Well this one's pretty simple. There needs to be more endometriosis awareness.
When I was diagnosed with endometriosis, the only reason I had even heard of the disease before was because a close friend of mine had given me Susan Evans's
pelvic pain and endometriosis book when I complained to her about my pain. I had had symptoms for ten years, and spent at least 6 years trying to get doctors to take me seriously. Many doctors told me that they could do nothing for me and that I just needed to live with it, and I never heard the word "endometriosis" come out of a doctor's mouth when I told them about my pain. Just before I went into my laparoscopy, my surgeon told me that it was probably "just PMS", but that he would continue with the surgery if I really wanted it. Even my dad was doubting me then. That was hard, but I'm so glad that I went through with it and at least I have a name now.
After I had surgery, I discovered that not only one, but two of my aunts had the disease, and some of my cousins had it as well. Although my dad is a doctor, he never knew that his sisters had had hysterectomies because of the pain. This is something that families need to talk about. If I had been treated earlier, I may not have gotten to the extent of pain and fatigue that I was in before my operation, and I may have known more about better treatments and gotten an excisional surgery instead of diathermy (excisional surgery is much more effective).
I heard recently that 30 years ago, breast cancer was a dirty word. Like endometriosis, it was hidden away, swept under the rug, whispered about. Now look at breast cancer awareness - you can't get away from it! You can pretty much buy anything in pink to support breast cancer - straighteners, lunch bags, you name it. However, when you mention endometriosis you get a lot of stunned faces who don't know what on earth you are talking about, and when you explain it further, sometimes you even get a few "ews" and "I didn't need to know that!" I have to say, when you have just been diagnosed with something that you will most likely have to deal with for the rest of your life, that is not what you want to hear, and just makes you feel worse.
Before I had surgery, I told another one of my close friends of my pain, and she tried to tell me that my pain was normal. It turns out that she has other gynecological conditions that cause her pain, and she is now undergoing treatment (thankfully!), but the fact that a young woman would think that it is just a woman's lot in life to have pain is ridiculous. If one of your friends told you that they had discovered a lump in their breast, would you tell them that it was normal? No! You would tell them to go to a doctor to get it checked out. It should be that way with pelvic pain.
How is it that a disease that affects 10% of the female population (
roughly 1% more of the population is affected by endometriosis than diabetes) be so unspoken of? It's not contagious, and the people who have it did nothing wrong to end up with it. It's debilitating and can wreak havoc on lives, through mental and physical health, particularly because it's something women generally suffer silently.
So, if you have endometriosis, speak up! Tell your family and your friends. When you need to call in sick to work, don't pretend that you are sick for another reason. You have done nothing wrong, there is nothing gross about your disease. There is a reason for your pain, and it has a name. Society needs to know what we go through so that there is better understanding, less people living in pain, more research done, and possibly even a cure!
If you know someone with bad period pain or other symptoms of endometriosis, don't tell them to get over it. Tell them to go to a doctor and push for help. Give them your support.
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