Living with Endometriosis :: You’re Not Alone

endometriosis

According to the Endometriosis Foundation of America, 1 in 10 American women live with endometriosis. It almost takes ten or more years to diagnose properly and is one of the top three causes of female infertility and hysterectomy.

So what is endometriosis? It is a condition when endometrial cells, or uterine lining cells, exist outside of the uterus. It can end up on the fallopian tubes, ovaries, bladder, vagina, and intestines, and other places. When the endometrial tissue is inside the uterus, it thickens and sheds once a month (who doesn’t love a visit from Aunt Flo?). But when you have endometriosis, there is no exit for that tissue, and it causes pelvic pain.

Here is my story.

I was in high school when around the time of my period, I would get severe cramps and migraines. Such bad cramps that waves of pain racked my body and all I could do was curl up at my desk, bringing my feet to my chin, and gently rock back and forth. Taking 4 ibuprofen at a time, every 4 hours did nothing to touch the pain. I would come home from school and sleep for hours, because of the sheer pain. But how was I to know that this wasn’t normal? I suffered in complete ignorance for so many years and it wasn’t until the summer after my Junior year of college that things took a turn for the worse and I finally got insight into why I was in so much pain. 

It was summertime and I was walking to a local bar with my roommates when I doubled over in pain on the sidewalk and could only see black. It felt like someone was stabbing my abdomen with a knife. I was sweating profusely. I sat there, crouched over in a ball, not knowing what to do. That night, I left my roommates and I walked to the ER near campus, hoping to get some pain relief.  In the ER, I was introduced to the pelvic ultrasound (sidebar: its best to explain to a mildly hysterical 23 year old what you plan on doing before you whip out a condom and a giant wand). The doctor explained that they saw several large ovarian cysts and that the pain I was experiencing was likely from the cysts bursting. They suggested that I follow up with my gynecologist in a few cycles if the pain continued, so that it could be properly diagnosed.

I walked out of there really not knowing what any of that meant, but hey — Vicodin. So I was feeling ok.

After a few months of pain and no relief in sight, my gyn scheduled laparoscopic surgery to see what was going on. It was January of 1996. Once I was in recovery, she informed me that I had endometriosis and that to ease the pain I was experiencing, she excised the lesions and performed a D&C as well, so I should be free from the crippling pain for awhile. She started me on progesterone hormone therapy with hopes that because of my age and the severity of my case (mine was a higher stage II), that it would work and we wouldn’t have to rely on the harsher hormones that have many more negative side effects.

It worked for many years and I was able to manage the pain that I had, except that I still suffered from debilitating hormonal migraines. Often times, I worried that it would affect my job performance because, for one week of each month, I couldn’t get out of bed in the morning until my prescription meds kicked in. But I carried on, thinking this was my new normal.

Did endometriosis affect my ability to get pregnant? Well, yes and no. When my husband and I decided to throw caution to the wind, it was ONE week after going off oral contraceptives that I got pregnant. My OB explained that sometimes, oral contraceptives force ovulation when you quit taking them abruptly. So naturally, we thought it would be just as easy with round two. Our first baby was so delightful and easy and wonderful, so we decided to go for close in age. But then months went by, all while tracking basal body temperature and peeing on ovulation sticks, to only discover that I wasn’t ovulating. Once again, I made good friends with that pelvic ultrasound wand and it was decided that we would stimulate ovulation with Clomid (Sure. Why not. The chance of multiples is generally less than 10% on Clomid. Ahem.)

Years went by and things once again progressed on the endo front. A decade or so later, after I was done having kids, my periods were back with a vengeance (and I’ll spare you those details and leave it at that. Let’s just say it involved a super plus every 30 minutes while taking round the clock ibuprofin). After extensive talks with my gyn, she suggested that I get an endometrial ablation. Her reasoning was twofold. The AE would, theoretically, stop the intense heavy bleeding for up to 10 years. In addition to that, she had research that had shown that (and I am paraphrasing from memory) if we could stop the period, then the bleeding outside the uterus would stop as well, which meant the fibroids would stop growing. Hopefully. Since no one really knows what causes endometriosis, this was (in my eyes) a stab in the dark. But in my 30’s, I felt way too young to be getting a hysterectomy. With the AE, if it works, it would give me 10 years and I would be closer to menopause and more able to make a life-altering decision like that should I need to. So on June 6 of 2011, I had an endometrial ablation performed, as well as all remaining fibroids excised, with the hopes of being pain and blood free through my late 40’s.  And so far, so good.

Unfortunately, not everyone has a happy ending to their story.  I know people and I’ve read stories of people who have multiple excisions, only to have their uterus and fallopian tubes removed at a young age. People who have tried Lupron therapy and endured awful side effects. People who bleed rectally because the adhesions are wrapped around their rectum. Living and surviving and thriving with a medical condition is one thing. But doing those things with something that is still relatively unknown and untreatable? That’s another. Unlike other conditions, its not a visible illness and can often leave you feeling alienated. But ladies – you are not alone.  The Endometriosis Foundation of America  and Endometriosis.org are both great resources, as is sharing your story. 

My story isn’t one that necessarily provides the “Top 5 Tips for Those Struggling With Endometriosis” or anything similar, but I do hope that it is a story of hope for others out there. I know that endometriosis altered my life and has shaped who I am, but it no longer defines me. 

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