My Story with Endometriosis Part 3: What I’ve Learned & What to Do If You Think You Have Endometriosis

 

I didn’t share my story to garner sympathy. I shared it to help bring awareness to how medicine is failing people with period pain. I am a woman highly educated in medicine and women’s health specifically. Infertility and period health are literally my areas of focus. I know how to interpret blood results, imaging reports, and I know how to communicate effectively with my doctors. It STILL took two full years of fighting every single day to get my doctors to believe me. This is why I’ve shared my story – because I genuinely have concern for any woman/person with period pain without a medical background. How can they be expected to navigate our health care system, and get the treatment they need to help support their pain and endometriosis complications?

I consider myself incredibly fortunate. It took me two years to get my surgery once I really started fighting for my diagnosis. It takes the average woman a lot longer. I have many patients who are still fighting to be assessed, I have many patients who have been pushed into fertility treatments they’re not comfortable with without having their period pain assessed, and I have many patients who have missed their window to conceive because their period pain was not properly assessed. This is absolutely not okay, and we need more awareness to start making treatment for this disease much more accessible!

I’m also so fortunate that I’m a Naturopathic Doctor. I know I mentioned earlier that I resigned myself to living in pain and nothing helped. But when I really take a step back and consider how advanced my disease was, and how highly functional I was, clearly the supports I had put in place were working for me. Many of my patients with endometriosis are on disability and completely unable to function in their day to day life when they initially come to me.

Takeaways If You’re Concerned You Might Have Endometriosis

All this to say, if you’re struggling with period pain, let me save you years of wasted time. I want you to understand the realities of having endometriosis, and the next steps to take if you’re concerned you have this diagnosis. Here’s what I learned on my 20-year journey with this disease:

What Endometriosis Can Feel Like

  • Endometriosis can even just be bad pain for one to two days a month. Do not let anyone tell you this isn’t enough pain to qualify as endometriosis.

  • The symptoms can vary greatly, and in some cases might not even be severe. In 20-25% of women with endometriosis, they are completely asymptomatic, and may only discover they have endometriosis when they try to get pregnant.

  • Endometriosis runs in families, and we know there is a hereditary component to endometriosis. Just because your mom, sister, grandmother, aunt, etc. have period pain, does not mean it’s normal.

  • Just because something is normal for you, it doesn’t mean it’s healthy. Frankly, let’s just stop normalizing women’s pain (and period pain) altogether because while period pain may be common, it’s absolutely not normal. In fact, endometriosis is much more common than you think, affecting 1 in 10 women.

  • It took me 20 years to get a diagnosis- and it will take you a long time too. According to the most recent research, there is an average delay in the diagnosis of endometriosis between 8 to 12 years, so start fighting for your diagnosis now. If you want children, it’s important to consider your fertility timelines, because you don’t want to be starting this diagnostic process when you wanted a baby yesterday.

  • Infertility is a warning sign of endometriosis. Do not let fertility clinics give you the ‘unexplained infertility’ diagnosis and push you into other treatments if your period pain has not been properly assessed. It’s been found that 25-50% of women struggling with infertility have endometriosis. To my point above regarding variability in symptoms, even if you don’t have period pain and are struggling with ‘unexplained infertility’, you should be assessed for silent endometriosis.

How To Get Good Endometriosis Care

  • While incredibly upsetting, research has found that doctors perceive menstrual pain as something women should be able to manage, causing inability to disclose the extent of suffering to our doctors, and putting up a significant barrier to getting the care we really need. This means you’ll have to be brave, advocate for yourself, and at times, potentially even disagree with your health care providers if you feel they’re not taking you seriously.

  • Women’s pain often isn’t believed and we know there is a significant Gender Pain Bias that exists. We know there is significant underestimation of women’s pain, and we know that women are wrongly believed to be more sensitive to pain and therefore are often distrusted when they report their pain.  

  • All of this is medical gaslighting. You will question your sanity and the level of pain you’re actually in during this process because you will have many doctors turn you down. Remember that your pain is real, and you will unfortunately have to persevere and continue advocating for yourself despite this.

  • I have read a lot of articles on how to effectively communicate your pain if you are a woman so that you’re actually taken seriously. Unfortunately, the leading recommendation from Doctors & experts seems to be to take a support person with you to back you up, and to corroborate the level of pain you’re experiencing. I wish we could be taken at face value right now, but that doesn’t seem to be our reality at present. Think about who to bring as your support person to appointments!

  • Work with a Naturopathic Doctor (or other primary care provider i.e. a Nurse Practitioner) who is highly experienced with endometriosis, so they can help direct you to the RIGHT type of endometriosis care. There are a lot of treatment options out there, and sadly there are many gynecologists who are misinformed on treatment efficacy and completing the wrong types of surgery for endometriosis. We need to make sure you’re with the right endometriosis-specialized OB from the get-go to ensure you’re getting the best care for your goals.

  • If you’re overwhelmed and don’t know where to start, Nancy’s Nook is an incredible resource and helped educate me so I knew my options. It also helped me understand the questions to ask to make sure I was working with the right gynecologist/surgeon.

What Supports to Put in Place Now

  • Your mental health will suffer due to the amount of pain, possible fertility struggles, and gaslighting you’re going to experience. We know that endometriosis increases the risk of depression, so do not ignore your mental health. Strongly consider working with a therapist.

  • Pelvic floor physiotherapy is a must to help support pelvic pain, as it has been found to reduce inflammation, alleviate pain, and significantly improve quality of life in women with endometriosis.

  • Naturopathic medicine can help manage the day to day pain, your ability to function, and may help to optimize fertility with endometriosis. We will also help counsel you on how to navigate endometriosis treatment options, help you navigate when surgery would be appropriate, and help assess your fertility status. Keep in mind that depending on how advanced things are, you may also need help from a highly skilled surgeon (like I did), which is totally okay since we strongly believe collaboration is key!

Other Takeaways & Resources

  • Based on my experience, (and the research I’ve found), doctors are very hesitant to acknowledge or treat endometriosis.

  • Based on my experience, I found this to be even more pervasive at fertility clinics. That said, this might not be true to everyone’s experience.

  • I had both the worst and best encounters with male doctors throughout this process. There are incredible male gynecologists out there, many of which are endometriosis specialists so don’t shut the door on them immediately.

  • Most importantly, if you feel something is wrong in your body, remember that no one knows your body better than you do. There probably is something worth looking into, so don’t give up on looking for answers.

  • In the meantime, here are some more resources on endometriosis:

My hope by sharing this story is that in the (hopefully) near future, women won’t have to fight so hard to be heard when we’re in pain, and that we’re taken at face value and BELIEVED when we enter into our health care system. Until that happens, reach out to us if you need support!

A Final Word

If you’re struggling with Endometriosis, please know that you are not alone, and there are things we can do to help!

If you want more information about how Naturopathic Medicine can help support your endometriosis, you can check that out here!

Ready to make a change?

If you want to learn more about how Naturopathic Medicine can support endometriosis, feel free to reach out to the clinic, or book a complimentary consult with me here.

With loving compassion,

Dr. Alessia Milano, ND

 
Fertility, Hormones, AutoimmunityDr. Alessia Milano NDThe Orenda Clinic & ApothecaryEndometriosis