!), connection with other warriors, and tools to strengthen you to “thrive”, whatever that means to you. Each participant will also receive a one-on-one 50 minute coaching session post retreat to support next steps for the thrive they define. It’s just two hours each day September 19 and 20. You can register here: https://www.eventbrite.com/e/thrive-a-virtual-retreat-to-make-endo-suck-a-little-less-tickets-116920194449
Any last thoughts or advice for my readers?
There is a lot of misinformation out there about the disease and where to receive support. I have posted a series of videos, one in partnership with Kate from The Endo Girls Blog, to help identify safe resources and people. I cannot stress it enough to thoroughly check the credentials of those you are looking to for guidance. A certificate is not enough when it comes to something you are dealing with for the rest of your life – degrees, certifications, and credentials from reputable organizations – that is what you DESERVE. Always check if they have the credentials for what is encompassed in the program, and if they do not, that they are bringing in other professionals who do. I practice yoga, but I am not certified. Therefore, I have a well-esteemed instructor who will be teaching restful yoga in the virtual retreat. I enjoy cooking and sometimes share recipes, but I do not provide nutritional advice – I refer to professionals I know have the credentials. When we let ego get in our way, the patient / client ALWAYS suffers. Thank you for doing such a tremendous job making sure all of your resources are vetted and correct! I refer people to your site constantly!
Follow Rosemarie Philip on Social Media!!
Also check out her professional website, philipconsultingllc.com, which currently does not hold chronic illness information or posts as she is beginning the transition of her practice. However, it does give you a very good sense of who she is am, her education, and credentials.