Living with Endometriosis

For anyone who doesn't know what endometriosis is, let me explain. Endometriosis is a disease that effects 11% of women in the world. It can be a mildly painful to an extremely painful disorder. Having it means the tissue that normally lines the inside of your uterus grows outside your uterus; it can grow on your other organs as well. There is no cure for it! Endometriosis usually just affects your ovaries, fallopian tubes, and the tissue lining your pelvis. In some cases, it may spread beyond pelvic organs. The tissue that grows inside your uterus continues to act as it normally would; it thickens, breaks down, and bleeds with each menstrual cycle. But the tissue that grows outside has no way to exit your body. This causes it to become trapped. Endometriosis can involve the ovaries, causing cysts called endometriomas. Surrounding tissues become irritated, eventually developing scar tissue. That can cause pelvic tissues and organs to stick to each other.

There are 3 ways to find out if you have endometriosis: ultrasound, pelvic exam, and exploratory surgery. I saw five different doctors that told me it was just my period. They had an ultrasound done, found nothing... They did many pelvic exams, still found nothing. Then my son's doctor referred me to my new OBGYN. He thought exploratory surgery was the best option. He found that I have a very extreme case of endometriosis. Finally relief, right? Yeah, I thought so too.

Endometriosis can have many different symptoms including pain during sex, pain during your period (more than normal pain), infertility, pain when using the bathroom, fatigue, diarrhea, constipation, bloating, bleeding more than normal during your period, or nausea. You never fully know exactly why you are having these symptoms. In extreme cases, you feel as if there is too much pressure, and you may have a longer, heavy period also.

There are treatments, but every person can respond differently to the endometriosis. The treatments for endometriosis are hormone therapy, pain medication, conservative surgery, assisted reproductive technologies, or a hysterectomy. I have tried all but the assisted reproductive technologies and a hysterectomy (I am scheduled to discuss a hysterectomy).

Lets talk about these treatments:

Hormone therapy: Birth control or medically-induced false menopause can temporarily stop the endometriosis from spreading and developing. But after being on the hormones for a few months, your body gets used to it to so they can no longer help. My doctor had me try four different hormone injections (non-birth control), five different types of birth controls, and two different induced menopause hormones. False/induced menopause worked the best, and the longest, but after seven months it stopped working. All symptoms returned worse than before.

Pain medication: The first couple days it was fine; no, it was great. But just like the hormones, your body gets used to it. It no longer helps after awhile. Being on pain medication every day is not fun. Even if you feel better for a few hours, you wake up in the middle of the night feeling as if you are being stabbed. Like the inside of your body is fighting itself. I remember when I first started taking the pain medication. There was NO pain. I was out of it, I couldn't think straight, and I slept a lot. I lost my appetite. I tried eight different pain medications. I started with low doses, then ended up on the highest dose I could be on. Then I begged my doctor to try something else.

Conservative surgery: This was the worst by far. To summarize the surgery, they cauterized all of the endometriosis tissue. Not only did I have two hour surgery, and two day stay at the hospital. But I also had three weeks on bedrest I was only allowed to go to pee and shower WITH assistance. Then, six weeks of half-bedrest where I was allowed to walk around for up to ONE hour a day (not that I really felt like moving at all), lift no more than half a pound, and go the bathroom without assistance. I was still not allowed to shower on my own, though. I could not bend or sit on my own for five weeks after the surgery. It hurt to move, to cough, to eat, to use the bathroom, to stand, to sleep—everything, and I mean EVERYTHING, was the most painful thing you could imagine. If I drank more than two ounces there was too much pressure on my uterus and surrounding areas that had been affected by endometriosis. After the recovery, though, I felt great. I had no pain for almost six months. No pain, no pain medications, no trips to the doctor every month; my periods weren't bad. I was shocked. But like I stated before, there is NO CURE for endometriosis, so the symptoms came back, though slower than being on hormones, and not as painful at first.

The daily pain without treatment? Well, I guess the easiest thing to compare it to is how it feels after you give birth. Your period? You feel as if you are in labor. There are days you can't stand. The pain is too much. Endometriosis can be genetic, or be caused by backflow (as called retrograde menstruation, meaning: menstrual blood flows back through the fallopian tubes and into the pelvic cavity instead of out of the body), transformation of peritoneal cells (hormones and/or immune factors transform cells that line the inner side of your abdomen), embryonic cell transformation (estrogen transforms embryonic cells during puberty), surgical scars (usually due to a hysterectomy or C-section causes abnormal cells to form), immune system disorder, and labor.

If you do not live with endometriosis, or know someone suffering from it, do not say it is just a period. It never goes away. There is no cure, only short-term relief. Many women do not know they have endometriosis. They believe it's just their period. They fight daily with their own body, and the doctors, to find the best short-term fix for a long-term fight.