It took me 21 years to be diagnosed with endometriosis. 252 months of chronic pain, unbearable periods, migraines, incredibly violent reactions to certain inflammatory foods, at least four ER visits, an appendectomy during the first week of a new job, calling out of work during my SECOND week on the next job, devastating infertility challenges… all with no concrete answers, before I was diagnosed with stage 4 endometriosis. Once I was on a business trip in Santa Monica and was in so much pain in an external meeting that I took my phone and went to the bathroom so I could cry and throw up if I needed to. I ended up just walking downstairs and taking an Uber to an urgent care so I could get pain injections. Left my suitcase, laptop open, sunglasses, jacket, all on the table at the meeting and just never went back. My boss rolled my suitcase down to the pier after the meeting was over and sent me in a car to the airport, where I sat in the shower at a Sky Lounge until I could get on a plane and pass out. Mortifying. At the time of diagnosis it was so aggressive that it hurt to pee and another doctor was recommending rotator cuff surgery… but still, the only reason I was diagnosed is because our IVF doctor happened to see a large mass during an ultrasound. This mass eventually landed me in the ER and then in emergency surgery, because it’d ballooned into a blood-filled cyst holding over one LITRE of endometrial tissue. It’d created a barrier for the bladder and my kidney, limiting my ability to pee (no wonder it hurt!) and completely devastated my right ovary to point that there was nothing left but “shreds” when they got to it in surgery. Sadly, all of the above actually resulted in an enormous sense of relief since I finally knew what was wrong with me.
I’m not a particularly private person (obviously ha) but I never felt compelled to talk about my Endo because I didn’t know anyone else had it. It took so long for me to find out what was wrong with me that I suppose I just assumed it was rare and that my circumstances were unique. It’s also a bit awkward to talk about since you have to mention words like “uterus” and “endometrial lining”… it’d be much easier to share if it wasn’t a disease impacting female reproductive organs! That said, slowly but surely, especially after talking through my entire medical history with the therapist I worked with to treat my post-partum anxiety, I started to realize that 1) this entire ordeal has been relatively traumatic and 2) for every person I shared my story with, they knew at least one other woman that’d been through something similar. The reason I’m sharing now is simply to let any other woman that may be in a similar position know that there are a LOT of women in your shoes, your pain is real, this disease is already the devil but the standards of treatment are even worse, and that unfortunately that won’t change unless more women demand answers and better, more permanent treatment.
I’m feeling particularly passionate about this since I just had my second surgery in three years to “clean me out” and unlike last time, am still in debilitating pain. If you’re doing the math, that’s one surgery in 2017, two rounds of IVF the same year, a c-section the next year, and another endo surgery this year. Definitely not a pace I can maintain especially when this treatment is barely enabling me to get through my day.
A few days ago, out of frustration, I posted on IG stories asking for any suggestions to help with the pain, etc. and was blown away by the input. It sent me into a deep, deep rabbit hole (anyone that knows me knows this is not unusual…) and the discovery of a LOT of new information. I am not a doctor and I am by no means citing anything I’ve learned as fact, but it’s definitely inspired me to ask new questions at my post-op and even consider alternative treatment options. I wish I knew how to make charts in my blog software but alas, I don’t, so here’s a quick rundown of what I knew before yesterday and what I know now:
Endometriosis can only be diagnosed via laproscopic surgery (still true)
Endometriosis gets worse without treatment because every month that you menstruate, the endometrial adhesions in your abdomen also shed (bleeding internally) causing extreme pain and more growths (not necessarily entirely true)
When you have severe Endo/stage 4 situation, the only option for true relief is a hysterectomy (not true)
When you have Endo surgery and they burn off your adhesions (ablation) they can’t “get it all” especially on areas like your intestines and bowel (where I have significant growth) so I will always suffer from some level of pain/symptoms (not true, especially with better treatment options + true endo specialists)
You must be on a hormonal suppressant (birth control- ideally an IUD) long-term to prevent you from menstruating and therefore limiting shedding of your adhesions
Food/diet doesn’t really have any impact (totally not true)
What I know today:
Endometriosis should NOT be blamed on the uterus… a lot of more recent studies prove that the adhesions in the abdomen cause all of the pain and trauma, not the uterus, and not menstruating wouldn’t prevent that
Therefore a hysterectomy will NOT make you feel better, unless they ALSO excise ALL endometrial tissue in the abdomen
Also means birth control, etc. will not prevent the diseases from growing or worsening, although in some cases it may lessen symptoms like horrible period pain
There IS another treatment option aside from ablation called excision, where highly specialized endometriosis doctors actually CUT OUT all endometrial tissue in the abdomen
There are less than 70 of these doctors in the US and they all have bowel/colon/etc specialists on their teams to tackle things like adhesions on the bowel, etc. to ensure they remove 100% of the diseased tissue
When the tissue is fully removed from the abdomen they have less than 10% of patients experiencing disease regrowth and/or the need for additional surgery
Most of these doctors do not need to put their patients on long-term hormonal suppressants
All of these doctors highly recommend maintaining an anti-inflammatory diet, including limiting or eliminating irritants like gluten, dairy, fried foods, non-organic/grass fed meats, etc.
