I don’t like sharing personal things like this, but I am doing so in the hopes that it will help someone. Unbeknownst to me, I have been dealing with this condition since I was 13 and wasn’t properly diagnosed until I was 26.
That was AFTER I was scheduled to get a full hysterectomy at 19, while a student in Toronto, although there is no evidence that shows that to be effective.
I am not writing this post to do an expert medical examination of this incurable disease that affects 1 in 1o women- there is enough of that (although if you need advice sorting through all the BS out there reach out because there is plenty of it). I simply want to tell women to trust their instincts, practice self-care and don’t give up. These are the things that saved me.
Trust your instinct:
After years of feeling like a test bunny for doctors in some of the best “hospital cities” of the world, including Boston and Toronto, I had enough. Not only was I not getting better, but I felt like their incessant toying with my hormones was making me worse. At one point, after a series of progesterone shots, I bled for 3 months straight- profusely. There is of course the excruciating pain. By the way- NEWSFLASH it is NOT normal to have painful periods -that is a BIG MYTH that leaves many women undiagnosed for years! The fact that they keep going back to doctors means that deep inside they know that the diagnosis they have been given is wrong.
It is very difficult to push back against the “expertise” and to disrupt the power-balance between doctor and patient and claim your space.
But facts are that you ARE the only expert when it comes to your own body, doctors still know very little about this disease and treatment methods remain controversial and lacking consensus amongst practitioners.
The only reason I can stand confident in my position regarding my health is because for years, and with devastating results, I tried it “their” way. I did so blindly and with complete trust.
Trusting your instincts means getting into arguments with doctors, looking for a second opinion, walking out of their
office when you don’t feel heard or respected, weighing conflicting expert opinions, fighting with close relatives that out of love for you will say things like “Oh, you think you know better than the doctors!” and most of all resisting the pressure to just “give in” which often translates into a lonely and isolating road.
All that “fight” described above comes at a very heavy price. This is on top of the already emotional aspect of endometriosis which includes depression, chronic fatigue,nausea, anxiety and feelings of something being “wrong” with you as a woman, on a fundamental level. Facing all of that, you may not think that you are up to take on another battle. I promise you, that you are. The fact that you made it so far and even reading this is a sign you are searching for a glimmer of hope, is proof of how strong you are.
No one can tell you what self-care looks like for you- for some it is writing, for others crying with abandon. It is whatever makes YOU feel better. Unfortunately, I have very self- destructive tendencies and for years I confused dulling the pain with substances such as alcohol (which made the disease worse) and heavy smoking as “self-care” when it was anything but. What set me off on my journey towards self-compassion and care was reading Dr. John Lee’s books. I highly recommend them to anyone dealing with any type of endocrinological or hormonal issues.
What had the biggest effect on my condition was making the life style changes needed based on his guidance. It is very difficult at a young age to exert such self-discipline and I wish there was a short cut I could offer but there isn’t.
I think that is the allure of modern medicine, of the invasive surgery road; that with a few snips you get your life back. And you might. But not for long.
This is a recurring, progressive disease. All you are doing with surgery is getting temporary relief (at a price). You must accept that your life choices MUST change. When you think of a diet, don’t just think of food. A Diet is anything that “feeds” you, that includes what you watch, who you are around, what you do etc. Inevitably, it means letting go of toxicity in your life- which often means cutting certain people off as well.
I self-isolated. When I had my first surgery which revealed a 6cm tumor (which they thought was a cyst, and which came back 3 months after the surgery and has not taken over my ovary entirely), I didn’t even tell my family. I went at it alone, with a few friends taking turns coming to my house to take care of me. At the time it was the right thing for me to do. I already felt weak and adding more people and drawing more attention to it would have just made me feel more vulnerable. It was a self-defense mechanism, and I am honoring that fully. You don’t owe anyone anything.
We isolate in other ways as well. Since there is no outwardly visible signs and a misconception that you are bitching about a “painful period” you tend not to take the time when needed from work, just adding more stress to your body. Society in general is pretty bad when it comes to allowing “feels” so you must carve out the space for yourself. Most of all practice self-compassion and self-love. Give yourself the space to grieve without wallowing in self-pity. Don’t become too self-centered. Remember that it is also stressful for those who are closest to you such as your partner. Encourage them to also share and seek counseling if fertility is an issue.
Don’t give up
There will be moments when you will have self-doubt, when you will want to give up and when even hoping for a normal future, or dreaming of having children will seem out of your reach. The reality is that for some of us it will be. So what do I mean when I say don’t give up? How can you both accept reality and keep fighting?
Fighting doesn’t just mean fighting the physical ailment; to me it means not letting it rob and siphon the joy out of the rest of your life.
You do so by remembering and honoring the whole of you. You are not a sum of your organs, and your worth is not equated by your ability to reproduce. As banal as it may sound, there IS more to life than that. It is easy for this disease to become the singular focus of your existence, but you can’t let it. I am lucky that I LOVE my work- I get to contribute something meaningful to society- to be part of something greater than myself. I have incredible friends, I have traveled the world, and have a very strong faith that God is the Best of planners. You fight by cultivating gratefulness in your heart. When the pain and the injustice of this illness makes you feel like you have nothing to be thankful for, you can learn to dig deeper and to see just how blessed you are and how much you have to offer.
*For Pain: I was prescribed Vicodin as my pain was so bad. Drugs like Vicodin leave you totally incapable to function normally. It seemed to me absurd that the cure for being rendered incapacitated by pain, was being incapacitated by pain killers. I found a Bulgarian drug with no such side effects called Spasmalgon and it is the only thing that has helped me and allowed me to remain fully functional.
**Thanks to the BBC for publishing this story and inspiring me to share my own.