Have you ever had one hell of a period cramp? The debilitating pain might have led to some tears while you curled up into a ball on the bathroom floor. For some women, it could be endometriosis. Women with this condition experience physical and emotional impacts on their day-to-day lives such as painful sex with their partner, being unable to show up for work, intense bloating, and general pain, even when they don’t have their period. Often referred to as the ‘invisible illness,’ endometriosis pain is felt and unseen, which undoubtedly contributes to stigma, misunderstanding and misdiagnosis within the patient community.
With the on-going pandemic, healthcare and access to healthcare professionals has changed drastically. Patients experiencing non-urgent health conditions continue to experience delays or gaps in access to treatment and health care information. With 500,000+ Canadian women, girls and transgender individuals battling endometriosis, it’s necessary to have conversations that raise awareness of this condition and ensure patients have access to the resources and support they need.
In honour of Endometriosis Awareness Month this March, my hope is to build off a growing momentum that has individuals from all over the world talking more openly about this topic and becoming #EndoEmpowered. I had a chance to sit down with one of Canada’s leading gynecological experts, Dr. Jamie Kroft to ask important questions and get much needed answers.
Endometriosis is a condition that occurs when bits of tissue similar to that lining the uterus (endometrium), can be found growing where they’re not supposed to be, such as on the peritoneum, which covers a lot of the abdomen, or on internal organs like the ovaries, Fallopian tubes and bowel. Just like the uterine lining we shed during our monthly cycles; this tissue similar to the endometrium is triggered to shed by the hormonal changes that signal your period to start. But in the case of endometriosis, the tissue gets inflamed and can cause intense pain in the abdominal area. The root cause and right treatment option can be just as complex as the diagnosis.
Dr. Kroft notes that 10% of the Canadian population is affected by endometriosis, and that it can take nearly a decade for a woman to be fully diagnosed. In her Toronto-based practice, Dr. Kroft specializes in low-risk obstetrics and minimally invasive gynecologic surgery. Her clinical practice focuses on the treatment of endometriosis and fibroids.
To all my babes and endo warriors who are suffering, here is a breakdown of my key learnings with inspiration from my discussion with Dr. Kroft that I hope you’ll find useful.
What is a symptom checklist for endometriosis?
- Painful periods, pelvic pain and cramping that might show up before and several days into your period. That lower back or abdominal pain you feel? That can be a sign as well.
- Pain during or after sex is common with endometriosis. Of note, pain during intercourse from endo is often felt deep inside, or at the top of the vagina itself, rather than on the outside or the opening of the vagina.
- Pain with bowel movements or urination. You’re most likely to experience these symptoms during a menstrual period.
- Infertility. Sometimes, endometriosis is first diagnosed in those seeking treatment for infertility.
- Sometimes, you can have endometriosis, but it shows up elsewhere, like your belly button (yes, you can bleed out of your belly button), your brain, lungs and even around your heart.
- You may experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.
Who should you see if you think you have endometriosis?
Your health care provider is a great start as your doctor will have a baseline of your normal everyday health. They are also your first point of contact for a referral to a gynecologist. When your health is at stake, you are your own biggest advocate. Tell your doctor that you think you might have endometriosis and explain why, then ask them to give you specific reasons why they agree or disagree. If you think you’re being brushed off, say something like, “I need you to know I’m genuinely concerned, and this has affected my quality of life. If you were in my situation, what would you do?”
Still don’t feel heard? Ask them to refer you to a gynecologist. This will show that you’re not willing to let your concerns go and will hopefully give you someone to turn to for a second opinion. Don’t worry about offending them; it’s their job to listen to you. This is a very time-sensitive condition, especially when it comes to minimizing the risk of surgery. As for additional support, check out The Endometriosis Network Canada (TENC). Beyond the website, they also have a Facebook group of women who share everything from their experiences to their recovery protocol. There is also a group called “Endo ACT” that has brought Canadians together, including healthcare providers to advocate for better awareness and funding around endometriosis in Canada.
What if you’re not taken seriously by your doctor about the severity of pain?
Start by logging your symptoms. Giving your doctor a general list of your symptoms won’t get you far when it comes to endometriosis. Many typical endo signs only strike at certain times during your cycle, so the more specific you can be with your doctor, the better. Start keeping track of exactly when each symptom happens, as well as when your period starts and ends. For example, when do your cramps kick in and how long do they last? Do you have any bloating? Constipation? Write all of it down. Any issue that doesn’t seem normal is worth mentioning, including things like pain during sex or urination. Don’t leave any details out. This will give your doctor the clearest possible picture of your symptoms. (Plus, it’ll show them just how seriously you’re taking this.)
Why is this disease so time-sensitive?