So. You could say I’m feeling a little deflated because I JUST had surgery and am having a terrible time recovering when in summary I may actually have not helped myself get better at all. On the other hand, if I wasn’t going through what I am right now, I never would have known ANY of the above. I can’t even begin to express my gratitude for all of you and how much you shared with me… it’s because of you that I can start to sift through my options and have real hope that my “chronic” disease may actually have a permanent expiration date. That feels amazing.
I’ve also committed to some pretty hearty life changes, both pre-op in order to better set myself up for recovery (HA) and post-op, in an effort to improve my quality of life. My current efforts to take back my life include the below but again, I am not a doctor and am only sharing my personal routine - speak to your own medical professionals to determine what might be right for you:
GF/Dairy limited, anti-inflammatory diet. Until surgery this had really helped my shoulder pain (I have diaphragmatic endometriosis, meaning I have a lot of adhesions on my diaphragm. Believe it or not, that causes deep, throbbing pain of the right shoulder ((good thing I didn’t rotator cuff surgery, since my rotator cuff is… fine)))
All the vitamins. I’ve let go of my over-researching on whole-food diets and have re-embraced the smoothie as an easy way to pack in a ton of veggies and nutrients quickly. I don’t eat a ton of meat so I try to add some protein in there as well - I have a sensitive stomach and have had great luck with Arbonne’s vegan, GF protein powder. It’s expensive but if you read their standards, you can basically order anything from them without worrying about additives, ingredients, etc. Worth it for me to not have to think about it. I also use their fiber powder which is critical for me if I up my protein intake. C’s been super supportive and loves them too! We usually use riced cauliflower, frozen spinach, and good antioxidant/anti-inflammatory fruits like wild blueberries and strawberries. I just use water vs. a nut milk or anything to keep it simple - I find the protein adds plenty of creaminess.
Supplements: I’ve also re-embraced supplements (organic, non-GMO, vegan) to help with everything from the inflammation to sleep. I skip a multi-vitamin as I try to only supplement what I know I can’t get from my diet. I currently take:
Tumeric (you all suggested this one!)
The most potent probiotic I can find (must be refrigerated - look for the one with the highest bacteria count)
Magnesium (also helps me with sleep issues)
Collagen or this collagen-builder (more to help with my skin - I throw it in my smoothies or mix it with water. The Arbonne one tastes better than Vital Proteins flavors and includes hyaluronic acid but the VP brand has a flavorless option with more collagen)
Water water water water - I aim for 3 litres per day
CBD. By far the most recommend pain management option you all suggested. I’m working directly with Equilibria Women (thank you Krista for the suggestion and introduction!) to figure out an appropriate dosage and routine - I will share how it goes.
A “clean” house - until they know the actual cause for endo I will do everything in my power to protect and strengthen Nell’s endocrine system, cellular health, etc. We’ve swapped every single cleaner, detergent, face wash, shampoo, etc. to clean, fragrance-free, safe brands. We don’t even burn candles anymore and we diffuse essential oils… things I never thought I would say!
So why does all of this matter? I’ve come closer then you’d think to letting this disease take ownership of my life. I have a family and friends, I have a career, I have a wonderful life that I’ve spent far too much time watching from the sidelines while I suffer. I haven’t gotten up with Nell a single morning this month because I was in too much pain. It kills me to listen to C and Nell laughing and sharing breakfast while I writhe in bed trying to “rest up” enough to get out of bed and in to work in time, just to come home and wish I could get right back in bed. It’s also a lot of pressure on C to make up where I come up short at home. Unrelieved pain is unbelieving taxing. I’ve had to work from home and/or miss valuable time with my team and colleagues so that I can take pain meds the night before and work from my bed with a heating pad. And I’m not alone. I joined a Facebook group today that one of you recommended and it has 73,000 members. All in the same boat. C told me a few weeks ago that he can’t imagine waking up in pain every day. I asked him if he wakes up NOT in pain every single day and he said “of course!” and I was stunned. I have no idea what that feels like. I don’t get any satisfaction out of complaining about it because everyone has “something”… their own stressors and challenges. I’d just kind of accepted that Endo was mine. Which it still is, but I’m no longer willing to watch my life straining in pain on the sidelines.
Resources you all shared with me and I found to be incredibly helpful:
Nancy’s Nook: Endometriosis Education on Facebook