It’s that time again ya’ll! Time to introduce my pick for the August Feature of the Month! But before I introduce the Endo Girls Blog, I want to reiterate why I chose to start this series in the first place.
As you know, endometriosis is multifaceted and very unique in the way it affects each person. Because of this, I know that my knowledge of endometriosis is limited to my personal experience and what I research along the way (I didn’t learn about endometriosis in nursing school- shocking, right?).
My overall goal with this blog is to provide you with an increased quality of life, which I believe can be achieved through awareness, education, empowerment, and support. I know my limitations and I know that I cannot do it alone. So, I have started this series to highlight other endometriosis warriors, advocates, and educators who exhibited an immense amount of leadership in the endo community.
My hope is that this series of interviews will provide you with new resources as you go through life with endometriosis.
So without further ado, I’d like to introduce you to the ladies behind the Endo Girls Blog, Kate and Laura. Get ready! This one has a lot of great information and INSPIRATION!
What is your name and what inspired you to start your endometriosis platform?
My name is Kate! I had successful excision of endometriosis and hysterectomy for adenomyosis with Dr. Sinervo at the Center for Endometriosis Care on July 3, 2017. I had to have my right ovary removed along with my cervix on January 15, 2018. I became much more outspoken about my journey during my very long recovery which lead multiple women to message me about getting help. Through a mutual friend, I was connected with Laura in 2018. Laura was about to undergo her excision surgery at the Center for Endometriosis Care as well, so I did my best to guide her through the process. That same summer, I was connected with another woman who had been battling endometriosis for years and referred her to the Center for Endometriosis Care as well. I spent hours guiding and chatting with these ladies to help them feel empowered and educated about the disease and the proper treatment. I began pelvic floor physical therapy in the fall of 2018. During these sessions my therapist and I would thoroughly discuss endometriosis and she suggested I start blogging about my experience. I shared this with Laura who also wanted to begin blogging about her journey. We attended the Endometriosis Summit in March of 2019 where we finally met for the first time! We are now working toward being board certified patient advocates as we continue to connect with surgeons, educators, and advocates to assist endometriosis patients in getting the best care that they can.
[My name is] Laura Kebert. After I came to terms with my diagnosis, my prayer became that I would find a purpose in my pain. It became my goal to help as many people living with this disease as possible. Kate is the one who really got things moving for me though, she was here for me since the beginning of my endo journey and coached me through surgery/recovery. One day she mentioned wanting to start a blog and I told her that was something I was interested in doing also. Shortly after, Endo Girls Blog was created (all thanks to Kate’s promptness and hard work).
What is the name of your blog/business/organization and what is your mission?
Our blog is Endo Girls Blog. Our mission is to guide and educate others throughout their endo journey all while empowering and inspiring our fellow endo warriors to become their own advocate and except nothing less than they deserve.
Laura and I started as Endo Girls Blog, the first domain I purchased. We also have finalized our LLC, EndoSolutions LLC, to have a legitimate name behind any and all advocacy we do. It is incredibly important that we make it clear that this is in no way a for-profit business. The LLC allows us tax benefits and write offs for purchasing tampons, pads, etc that we donate, as well as legal protection if needed in the future. Also, as an LLC, we can potentially form business partnerships with companies that want to join in on advocacy. Our ultimate goal is to make a scholarship fund for those who cannot afford expert excision surgery.
Outside of conventional/western medicine, what have you found to be the most effective tool in decreasing your endometriosis pain?
Chiropractic adjustments have always been very helpful in relieving my pain as well as Pelvic PT. I rely on those services to maintain the ability to function everyday, especially at my job.
Honestly, diet and exercise helped me manage my day to day endometriosis pain better than anything else. I quit eating red meat, pork, and poultry in 2012. This really eased up my gastrointestinal issues and inflammation. I would like to say I completely cut out dairy, especially since I am lactose intolerant, but I still consume it occasionally. The other huge diet change I made that helped was removing alcohol. I have not had a drink of alcohol since November 2014 and it really helped me survive the last few years leading up to my excision. I did multiple extremely strict diets and workout regiments at varying times, and I know for a fact that the leaner I was, the less I hurt. I understand that isn’t in the cards for everyone, that is just what helped me. I think [diets vary] so much from patient to patient that I wouldn’t say my way of eating is a for sure benefit to others, you know?
