Be a Bad-Ass Endo-Self-Advocate
I saw an online review for this awesome book Beating Endo (quick, go order it) that was a little negative, but kinda true. In a nutshell it said the book had heaps of great ideas if you were rich and could afford it all. As for the general population of sufferers, they’d have to stick with ibuprofin and surgery.
True, the book mentions gastro-specialists, pelvic floor specialists, nutritional therapists, and surgeons. I do too. ANYONE WHO IS WORKING WITH ENDO SHOULD KNOW + RECOMMEND THESE MODALITIES. But sadly much of the medical community is a wee bit behind the times (17 years, to be exact) and may not realize there’s so much more we know about approaching endo + her related symptoms than birth control, lupron, or hysterectomy. How that hurts us as patients is that it can be downright challenging to get the referrals and tests that we both need and deserve. And without referrals from our general practitioner (GP), insurance won’t cover it, and you’re suddenly paying out of pocket. Bummer.
This is why we as endo-patients need to become our own best endo-advocates, understanding that in order to get referrals and testing we may have to go the extra mile to help educate our doctors about what we need, and why. Just like those terrible pharmaceutical ads have people running in to their docs to ask for specific drugs, you as an endo warrior need to arrive at your appointment with specifics you’re asking for. Think blood tests, stool tests, referrals to specialists and physical therapists (I list a host of ideas below!). For yes, while these are all pricey on their own, if you have decent health insurance they may be totally covered. Or, if you have mediocre medical, you could at least aim for a discounted rate.
Please note, I have nothing against doctors and this doesn’t apply those amazing docs out there who are winning in every sense. Truth is, most doctors barely have time to see patients, and thus zero time to investigate every chronic disease symptom out there (and there’s a lot). So instead of expecting your doc to be a world renowned expert on everything endo, I’m here to tell you that’s now YOUR JOB. And it will be for the rest of your life - unless your doctor is literally an endo expert. So turn that frown upside-down from your last terrible doctors appointment and start to love your new role as endo-investigator and educator. Can you smell the fresh-cooked feeling of empowerment? ;) Trust your body, listen to her symptoms, and use your doctor as another tool (rather than a road block) to help you start to investigate root causes.
Let’s check in on how to be a bad-ass endo patient and get what we want, need, and deserve.
Step 1: Know treating your disease is more than hormonal birth control
The first step to approaching endo care is to know that endometriosis is not caused by your cycle and it is not caused by estrogen, estrogen dominance, ovulation, menstruation, or bad luck. Well, maybe some bad luck, but definitely not the other stuff. So why do us endo-ladies and even some doctors often think it is? Probably because the pain is related to menstruation, and we’ve heard it’s related to estrogen, and it’s sometimes said to be caused by retrograde menstruation. Those are good reasons why you may think your endo is solely attached to your cycle, and why our current mainstream forms of treatment involve stopping our cycles with hormonal birth control pills or hormonal control methods such as Lupron, with the aim to minimize estrogen levels in in our bodies as much as possible.
The truth of this is, hormonal control is Western medicine’s best treatment option right now because it’s the only way they know for certain how to deal with symptoms of endo - namely pain. Because estrogen helps fuel the fire of endo growths, some women indeed find pain relief from reducing estrogen overall or shutting off the normal hormonal cycle through birth control pills. This is true for many who use hormonal therapies … although not all, and not without side effects, and not without the endo continuing to grow. I know I had 2 years between surgeries and I was birth control that entire time - the endo still grew back.
So your key takeaway here is this: if you have a doctor that only wants to prescribe you birth control or surgeries, you can help inform them of your personal stance on whether or not you want/need it (very personal), and then either way ask to continue the discussion on next steps of treatments. Because, remind them, hormones are only a band aid and not a solution for endometriosis.
Say it out loud: “Thanks so much for that suggestion. Now, I’d really like to talk next steps for treatment and referrals so I can continue to address my worst symptoms”.
Step 2: Ask for a referral or test with awesome endo-vocabulary
Ok, you have the doctors attention - you’ve appreciated his/her usual approach and are now ready for the big ASK. To advocate for your best insurance outlook, your language should help educate (the why) as well as leave the doctor with a question so that s/he feels like they’re a part of the solution, a proverbial partner in this journey, rather than just telling them what to do [note: not usually appreciated. This goes for toddlers as well].
