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Stephanie’s Story (Endometriosis)

Yellow RibbonMy name is Stephanie, and I am 29 years old and found out 2 years ago I have endometriosis. From the time I started my first period at 12 I always had really bad cramps and bleeding, but my mom said everybody is different and that’s normal so I never thought of it again. Around my teen years, I started to feel lower back pain and a stomach pain that was worse than cramps but never saw a doctor for it.

Once I got to be 21, I couldn’t take the back pain any longer and decided to see a doctor for it. I started with a chiropractor for 6 months. It helped somewhat, so then I went to a family doctor, and they sent me in for x-rays that all showed up completely fine. So the next step was a physical therapist. I saw them for 6 months before I could get an MRI done per insurance requirements, which I think is not right. What are you healing with physical therapy if you don’t know what the problem is?

The MRI showed nothing wrong, so then they sent me to a pain management specialist who could not find a problem. Meanwhile all this time they had me trying different medications such as steroids, Naproxen, Meloxicam, and Lidoderm patches. Nothing worked, and it kept getting worse. Then the doctor wanted to try steroid injections, which didn’t work either. In the middle of all this, I couldn’t take the lower abdominal pain. It was so bad I was screaming, so I went to the hospital. They did a urine test to see if it was a bladder infection or UTI. That came back negative, so they gave me a CAT scan which came back with nothing wrong. They literally came back and said, “We don’t know what’s wrong. It’s just side pain or something,” and gave me UTI pills and a prescription for them. Why would you give someone pills for something they don’t have? Needless to say, I didn’t take them, and it was a big waste of money and of 4 hours in the ER.

Finally, I talked to a new in-law, and she recommended I talk to my gyno about endometriosis. I had been going there frequently anyway, trying to get pregnant. When I told him my other problems, he was willing to go ahead with the laparoscopy to check for me. Well, he did the surgery and found my endo and told me it was in the worst possible place and was actually touching a nerve that was causing my back pain. While he was in there, he said I had a cyst he removed and a fully clogged tube and a partial clog in the other. Now I was happy because finally I had an answer for my pain. Then my doctor said I should become pregnant very soon and I was good to go. That sounded great, only did it not happen. Nothing happened. I went back every other month, and he gave me one story after another, then finally blamed my husband and had him get checked twice. He couldn’t read the results, so he made him go to a specialist, and the specialist said nothing was wrong with him. Then I went back to this doctor, and he changed his story. So I changed doctors.

I am still battling infertility, and I have been on Clomid and Profasi for 3 months now with my new doctor, but it hasn’t worked. Now I am being sent to a fertility specialist. What doctors don’t seem to care about is the cost of infertility, and they have no sympathy for your pain and let-downs month after month. They just say, well, maybe next month, and I am tired of hearing that. I have been trying for 3 years. I don’t want to have children when I am too old to play with them. Endo is a fight and a hard one to beat, but this is my story, and I hope that someday there is a cure for this! But the thing I hope for most is a way to find out if you have it sooner rather than later, especially for women who wish to have children, because I have read most people find out when they are 27.  Not everyone wants to have children when they are older. Some may want to start in their 20’s like me. I found out at 27 and am now going on 30 and nothing has happened.

Submitted 08/28/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Dawn

    I was told the same at 15. And said there would be very little chance of ever having a child. They would never give pain pills because they wanted to know when my ovaries would blow, After nine surgeries for this I had a beautiful baby girl. Today I am also the proud grandma of her children. I guess what I am saying is hang in there because it will happen. In my day they told me it was all in my head until O would hemmorage. They have come a long way with this you just need to find the right doctor. Good luck!! Sending prayers to you for a pain free year.

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