If women delay the time to diagnosis and treatment and aren’t adequately treated over a long period of time, they are at risk of developing chronic pain syndrome. This occurs when the brain is so used to getting pain signals from whatever stimulus is causing the pain, that even if you eventually treat that stimulus, the brain will continue receiving abnormal pain signals. The other reason you want an early diagnosis and early treatment, is because endometriosis can cause inflammation in the pelvis which can negatively affect structures in the pelvis like the Fallopian tubes and the bowel. You can start having anatomic distortions which can affect fertility down the road or cause an increase in pain or other complications. If you detect and treat endo early, then you can theoretically prevent worsening it. Since there’s no surgical or medical cure, as long as someone is menstruating, new endo can form. Usually, it’s not until women are post-menopausal that they can get full relief of their symptoms, and even then, medication can still be required for management.
How do you make a diagnosis? And why does it take nearly a decade to diagnose someone?
Today, it takes an average of five years to receive a proper diagnosis. Often, women are told at a young age that pain with menstruation is normal, so they’re unaware that they might have endo. With endometriosis occurring in 10% of the Canadian population and 75% of women having painful periods, ‘period pain’ is often normalized. This can leave patients in severe pain, cause sickness and result in missed days of school or work. Because patients aren’t aware that this is an issue, they often don’t seek immediate medical attention to treat the pain.
What treatments are available for endometriosis — and what are the pros and cons?
Birth control pills – birth control can be taken in the regular fashion where you still get your period, or, taken continuously so that you don’t get your period. While some people are concerned about taking the pill continuously, in my discussion with Dr. Kroft, she notes there is no reason that the body needs to menstruate when taking the birth control pill, so it is considered safe, however, you should always consult with your healthcare provider to ensure it’s right for you.
Oral Progestins – pills containing the hormone progestin that targets endometriosis itself. Some people think that estrogen, which is in birth control, is not great for endometriosis because it can drive it and make it less sensitive to the progestin, whereas the progestin alone may have more beneficial effects. Most women don’t ovulate with it or have a period, but it’s not a birth control pill.
Progestin IUDs – Stand for intrauterine device. There are different options available in market. IUDs are a long-acting birth control that can be used to prevent more than pregnancy. Often progestin IUDs can be used to help treat endo as well as other conditions such as chronic pelvic pain and heavy periods.
Endometriosis surgery – While surgery isn’t necessary for every case of endometriosis, some patients do end up choosing this route to help alleviate their pain. However, it’s important to note that surgery is not a cure. Just like any other surgery, there are risks of surgery complications such as infections and bleeding. There’s also a chance that the endometriosis could return depending on the severity of your condition, which is why it’s always good to review your options and look at a holistic approach of diet, lifestyle, oral medications and/or injections.
Is birth control a ‘band-aid’ option?
Thankfully there is more out there than just birth control! There is a new medication that is Health Canada−approved, specifically for women with endometriosis called Orilissa. It’s a non-hormonal pill, taken once a day, that lowers circulating estrogen levels, because endo is estrogen-driven. Dropping this hormone in the body helps decrease the pain. It’s not a form of contraception − there is a higher and a lower dose. The only thing is that the higher dose can fully drop your estrogen, which can lead to thinning of your bone if you go over six months. This can be something you can track and discuss with your doctor.
There is also an injection that is administered once a month or once every three months. This shuts off estrogen and puts patients into a medical menopause. This is called GnRH agonists and is usually reserved as a second- or third-line option for patients who have severe symptoms, or if other options have failed them. Reach out to your healthcare provider to understand what option will work with you.
If symptoms improve, can a patient stop treatment?
Whether you choose to stop treatment when symptoms lessen or feel more confident with continued medical treatment, the purpose of treatment is to improve your quality of life. Many women want to adopt a healthy lifestyle vs. starting medical treatments or surgery. Switching up your nutrition and lifestyle can make a difference to treating endo but there is no scientific evidence for this.
What can we do to support the endometriosis community?
The opportunities are endless when it comes to showing our support for the endo community and putting a face to this debilitating condition. With online communities, support is becoming easier to find.
Resources like The Endometriosis Network Canada (TENC) can also be a great place to explore with access to trusted information.
As we head into Endometriosis Awareness Month, I encourage all my endo warriors and supporters to continue to help shed light on this condition in every way you possibly can.
While endo may be invisible to some, your voices are not. I hope you’ll share your stories and experiences using the hashtag #EndoEmpowered to honour, share, embrace and empower the endo community and beyond.
I’d like to extend a special thank you to Dr. Kroft who took the time out of our day to have this conversation with me so that I in turn, could distill the information down to my community. It all starts with a conversation!
So, how will you stay #EndoEmpowered this month?