How to Advocate for Yourself

This past weekend, I hosted the very first Baltimore Flow meetup. It was small but AMAZING. It's incredibly cathartic to spend just a couple hours with people who know exactly what you've been through -- and being able to share what I've learned along the way made it feel (almost) worth it.

If you have endometriosis or you know someone with endo, you probably won't be surprised to learn that our stories can be pretty similar. Maybe not in terms of symptoms or physical experiences, but when it comes to years-long histories with dismissive doctors, misdiagnoses, and being told misinformation, it's a disturbingly trite story.

It takes an average of 10 years for a woman with endometriosis to get an accurate diagnosis. Because symptoms do vary widely and because they have commonalities with a number of other conditions, misdiagnosis is a huge problem. But that alone does not excuse the rampant lack of knowledge many gynecologists have regarding the disease. Nor does it excuse the dismissal so many women receive again and again, being told that their pain is normal or worse -- all in their heads.

The new endometriosis commercial on television (sponsored by pharmaceutical company Abbvie because OF COURSE IT IS), encourages women to talk to their doctors if they're experiencing heavy periods, chronic pain, or uncomfortable sex.

That's great and all, but what if you talk to your doctor and he or she says your experience is nothing to worry about (like mine did)? What if all you get is a pat on the head and a prescription for painkillers or birth control (like I did)? What if you want more?

Women deserve better. Honestly, Abbvie would have better spent their money educating doctors, but of course we can't trust them to do that. Abbvie is the maker of Lupron which was prescribed to me by doctors who promised me it was a "cure" and that side effects would be minimal (they can actually be quite devastating). LOL.

In light of all this, I wondered what might actually be helpful for women. So if you think you have endometriosis -- or even if you just think something isn't *right* with your period, I've decided to provide a list of tips and questions for you to discuss with your doctor.

But first a couple of disclaimers: First, I am not a doctor, and I don't know everything there is to know about endo despite having done a ton of research. These suggestions are not meant to be "expert advice" but rather what I've learned by making one choice or another along the way.

Second, although it sounds like I'm shitting on doctors, I don't actually think most doctors are bad. I think the majority have good intentions but are restrained by the structure of our healthcare system; insurance companies have a lot of control over how many patients they have to see in a day, and their busy schedules likely don't allow a whole lot of time for staying as up to date as possible. What this means for endometriosis patients is while your doctor may not be lying to you, he or she may give you misinformation (*ahem* like Lupron is a cure for endometriosis). Unless your doctor is an endometriosis specialist, chances are he or she does not know a whole lot about endo beyond the fact that birth control can suppress its symptoms, and that includes current best practices for treating it. Which leads me to my first point...

Be confident; you're an expert on your own body.

I know most of us grow up deferring to doctors, and with good reason. They complete years and years of schooling and training to do what they do. But that doesn't mean they know everything, and they certainly can't know what it's like to live in YOUR body every day.

So if you think something is wrong, persist until your doctor listens and explores possible diagnoses with you. Debilitating period pain is not normal. Bleeding between periods is not normal. Cramping between periods is not normal. Periods that last longer than seven days are not normal. Vomiting from the pain is not normal. Painful sex is not normal. I could keep going, but then you'd probably stop reading this blog post, and I think you get the point. 

Trust your gut if something doesn't feel right. And if your doctor doesn't listen, fire his or her ass. Sorry not sorry. And yes, I said "fire." I know we don't think of doctors as people who work for us but ultimately that is exactly what they are. We pay them to keep our bodies in tip-top shape. You wouldn't keep going to a mechanic who tells you that that grinding sound your brakes make is normal, would you? So why keep going to a doctor who tells you excruciating pain that keeps you home from work once a month is normal? Y'all, we only get so many paid time off days.

Ask: Do you think I have endometriosis?

Or "Do you think I have PCOS? Do you think I have a fibroid? Do you think something is wrong?" It is OK to self-diagnose, and if a doctor doesn't like that TOO BAD. See previous section. 

Endometriosis cannot be seen on any kind of imaging (ultrasound, MRI, x-ray, etc.), so doctors cannot make this diagnosis without performing surgery. A rare few may be able to do an internal exam and determine that there are adhesions, shifting your organs away from midline, but even then, without going in, they cannot diagnosis or determine the extent of your endo. Since surgery is understandably disruptive and expensive, it is not uncommon to get a wishy-washy answer from a doctor who isn't super well-acquainted with the disease.

Ask: Do you perform ablation or excision surgery?

Assuming your very good doctor takes you seriously and agrees it is time to figure out why your uterus is trying to kill you, that means he or she has agreed to perform surgery. But what many doctors do not discuss with patients is whether they will be performing ablation or excision surgery.

Both are laparoscopic which gets touted as "minimally invasive." That's because a small incision is made in your belly button and then one or more small incisions are made elsewhere in your abdomen (talking like a half an inch). The surgeon then goes in with tiny cameras and tools to remove the endo tissue. What this means: Your scars will be minimal. What this does not mean: Your recovery will be easy. Just an FYI.

The difference is in ablation surgery, the surgeon burns away the endometriosis tissue. With excision, the surgeon cuts it away. Evidence indicates that ablation surgery is significantly inferior to excision surgery in terms of the period of relief. Neither surgery cures the disease, and no doctor should say it does. While some women do find relief with ablation surgery, any many need another surgery two years later. This is why many endo patients have multiple surgeries. Excision done by a specialist should result in at least five years of relief.

