Personal Perspective of Endometriosis

I understand that of people that have endometriosis that every person may define this disease differently. Each person might have different symptoms, different areas that hurt, or even different types of pain: sharp, acute, or change throughout the day. I’ll have to say that I wouldn’t wish the pain of endometriosis on my worst enemy, and hope that optimal treatment is found for every individual with this inflammatory disease.

Endometriosis is an inflammatory disease found in tissue within the body. In many cases it is inside the uterine lining, but many women have had diseased tissue removed from other areas in their bodies, not limited to the uterine area.

I was diagnosed with endometriosis after my first son was born. I had a natural delivery with him and a normal one. I hadn’t had any serious issues in the ob/gyn field at all, with the exception of painful periods, but many people reach for their bottles of Midol during menstruation, so I never felt exceptional or out of place. I tried breast-feeding my son, but was unsuccessful and stopped after three months. My menstrual cycle returned quite soon, in my opinion anyway. You’re told when you nurse a young baby that your hormones don’t return to normal as quickly, so you less likely to have a menstrual cycle early. Well, not in my case. After two months, I was in pain and regular menses.

At first my doctor was baffled. He wasn’t sure why I was having pain and prescribed some prescription strength ibuprofen. A few weeks passed and I wasn’t feeling any better. I brought it back up again, but my ob/gyn still questioned my discomfort. He decided to try a different medication, a pain killer. I wasn’t thrilled with the idea of needing to take pain pills to have a decent life, let alone one that left me tired after I was already sleep deprived after just having a baby.

Some weeks passed and I tried to deal with discomfort and tried getting more rest. Soon my periods became painful and I was in unbearable pain, scheduling more frequent doctor’s appointments. I wasn’t happy and I didn’t feel like a healthy mother. My husband didn’t understand my pain, nor did anyone else around me. At this time my doctor tried switching my birth control from a progesterone based pill to the Depo Provera shot. It was also determined that I should undergo some procedures, a cystoscopy to test my bladder for a common disease in women after child-bearing called interstitial cystitis. I also underwent a colonoscopy, which came back fine, and a laparoscopy, where minimal inflammation was found. Because minimal inflammation was found and there wasn’t anything to remove from my body that was diseased at the time, I was left to go home to my pain.

Nothing changed. I was still uncomfortable and unwilling to live in pain every day. I visited my family practitioner who prescribed me a non-habit forming pain killer. One that allowed me to feel half alive trying to take care of my infant, at this time, almost crawling around.

A few months later, I again approached my ob/gyn with the issue of pain management and he decided to try a medication called Lupron. This is used to minimize hormones and helps shrink fibroids and other tumors. Because endometriosis thrives on estrogen in the female reproductive system, by taking Lupron, I felt better. I had no pain while on the medication. This proved to my doctor, that the inflammation was what caused my pain. I was in serious pain at this point. I had a very difficult time as an at-home mother on pain killers every day. I slept as much as possible, when my son slept, and often had my husband put my son to bed at night because sleep was my only refuse from the pain.

I will say that while life seemed to finally take a turn for the better, Lupron had serious side effects, including menopausal side effects and mood swings. I think my family was ready to desert me by the end of the three month trial treatment. When my doctor approached me when the pain started to re-occur, about four months after the shot, I told him no and my reasoning. I also was hoping to have another child.

Actually, I was determined to take control over my life, have the things I wanted, and keep all of my body parts. After reading many books on inflammation and specific to endometriosis, I read that many women have hysterectomies with the hope that this clears their bodies of diseased tissue and cells, and come to find out months later they still have pain. I didn’t want myself to be in the same boat. My doctor had mentioned hysterectomy as a resort and that really scared me.

I chose, even against my husband’s wishes to give myself a specific time-frame to become pregnant before taking more serious action, either going back on the Lupron or finding a surgical resolution.

Luckily, within six months I became pregnant. A side effect of endometriosis is often the inability to become pregnant, or infertility completely. Being young, 20, I didn’t want to sacrifice any organs without having tried everything that I could despite any disease to have another child.

My pregnancy went well. I discussed with my doctor treatment options after my son was born, pretty much knowing that I would be in pain soon after, as I was with my first pregnancy. He said he wouldn’t do anything differently. I, on the other hand, wasn’t keen on living on Lupron, without hormones for the rest of my life. I delved further into books and hoped I found some answers. I found that many women did well on progesterone based birth-control pills or Depo Provera, a shot with progesterone that I had already tried. I was willing to use this as my first choice of treatment.

After my son was born, immediately at my post partum check-up, I was administered my first dose of Depo Provera. I had very bad bleeding, still six weeks after my son was born, and didn’t want to have any additional problems. I hoped the shot would keep my pain at bay. For me, it did. I was on Depo Provera for almost three years. At this time, my doctor recommended I stop taking the shot due to new studies that showed a risk of osteoporosis after two years of taking the shot. While I had already been on the mediation for this long, I was able to take heavy doses of calcium to help restore some bone density. I switched from the Depo Provera to a small dosage of progesterone in a pill form and actually felt even better. I had lost some extra weight that was sitting on my middle, and I felt less tired. I would even go as far as to say, more physically able to handle two children under the age of five.

I know that I was lucky, that things turned out in my favor. I understand many women don’t have the same luck, and that I am still at risk for having pain any day. I still have days of discomfort, but because the medication has kept me from cycling, my body has very little estrogen. The worst I feel is tired, but I exercise and eat well-balanced meals to help me feel more energetic.

The emotions that come with feeling pain or discomfort are horrible. My doctor questioned my mental capabilities and my ability to take care of my child. In the end, so did I, which was why I felt it was imperative to have some better answers and made choices that were risky, but that I needed to make for myself. My emotions ran the full gamut, from depressed to sad, to moody, crying, but never incompetent or unwilling to find answers. Not only did I have these feelings because I was in pain, but because no one listened to me and no one just tried to offer a hand to help. I felt that every move I made was questioned and had no one to really stand by my side.

This is why I share my story and hope that others can find some answers from my experience.