After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis. Two years later, she shares her story with us.
Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didn’t do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.
When I was 14 we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked great and I just stayed on it until a couple of years ago. But over the years my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain.
I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month…I wished they could understand it was real.
At age 31 I went to the doctor about pain in my ovary area & I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify he has been nothing but wonderful, understanding & supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of…nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue & it worked for a year. Except that I kept ending up with multiple infections that added to my annoyance!
I asked to be referred to another doctor. That was the best thing ever. This doctor asked me a bunch of questions id never been asked in relation to my pain. Did i have migraines? For how long? When did the cramps start? Did i always have a heavy period? He asked about my ovary issues. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparascopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds.
When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of stage 4 endometriosis” he’d ever seen. My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed, and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag. But I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.
But first I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis & makes it grow, so he needed to stop the growth before he old attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy. He said that after seeing my insides that he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.
It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.
I’m just finishing my last month of treatment and having my hysterectomy next month & I just pray it all ends there. My biggest fear is still having pain after. Because despite common belief, endometriosis can still come back after a full hysterectomy. There is no cure. This is why I blow my Facebook up with information on this disease, I don’t want ANY WOMAN going through the unnecessary.
Words of Advice for Us: Trust your body and make yourself heard. Don’t settle for the doctors explanation, know yourself.
If you wish to contact Stephany, you may email her.
I want to send a special Thank You out to Stephany for being brave enough to share her personal story, struggle, and victories with us today. Good luck with your upcoming hysterectomy!! Please keep us posted on your progress, and if you need anything before or after your procedure! We are family!! ❤ You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.