Disclosure: This post is brought to you by SheKnows Media.
I never told you about it but I’m 1 of 10 girls who struggle with endometriosis… I was diagnosed about six years ago but until recently I didn’t feel secure enough to bring this topic on the blog. It’s not like I’m ashamed of having a chronic illness, I just can’t make it through writing a sentence about endo without having my eyes wet. Not because of all the pain that I went through before my endometriosis surgery, but rather because of how misunderstood I felt while trying to figure out what was wrong with me at the moment.
Last week, I attended my first endometriosis awareness event and it empowered me to speak up about my story – because I realized that each and every of you reading this blog might deal with a similar issue. Whether you experience health problems, or you just feel misunderstood and lost, this platform is a safe place where you can share anything that bothers you including such personal things as medical issues. I feel that I can trust you too that’s why I’m sharing this very intimate story with you guys.
… About seven years ago, I started feeling an intense stomach pain that no one was able to diagnose. Over the course of a year, I visited six different doctors and all of them said that that it was a psychosomatic reaction on stress, i.e. I was “imagining” the pain as a way for my body to cope with a stressful situation I was facing at the moment. Some doctors recommended me relaxing more and start drinking herbal teas, while others insisted on meeting a therapist.
I followed the advice, but my pain didn’t go away. Sometimes it was so severe that I had to go to the emergency room in order to find relief. I still remember the nurse at the hospital I was admitted to who said that perhaps I should go on a vacation instead of checking into a hospital for no reason. I also recalled how one my closest friend at the time said that I need to stop complaining and start enjoying life.
I felt very lonely and misunderstood, but I knew that something was wrong with me and I just need to find what caused my pain. I did a research by googling my symptoms and reading medical websites and scheduled a consultation with the top NYC-based OB-GYN that I felt I could trust. It was a very emotional appointment and until this moment I don’t understand how the doctor was able to listen through all my sobbing and crying and figure out what I was talking about.
Contrary to what other doctors did, she recommended to proceed with a diagnostic surgery that might confirm that I was experiencing endometriosis. My family and friends felt that I was crazy going under the knife without any reason. At the end of the day, they believed it was indeed stress and that I should stop being such a hypochondriac. I was doubting my decision too, but at that point I was in constant pain and I couldn’t find any relief, so I had to pull the plug…
I remember the moment when I woke up after a diagnostic procedure turned into four hours long surgery and said, “Am I alive?” My doctor responded, “Yes. And you have to learn how to live with endometriosis.”
While surgery dramatically improved my symptoms, it didn’t treat me completely. And as the doctor said, I had to figure out how to deal with my insane cramps and constant fatigue.
People call endometriosis “a silent killer” because you can’t really tell why an otherwise healthy-looking person is complaining about seemingly non-existent pain. The thing with endo is that sometimes you are in constant pain for weeks and no one and nothing seems to be able to help you. And the only way to properly diagnose the patient is by conducting a surgery under a full anesthesia.
…Having a chronic illness is never fun or convenient. It always feels unfair and you just can’t believe that all that trouble is actually happening to you. And when you are at the peak of your endo symptoms, it feels like a bad dream that you cannot wait to wake up from… Because there is no treatment or a magic pill that can save you. Only you yourself can make it feel tolerable, with self-care rituals and pain management tricks that help to deal with the symptoms, but all these things are just like full-coverage makeup on the scars that no one except you can feel.
What really helps though is emotional support that you can receive from closest people in your life and girls who are dealing with the same issue. I have one #EndoSister who is dealing with the same diagnosis and we continue throwing ideas at each other on what works and what doesn’t with managing your life with endo. But after attending a Wine & Gyn event I mentioned earlier in this post, I suddenly realized that endo is also about the community. If 1 out of 10 women suffers with this disease, she should never feel as miserable and misunderstood as I was while hopelessly googling my symptoms. And if you are one of these girls too, you should know that the Endo sisterhood is here to help.
One of the issues discussed at the event was the importance of endo advocacy. Endometriosis is a common issue for so many girls, but there is not much information available about the issue. And since diagnosis is so difficult to determine, there is a confusion even among medical professionals.
I’m a firm believer that “a squeaky wheel gets the oil” meaning that the more people are talking about the issue, the more endo sisters we can help. Not only emotionally, but practically – with the years of experience other girls dealing with endo have been struggling with. Building endo awareness also creates better conditions for researchers and scientists who are trying to develop drugs and less invasive endo diagnostic procedures.
My only hope is that sooner than later I’ll not need to explain how to spell “endometriosis” as more information will be available to medical professionals. And we, girls from all over the world, would be more educated and prepared to face the symptoms of this silent disease.