But endometriosis is a cumulative disease; with each cycle, the rogue tissue grows. Still, excision surgery with lifestyle and diet modifications offers the best chance at long-term recovery. Most general GYNs only are prepared to do ablation surgery, so if you want an excision surgery, you will have to seek out a specialist. Be prepared that they are few and far between. I had to travel out of state for my surgery, and many specialists do not accept insurance. More on *that* clusterfuck in a later post.

And most importantly, no matter what anyone or Lena Dunham tells you, hysterectomy does not cure endometriosis.

What to know about drugs.

Because surgery is considered an extreme option and is disruptive to your life as well as expensive all around, most doctors try to manage endometriosis with medication. I have come around to the personal belief that a medication should be used only what it's intended for (i.e., birth control should be used only for preventing pregnancy, not for managing pain). And while everyone should be able to get surgery if they have endometriosis, it is not always affordable or practical, and with endo, you might get to the point where you need relief. Doctors may offer the following drugs, and here is what you should know about them:

• Antidepressants: This is NOT a treatment for endo FFS. I can't tell you how many doctors have suggested antidepressants/antianxiety meds (or suggested raising the dosage) just because I cried in front of them. I know this happens to a lot of people, but you know what, it's not unreasonable to cry when you experience pain most days of the month and no one can help you. I do think antidepressants/antianxiety drugs can be wonderful. I personally have benefited from them greatly. However, they don't help when something external -- like a mismanaged and mistreated painful disease has no end in sight -- is happening. Only accept this prescription if you think you need it to manage clinical depression and anxiety.
• Birth control: I went on birth control to manage my pain and PMDD. I went off birth control because it gave me a blood clot. We are the first generation to be on birth control long-term and as more and more of my friends struggle with infertility, I do wonder what that means for us. But in terms of endometriosis specifically, birth control can go a long way in quelling the symptoms -- but only the symptoms. It does not minimize the disease and as soon as you go off birth control, the disease may be rampant which could have implications for pregnancy if that is in your future.
• Lupron: As you may have guessed from my earlier comments, I am NOT a fan of this drug. When I had no relief from my first endo (ablation) surgery, my doctors finally put me on Lupron. They presented it to me as a cure, telling me it would "burn" away any microscopic tissue left over after the surgery. They told me it was safe. At the time I was extremely sick and desperate to regain some semblance of quality of life. I didn't do my research. Lupron is meant to be a chemotherapy drug for prostate cancer. It works by acting on the pituitary gland and essentially shutting down your reproductive system, putting you in temporary menopause. The problems with this are two-fold: 1) It is NOT a cure; all it does is give you a break. 2) The side effects are extreme. I personally tolerated it well, experiencing only hot flashes and moodiness, but many women suffer memory loss, broken bones, and worse. Again, I'm no doctor, but I think this drug should be prescribed only for its intended use and would tell any of my friends not to accept a prescription for it.
• Painkillers: Look, the hard truth of endo is that it is very painful and it only gets more and more painful if left untreated. Over-the-counter pain meds are unlikely to provide much relief, and the more prescription painkillers you take, the more side effects you may experience (like ulcers from heavy-duty NSAIDs, etc.). Painkillers are a part of the deal, but they only manage the symptom of pain; they do not treat the disease. Which leads me to...

Ask: How else can I manage my pain?

My first GYN told me she didn't "believe" in acupuncture but I could try it since she didn't know what else to do for me. WELL. *I* believe in it because it has done wonders for me. I found an amazing acupuncturist who focuses on women's reproductive health and even if it doesn't relieve my pain instantly, it improves my wellness immensely by improving the quality of my sleep, decreasing my stress levels immediately, and overall acting as a kind of "reset" button for my body when it is feeling depleted.

Other ways to holistically treat your pain? Consider changing the way you eat. Sugar, processed foods, alcohol, coffee, and soy can aggravate endometriosis. Get enough rest. Your energy fluctuates throughout your cycle and honoring where your body is can work wonders. Meditation can help you get your mind right, decrease your stress, and improve your pain indirectly. Massage can also be beneficial for helping your body eliminate excess hormones and helping you relax. Switch out chemical-laden products for natural ones that don't block your body's cleansing processes.

Look for other sources of pain. Many women with endometriosis also have interstitial cystitis which can be improved by eating a low-acid diet. Many women with endo (myself included) have tight pelvic muscles (a well-trained endo specialist will be able to tell you if your muscles are tight). This compounds the pain and you can get a referral to a pelvic floor physical therapist.

Ask: Why?

This is probably the most important question you can ask and I recommend asking it over and over again. Your doctor might not have all the answers but someone out there does. Ask why you're experiencing xyz symptoms. Ask why your gynecologist is recommending abc path of treatment. Ask your doctors why they do recommend what they recommend or why they haven't recommended what you think might work. 

Do NOT hesitate to ask questions and do NOT let a doctor rush you. Find a new one if you're not satisfied that things are being explained to you properly. It is YOUR body and YOUR life and you deserve to know what is being done to it, how it is being treated, and why.

xo,
S