Endometriosis & its Secrets

Endometriosis is a disease in which endometrial like tissue grows outside the uterus. Living with endometriosis is living with a constant mystery... a secret. You learn as you go about your life unraveling pieces of the mystery. Unearthing truths to a secret. There are a few things I wish I knew sooner. Some of these things may surprise you.

I was unaware of the existence of this disease before my endo pain began. A colleague mentioned it once before when she recognized the symptoms I was experiencing. I was like, "endo...whaaaat?" I had never heard about this condition before and yet shockingly according to the World Health Organization, "Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally."

It took me a while, but with time I learned a lot about this disease. I am still learning everyday. There are also doctors and scientists with a lot of unanswered questions. My hope is that with more research and funding they may find a solution... a cure.

What I wish I knew sooner:

There is no cure.

Endometriosis is controlled with hormone therapy and managed with painkillers, heat therapy and numerous personal preference pain management techniques.

Pregnancy does not cure endometriosis.

I have heard many stories about woman who had endo and after their first laparoscopy were told to fall pregnant. Post partem or some time later their symptoms of endo did not return and lived pretty normal- pain free lives thereafter. This gave me false hope. When I mentioned this to my doctor he, with great sensitivity, explained that pregnancy can relieve endo symptoms, but is not a cure. Everyone is different and perhaps it helped a few woman, but there are also woman who still suffered with endo symptoms after pregnancy.

Do not compare your endo pain to someone else's pain.

Everyone is different. There are different levels of pain experienced and different experiences of the same pain. Pain is subjective and can only be described by the person experiencing it. So do not feel bad that you are not coping as well as someone else. Your endometriosis stage does not determine your level of pain. You may have stage 4 endometriosis, but someone with stage 2 may have more pain than you do. The danger is comparison. These comparisons can make you feel insane and melodramatic. You have every right to feel the way you do. Do not let anyone diminish the essence of your experience.

Your life may never be the same again after diagnosis!

I was naive to think that after my surgery I would be cured or at least have some normalcy back. I was dead wrong. I was only told after surgery that I would be on medication for the rest of my life and need surgery likely once a year depending on my level of pain. I did not have endometriosis in my life plan and it derailed my life in so many different ways. It adds more of a challenge to an already challenging life.

You may experience significantly low energy levels.

So your body is trying to fight endometrial like tissue growing in places it shouldn`t by releasing cytokines otherwise known as the inflammatory toxin. These toxins make your body feel exhausted. Other causes for fatigue include, anemia due to heavy bleeding during menstruation, hypoglycemia and stress. There are so many other reasons for fatigue which may also be unrelated and not listed above, but none-the-less, endo goes hand-in-hand with fatigue.

Never self diagnose pain as endometriosis pain.

Do not get in the habit of saying, 'endo pain'. When you tell your GP or any medical practitioner their go-to is to prescribe you pain medication for endometriosis. They will not investigate further which is to your detriment as the pain may be unrelated to the endometriosis and an indication for some other disease or illness.

List all your symptoms before a doctors visit.

Often, you are distracted by the pain or brain fog and then forget to mention other symptoms that may be relevant. Writing or typing a list of symptoms can really help with providing a appropriate diagnosis.

Endometriosis is not just a pelvic condition.

I was under the impression that endo only grows in the pelvic region around pelvic organs. However, this is not always the case. Endometriosis can migrate to other areas of the body and have been found around the bowels, diaphragm and, in rare cases, the brain (cerebral endometriosis) and lungs(thoracic endometriosis). The endometriosis can offset other conditions and functional issues in the body. You may never know if a symptom is endometriosis or a result of endometriosis.

Pain management and work life balance.

The ramifications of stress with endometriosis is more pain. You have to find an alternative career option that will lessen your stress levels or find ways to better manage stress. Remember if you have endo give yourself some grace and take care of yourself. No one else can do this for you. Sometimes this may mean going for a body massage, spa day, favorite hobby, acupuncture, or buying the Beurer period pain reliever that cost a fortune.

I hope this answers a few questions you may have about endometriosis. If I had known some of the above perhaps I would have been more prepared with a different approach on my plans for the future. It is never a bad thing to hope. My experience is not necessarily yours and so I hope that you will have flare-free day and endo pain free future.