Name one supplement, herb, or vitamin that you believe can help endometriosis. Tell us how it has helped you.
CBD suppositories have been especially helpful for me on some of my worst pain days. The effects kick in pretty quick and help relax my pelvic muscles and calm the pain.
DIM-Plus! I didn’t take it the last two years before my surgery because I was the leanest I had ever been and my pain was less, but it was my lifesaver before then. I purchased it in bulk! The biochemist in me is going to be exposed here, but I think these details are incredibly important to know before taking any supplement. DIM completely changed my menstrual cycle and reduced inflammation associated with my endometriosis flares.
NOTE: The research provided below is in relation to cancer patients, but the scientific concepts are applicable to endometriosis warriors too. Breast cancer and endometriosis have many parallels when it comes to how our bodies are affected by estrogen.
“Inhibition of estrogen-dependent cell proliferation
In estrogen-sensitive human breast cancer cells challenged with 17β-estradiol, I3C has been found to inhibit the transcription of estrogen-responsive genes without binding to either ERβ or ERα (47, 48). In fact, the binding of I3C to AhR was shown to trigger the proteasome-dependent degradation of ERα (49). I3C-induced loss of ERα resulted in the downregulation of ERα-responsive gene products like the transcription factor GATA3. Since GATA3 regulates the transcription of the ERα coding gene ESR1, I3C prevented the synthesis of new ERα transcripts and proteins, eventually abolishing the ERα signaling pathway. The disruption of the GATA3/ERα cross-regulatory loop by I3C ultimately halted ERα-dependent cell proliferation (49). Acid condensation products of I3C that bind and activate AhR may also inhibit the transcription of estrogen-responsive genes by competing for co-activators or increasing ERα degradation (14, 50). I3C treatment also affected the expression of other ERα-responsive genes, including those coding for insulin-like growth factor-1 receptor (IGFR1) and insulin receptor substrate-1 (IRS-1), involved incell proliferation and deregulated in breast cancer (Figure 5) (51)” (Delage, Drake, Higdon, & Williams, 2017).
“3,3′-diindolylmethane (DIM), a derivative of the dietary phytochemical complex, indole-3-carbinol (I3C), which is derived from cruciferous vegetables, are phytoestrogens known for reducing the risk of prostate and breast cancer [6,7]. 3,3′-diindolylmethane has been reported to influence the prevention of estrogen-dependent cancers similar to fulvestrant (ICI 182,780), an estrogen receptor (ER) antagonist [8]. Moreover, the in vitro effects of DIM were shown to inhibit epithelial-mesenchymal transition (EMT) and metastasis via the estrogen receptor (ER)-dependent pathway [9]. Previous studies have shown that anti-estrogenic effects of phytoestrogens are implicated in their chemoprevention activity against estrogen-dependent cancers via the ER-dependent pathway” (Choi et al., 2018).
“DIM, as a phytoestrogen, has an anti-estrogenic activity that is associated with its anti-metastatic potential to suppress E2 or CYP-induced metastasis of estrogen-dependent endometrial cancer. A previous study reported that dietary I3C, a precursor substance of DIM, prevents the development of estrogen-enhanced cancers as a negative regulator of estrogen [42]. As anti-estrogens, I3C and DIM are known to have anti-tumorigenic properties by targeting ER-alpha (ER-α), and DIM was more effective than I3C at depressing mRNA expression of ER-α in MCF-7 breast cancer cells [43]. Additionally, in a study using thyroid cancer model, DIM was found to inhibit E2-induced proliferation and clone formation of cancer cells in a similar fashion to ICI 182,780 and act as an anti-estrogen by possibly targeting E2-ER signaling pathways [44]. Although the more detailed mechanism for anti-estrogenic properties of DIM in connection with its anti-EMT and anti-metastatic potential in endometrial cancer was not identified in the present study, DIM was found to suppress endometrial cancer metastasis by abrocating the effects of E2 and CYP in a similar way to anti-estrogen” (Choi et al., 2018).
