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Pelvic health: an advocate’s guide to living with endometriosis

By Laura Pearl Spivack

I have a condition called Endometriosis (coupled with Adenomyosis, Poly-Cystic Ovarian Syndrome, and a host of other crap). It took me so long to get a proper diagnosis that I forgot what being pain-free felt like. I literally forgot. Women’s health is a social justice issue- and no, that is not too broad a proclamation.

This past spring, after seeking out an endometriosis specialist, I essentially had to convince my doctor to do yet another laparoscopy. He explained that doing another invasive procedure would be essentially useless. He explained that even with a clearer diagnostic picture, "there was nothing more he could do to manage my pain.” Fast-forward through the arguing and convincing, to me being woken up from anesthesia to a massive apology from my doctor. He had found a large lump in my fallopian tubes. Without immediate intervention, this could have caused permanent infertility and major damage to my pelvis. 

I was conditioned by the system to not listen to my body. I went into surgery not feeling anything too abnormal, because to me, feeling like my uterus is going to fall out through my cervix is normal. It's just a day in the life. This third surgery found me covered in endometriosis; on my bladder, bowels, cervix, ovaries…the whole shebang. I was so surprised to be taken seriously that I cried from joy when the doctor explained how severe my case was to my family, and asked him to take the pictures of my tissue home (much to the chagrin of my visitors post-op).

How did this happen? 

It's systematic 

I am a passionate advocate for others through my work. I speak about pelvic health from the social media rooftops. And yet, I fell privy to the schemes and tricks: believing that pain is normal, that sex is supposed to be painful, that heavy periods are no big deal, that sick days every month are okay too. When the whole world is telling you to pick yourself up and keep moving on, how do you advocate for yourself without going crazy? Historically, women are less likely to be taken seriously for their symptoms compared to men, and are less likely to be treated promptly for the same symptoms as their male counterparts (16 minutes slower, in fact). A 2001 study in a medical journal actually stated that doctors believed “women had a natural capacity to endure pain", and women were up to 25% less likely to receive opioid painkillers. 

Legislators have a lot to say about women’s health in North America, dictating who has access to what, and what the appropriate treatment of a woman’s body is. But none of the work being done is actually advancing care for women, nor is it even a step in the right direction. There is no cure for Endometriosis and any of its associated counterparts- a disease that probably touches at least one of your good girlfriends personally (10% of all women). It has become the disease that everyone is talking about, but no one is doing anything about.

I mean, think about it. Would a widespread and pervasive disease affecting 1 in 10 men still be able to proliferate without any research or advances?

Probably not.

This band-aid solution sucks

The management of Endometriosis costs Canada approximately $1.8 billion annually. Young girls are prescribed estrogen-heavy birth control to mask the symptoms, young women are being prescribed Lupron (a costly and dangerous form of intra-muscular injections that has several class action lawsuits against it), and women are having hysterectomies without the opportunity to make an educated decision; all in the hopes of finally stopping this cycle of pain. What research shows, though, is that none of these treatments cure or appropriately treat endometriosis. They merely mask associated symptoms. Doctors are still not even aware of why endometriosis occurs. 

The answer isn’t to feel sorry for ourselves (although sometimes that’s okay). It's also not refusing to leave our beds (again, sometimes that's okay too). The answer is to play by our own rules. I speak openly and unapologetically about my condition to anybody who will listen, and have become an unofficial expert for my friends’ pelvic health-related questions. If no one else will take me seriously, I will begin with me- and learn to start undoing the years of being told to swallow my pain.

So, what can you do? 

1. Surround yourself with support 

It's important that you surround yourself with supportive friends and loved ones. Make sure the people in your life understand what you are going through (and why you may have to bail on plans last minute). 

2. Make yourself a self-care basket

Fill it with things you can do in the house! I keep some easy crafts, magazines, food that can be heated in the microwave, and a Netflix queue at all times. This way on your painful days, you are ready to put yourself first. 

3. Get a second opinion

Or a seventh opinion. Whatever it takes. Listen to your body! It takes the average women with pelvic pain multiple doctors to get the right diagnosis. If it’s available to you, find a specialist that works with chronic pain, women’s health, and reproductive disorders. 

4. Ask questions 

Or bring an advocate to your appointment, take notes, and don’t be bullied into treatments you don’t feel comfortable with.

5. Talk to your insurance or benefits-provider 

Enquire to consider what alternative health treatments are available. Pelvic-floor physiotherapy, massage, naturopathy, osteopathy, and Traditional Chinese Medicine are all approaches that can help manage symptoms. 

6. Take care of your mental health! 

Whatever this means to you…chronic pain can take a toll, and it is important to cope with the stressors, anxiety, and grief that this disease may bring. 

7. Social media 

Facebook and Instagram are full of other badass ladies that have experience and advice to offer in the form of support groups, and inspiration. 

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A post shared by New York Endometriosis Center (@newyorkendometriosis)

8. Support your local Planned Parenthood 

Support PP and local agencies that provide advocacy and medical services to the community in the form of reproductive health and women’s health. They need your love more than ever these days. 

9. Talk to your employer

If you are employed, speak to your human resources representative about getting a medical accommodation in your file.

Photo Source: Matt Crump

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