I’ve also underlined key words I’d like you to both say out loud and memorize if you don’t know them. Use these words to sound both educated and informed, which may truly help your case if you - you know - have a doctor like that who doesn’t take you seriously because of accent, skin color, education level, place of birth or simply because you’re a woman. If you talk like an equal, chances are you’ll be treated more like an equal. #word
Symptom: The Basics
If you’re new to this game and haven’t had a blood panel recently, it should be easy enough to get one. In case you need extra help, here’s what to ask for":
Because I’m dealing with such intense symptoms I think it’s really important we do some basic blood work to check for certain biomarkers. Specifically, I’d like to look at my vitamin D, ferritin (iron), thyroid, and B12 levels. Is there anything else you think I should test for?”
Symptom: Deep fatigue
If you have chronic fatigue with your endo let your doctor know that
“Endometriosis is directly related to immune system dysfunction (not working correctly) and often correlates with hypothyroidism and other autoimmune disorders such as Hashimoto’s thyroiditis. So I think it’s essential to test my thyroid function as well as other to autoantibodies just to rule out the possibility. Do you have any other suggestions based on my debilitating fatigue I should test for?”
Symptom: Body wide pain
Some women have body wide pain that may not be endo-related at all. If this is you, let your doctor know that.
“Endometriosis can have co-morbities such as fibromyalgia, lupus, and multiple sclerosis. So rather than seeing my body pain I’ve described as endo-related, I’d like to make sure I’m not dealing with something so much bigger since I have many of the same symptoms. How can we test for these? Do you have any other suggestions for testing based on my debilitating symptoms?”
Symptom: Gastro-Intestinal Distress
If you have terrible gastro issues with your endometriosis and/or an IBS diagnosis let your doctor know that:
“Endometriosis and digestive issues are often connected because of deep gut infections or autoimmune issues. One study showed 80% of women with terrible IBS symptoms actually tested positive for SIBO (Small Intestinal Bacterial Overgrowth), while there’s a large link between coeliac (see-lee-ak) and endometriosis as well. Based on these studies, and the fact I have chronic _______ (insert: constipation, nausea, bloating, diarrhea, etc), it’s absolutely necessary we continue to look for the root cause. Who is the best doctor you can refer me to based on these symptoms?”
Symptom: Chronic Pelvic Pain
If you have chronic back, pelvic, vaginal, rectal, or any pain really - heck even if you just have endo - get a referral to a pelvic floor physical therapist. Tell your doc that:
“I know endometriosis isn’t caused by pelvic floor dysfunction, but numerous studies have shown how it can both contribute to pain, as well as have pain contribute to its development. Some women who have had advanced endo removal still had the pain remain due to pelvic floor spasms, it’s that connected. Because of this, and my history of terrible _______(Insert: vaginal pain, pain with sex, pelvic pain, incontinence, pain with bowel movements, pelvic pain, etc), it’s essential that I see a pelvic floor physical therapist. Who can you refer me to in the area?”
Step 3: Use Serious Descriptors:
Women have been know to downgrade our suffering from time to time. “I’m okay” - we say. Nope. I want you to make it plain as day how much you’re suffering. Heck, ham it up. Use phrases like these to help you doctor (who honestly have no idea what it’s like being you!) understand just how miserable you are, and always say your specific/acute symptoms rather than just saying you generally feel unwell.
My symptoms of __________ are debilitating.
Because of ________, I cannot function in my day to day routine.
The ______ is so crippling it’s ruining my life.
Because of _______ I feel like a prisoner in my own body. This is no way to live.
Using language like this will help communicate to your doc that these specific symptoms are serious, and not something to be brushed off with birth control. They need further investigation STAT.
Step 4: Big Guns
You’ve listened to your doc with respect, voiced your concerns, stated the direction you would like to go with your continued treatment, used big words and accurately described just how bad your situation is. And s/he still won’t budge?!?!?! Last step, pull out the big guns.
Calmly write down your symptoms as you described to your doctor. (if you’re too nervous to do this in office, prepare it beforehand and have it ready in your pocket to pull out)
Write that s/he deems your symptoms unfit for further care.
Now have him sign that paper.
Yes, you’ll be nervous, but hot damn so will s/he!!! This is a little paper missile brimming with malpractice suit (not that you would, but they don’t know that). Your doc may suddenly have a quick change of mind for brushing off your symptoms, and decide to partner with you for further investigation and give you that test or referral your after - or at least compromise on next steps.
Still no go? Fire them. Find a new doctor. Even if it’s a 3 hour drive away, you need a doc on your side and a partner in healing.
If you have insurance, go ahead and give them a phone call (this is an ancient art I hope you can remember how to do ;). Yes, CALL THEM, and ask about your benefits as far as chiropractic, massage, acupuncture, and nutrition goes. Chances are, half of you may have full or part coverage for these options you never realized you had! It’s free to call and ask, but if you qualify you’ve just hit the free-bee jackpot!