How do you start and end each day? Do you have a routine that helps you manage life with endo?
I wish I could say I begin my day with good stretching/yoga or even end that way, but honestly I’m terrible at doing things like that! I start my day so early in the morning I only have enough time to grab coffee on my way to work! But starting my day with a good coffee and a great podcast like In 16 Years of Endo, really helps start my day off in a positive way! I end my day warming up my rice packs and putting them on the places that hurt the most, I love it because it also keeps me warm and cozy!
Even though I don’t directly suffer from endometriosis pain these days, I do still have to manage the repercussions of the disease (tension, posture, nerve sensitivity, etc) as well as a painful left ovary and some pelvic floor dysfunction. I wake up every morning with enough time to sit outside (weather permitting) with my dog and drink my coffee. I drink my coffee black otherwise it really upsets my GI tract! I use this time to do an initial overview of what I will need to get done for the day and answer any missed messages I need to address immediately. Other than social media for work and endometriosis advocacy, I avoid all other social media sources or topics that could cause me to have unnecessary stress/anxiety, etc. I actually have an add-on to my browser that hides my Facebook newsfeed; it simply shows inspirational quotes where the feed would be, so I don’t even accidentally see something distracting. As for the rest of my day, it varies wildly due to my career. Sometimes I may have to fly out of town on a whim, sometimes I have to drive all day, and sometimes I work from home all day. I am able to live my life this way now and work a job I love because I did have successful excision of my endometriosis, which is one of the reasons I work so hard to help others get proper treatment. We all deserve to live a life outside of fear of endometriosis. My pains now are residual and manageable.
What do you do to manage stress?
Again, I’m not the best at this but my PT has coached me well in deep breathing, so if I start to feel overwhelmed I make myself stop for a moment and take a few deep breaths. I am also taking Naltrexone to help with chronic pain and it seems to help my stress levels as well.
I am a huge proponent of having a therapist!! I know that private therapy isn’t an option for everyone, but free support groups are usually readily available and just as valuable. Even if you can’t find one in person, there are many official online groups with daily or weekly meetings. I have been in therapy for five years, actively practicing cognitive behavioral therapy. I am always learning more about myself, how to navigate the inevitable changes that happen in life, and how to become the best version of myself. In addition to therapy, I have been in AA for going on five years as well. I attribute my ability to fight through the worst of my endometriosis pain and life stress to the support I received through AA. I was managing so much of my pain with alcohol.
Is there something that you always advise against when it comes to Endo treatment options?
GnRH agonists/antagonists (Lupron/Orilissa). There is no sound scientific evidence or research to support their use in endometriosis treatment. As many excision specialists have stated (ie Dr. Sinervo, Dr. Arrington, Dr. Redwine), regular OCPs are just as effective at assisting with period pain relief as Lupron/Orilissa. There are some individuals who have claimed to have pain relief with their use, but I would argue that if it is helping, the pain that it is reducing is not endometriosis specific, but rather ovarian or uterine (adenomyosis) related pain.
I try not to tell people what they should and should not do, in the end our treatment comes down to our personal preference and decision for what we think is best for us. My only advice is to do your research and make an informed decision rather than just jumping on the first treatment your physician offers. Also, remember there is no cure for endo so any medical treatment you chose as far as medication goes is only going to potentially treat your symptoms, it will not stop the disease from causing harm to your organs.
I believe in the power of nutrition and finding a diet that helps minimize symptoms. Do you have a favorite recipe that you would like to share?
I agree, diet and nutrition play a huge role in symptom management, cutting out gluten, dairy, and most sugars has made a big difference for me; although diet changes have never brought complete relief (I just don’t get pain after eating anymore). I don’t like to cook so I don’t really have any recipes, but I have found a few “endo friendly” brands! I love Forager yogurts, it comes in several different flavors! I like to mix in a gluten free granola and protein powder for added nutrition. I also like Birch Benders Paleo pancake mix; they have original, banana, and pumpkin. They are all delicious! Pancakes are one of my favorite foods so I was very happy when I found an endo friendly mix!
