I should mention that I actually do not like the word patient. I dislike it as much as I dislike the word victim. It leads to believing that patients and victims are helpless and powerless. Endo sufferers would be a better term and we are definitely not helpless or powerless. We are fighters, we are strong, we are survivors.
March is Endometriosis Awareness month and as a supporter of this campaign as well as a long time sufferer it is my duty to enlighten all of you fine women (and men) reading this blog post right now about this incurable disease, a disease that continues to affect millions of women and their families.
My story
The word Endometriosis was first mentioned to me when I was 24 and had visited a doctor in the Netherlands where I was living at the time. After suffering serious menstrual discomfort I decided it was time to stop ignoring it and get a check up. The doctor thought it could well be Endo but to be certain a laparoscopy had to be performed. It was and still is the only way to get a clear diagnosis.
My pain was beyond the “normal” menstrual cramps. I didn’t think that pain in my shoulder, my spleen and my back was normal. Neither was the difficulty urinating.
Fast forward to a few years later, I had just moved to St. Maarten and the pain had gotten worst. Numerous visits to gynecologists around the island were useless. They thought I was just another woman exaggerating about a pain all women had to go through. They prescribed me Ibuprofen and aspirins and suggested I go home and relax.
The internet became my physician in those days of hopelessness. I am the first one to tell you not to ever consult the internet about serious medical issues and to leave it to professionals, but when the professionals don’t believe you and indirectly tell you to just “man up” I was left with no choice. On advise of a friend I went to see a fertility doctor who concluded the same as the doctor in the Netherlands all those years back. Finally someone was taking me seriously. She urged me to get an immediate laparoscopy and removal of the endometrial tissues.
To cut a very long story short, I have had three surgeries, was put on Lupron injections twice (to shut down production of certain hormones and thus tricking my body into early menopause), had treatment for ulcers caused by taking so much pain killers and had to tell my then fiancé that a baby was most probably not in our future.
Today I am 41 and still suffering. I’ve been put permanently on birth control pills to avoid menstruation, which is helping but causes terrible mood swings. I have two chocolate cysts, one on each ovary and suffer from chronic pelvic and lower back pain. In my last surgery, Endometrial tissue was removed from my bowels, uterus, ovaries, bladder, spleen and stomach. It was everywhere and it became like toffee, attaching all my organs together. The doctor said it was one of the worst Endo cases he had ever seen and had actually only seen it in text books while in med school. It’s not an achievement I am proud of.
As an Endo sufferer you hear it all. My husband for a while thought I was exaggerating, employers would roll their eyes whenever I mentioned that I was in too much pain to stay at work, friends would not understand why I was canceling again. Endo doesn’t only affect the patient, it affects everyone around her. I won’t even begin to tell you about the psychological effects, the major mood swings and the depression that come with this disorder. And here’s the kicker: Nobody knows where it comes from, what causes it and there is no cure. Menopause helps in most cases, a baby has kept the pains at bay for some but often return after a while and Endo tissues have been found in women with a complete hysterectomy.
Then there are things that others would tell you when you try to explain your monthly struggle. These are my top three all time favorites:
Just take an Advil
Sure. Like that would help. I was popping Advil like you would pop Pringles. Once I popped, I couldn’t stop. I couldn’t eat so I would often take these painkillers on an empty stomach. The funny thing is that it didn’t work. Not really. It would dull it enough to make it possible to fall asleep but the pain would wake me up every 4 hours when it wore off. Codeine helped keep me drugged during my menstrual cycle until the pain was dull enough that I could resume normal tasks like taking a shower.
Just have a baby. It will make it all better.
There is just so many things wrong with this advise and I’ve heard it mostly from doctors. It’s a baby we’re talking about here, not a pair of shoes. Besides, the ugly truth is that Endometriosis and infertility often go hand in hand. Some women get pregnant on their own while others need help with IVF. In my case I don’t think even IVF is an option, and before you all go awwww and feel sorry for me, don’t. I am perfectly fine with having fur babies only rather than human babies and quite enjoy the freedom I have to travel and explore which is where my passion is. A baby was never something I wanted and had known this since the age of 12. It is still quite devastating though when the doctor tells you that the one thing your body was designed to do, it can’t. I would have liked for that to be my decision but Endo took that away from me.
My all time favorite: I get the most terrible cramps too.
Do. Not. DARE. compare your pain to mine. when you’re sitting on the sofa with a hot pad and some Midol, I have been been popping everything from hardcore pain meds and stomach protecters to sometimes injections at the ER. My pain is nothing like the cramps that you feel. I remember one of the only times I felt normal cramps, right after I came off of Lupron. I started laughing hysterically. “So, this is what cramps feel like”, I told my husband. He didn’t get it. Those wonderful days of normal cramps didn’t last long and the Endo soon reared it’s ugly head again. When you’re counting the days till the end of your menstrual cycle, I would be counting the days till that one week in the month that I would have no pain and could lead a normal life.
How can you help that woman in your life with Endo?
- Listen to her.
- Cook (Healthy) for her.
- Help her stay away from processed meat, alcohol, coffee and dairy products.
- Make sure her hot pad is always hot during those terrible pains.
- Force feed her soup or anything her stomach can handle when she’s in too much pain to eat.
- Give her her space but stay close by when the pains are at their worst.
- Stay strong when she goes into full on Bitch mode and don’t strike back. Let her scream, let her curse, let her cry.
- Get informed about the disorder. It will help you understand what she is going through.
Not every Endo sufferer goes through the same thing. The symptoms and the pain varies woman to woman. If you know someone with Endometriosis or you suspect you might have it, please know you are not alone. Get informed, get diagnosed, get that surgery and change your diet to a more vegetarian diet. Believe me, a vegetarian or vegan lifestyle works and is so far the only thing that has really worked for me. Of course it works best in conjunction with yoga and a work out regime, none of which I am actively doing at the moment. I know, shame on me.
Don’t give up. Keep your chin up. Join Endometriosis groups on Facebook or elsewhere online. Endo does not mean the end of your life. It just means you have to adjust a little, that’s all. Know that you can always, always, always count on me, your Endo sister when you need to vent, cry or just need some advice.