SO MANY. But – I think in the endo world we don’t get to treat ourselves enough, so my favorite is a recipe for vegan brownies!! I swear it is all in the olive oil used! I personally do use eggs, so not vegan, but the recipe easily allows for flax eggs to be used instead. I will bake these brownies for events and not tell anyone they are dairy free, so they don’t get in a weird mindset before eating them and I always get compliments!
Find the recipe HERE!
Any last thoughts or advice for my readers?
My last piece of advice is to hold onto who you were before you got sick. Chronic illness changes our lives so drastically, but it’s important to remind ourselves that our disease does not define us. You can still be everything you were before you got sick, you just have to keep your health at the forefront of your priorities. Continue to work if you want, but communicate with your employer/co-workers and let them know you’ll have to set some boundaries to be able to continue working. And don’t be afraid to take days off if you need them. Continue to do things with family and friends, but let them know what you can and cannot handle. Communication is key in so many aspects of life; it has been very important for me to communicate with my loved ones about this disease. Always remember you can still live a fulfilled and happy life with chronic illness!
I actually want to copy from a post I recently made on our Instagram about fighting for your health. It is really hard work, but I think it is absolutely crucial to be ready mentally for the fight ahead of getting proper endometriosis care. I truly believe anyone can have a happy, fulfilling life with endometriosis.
“SHOW UP FOR YOURSELF.
Endometriosis and Adenomyosis are daunting. Constantly being sick is daunting. Not being able to see the light at the end of the tunnel is DAUNTING. The medical bills. The depression. Fighting for your health is daunting.
Are you angry enough yet, though? Are you mad enough at your situation to do whatever it takes to make a change? No, there isn’t a cure. There isn’t a cure for a whole lot of medical or mental conditions. There is no cure for my bipolar. There is no cure for my alcoholism. But did I let those things dictate my life and prevent me from having a good life? No. I didn’t let my chronic illnesses do it either.
YOU HAVE TO DIG DEEPER THAN YOU EVER THOUGHT WAS POSSIBLE.
I crawled and scraped and FOUGHT for my health. I didn’t waste time dwelling in my mind. Did I have moments where I became overwhelmed? EVERY. SINGLE. DAY. The pain is real – so I had to face it straight on and say bring it on, pain. What will you do today, pain? Put me in the ER? Alright, fine. But I will WALK OUT OF THERE and fight until the next episode. I did that year after year until I had mustered enough courage and money to get the best care I could find. Car falling apart? Fine. Credit score ruined from medical bills? Bring it. I couldn’t even get a loan. Eating cans of tuna and cheerios because that’s what I could afford? FINE. I didn’t have the luxury to eat some perfect “endo diet.” And I sure as hell didn’t have the luxury to sit in self-pity. Because that was KILLING ME. My endometriosis was trying to kill me, but I was actively killing myself with my attitude if I didn’t fight my way out. ARE YOU ANGRY? GOOD. DO YOU NOT WANT TO FEEL GRATEFUL? GOOD. GET ANGRY AND FIGHT. DO YOU FEEL LIKE A VICTIM? GOOD! USE IT. All of that energy you are putting into those feelings, turn that into action. If you can figure out how to do that, you will become stronger than you ever thought was possible. I will believe in you. I will fight with you. I will help you. But you HAVE to try with me. Are you mad reading this? GOOD.” -Endo Girls Blog
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- Delage, B., Drake, V. J., Higdon, J., Williams, D. E. (2017). Indole-3-Carbinol. Linus Pauling Institute: Oregon State University. Retrieved from https://lpi.oregonstate.edu/mic/dietary-factors/phytochemicals/indole-3-carbinol
- Choi, K., Go, R., Hwang, K., Kim, B., Kim, J., & Kim, S. (2018). 3,3′-Diindolylmethane Suppressed Cyprodinil-Induced Epithelial-Mesenchymal Transition and Metastatic-Related Behaviors of Human Endometrial Ishikawa Cells via an Estrogen Receptor-Dependent Pathway. International Journal of Molecular Sciences, 19(1), 189. https://doi.org/10.3390/ijms19010189
