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Kaitlyn’s Story (Endometriosis)

Kaitlyn's Story (Endo)Ever since my first period at 12 years old, I have had an awful experience. It began with awful cramps and then progressed to back pain. My first trip to the doctor was disheartening as I was told my periods would regulate themselves. After two years of cramps and three weeks of bleeding at a time my doctor finally decided to put me on birth control. I was also diagnosed with migraines with an aura, so I am unable to have any estrogen contraceptive methods.

I decided to begin depo provera shots immediately. I was told after a year or two of shots, my period should have regulated itself. Although the shots completely ridded me of bleeding with my periods, I still experienced some cramping. Two years came and went and every time I tried to come off of the shot, my periods would last at least three weeks and I could not afford to miss work or school. By this time I was 16 and visited an ob/gyn.

She told me that bleeding for three weeks was worse than staying on the shots. I was told to continue the treatments with the shots. Against my will, I continued the shot. I felt like I had no other options. My bone density was lessening and my pain was masked slightly by the shot. Eventually, I tried to come off the shot but the symptoms began to get worse. I would not only bleed for three weeks but have cramps a whole week before along with back pain and diarrhea on my first several days of my periods. Everyone told me this was normal. This was just part of being a woman. I believed that until about four weeks ago.

While on the shot I had severe cramps for two weeks requiring narcotics. I had severe back pain where I couldn’t stand up, nausea, and pain in my hip joint on the side where my pelvic pain was severe. After two ER trips, I found myself with no answers, and doctors making me feel like I was crazy. I visited an ob/gyn like the ER doctors suggested. She told me she didn’t know what it was. After ten minutes of speaking to me she told me to schedule a one week follow up appointment. I saw her again one week later. At this point, my period had begun and I had experienced six episodes of diarrhea within three hours. I was also anemic, needing iron pills to keep my energy level normal. She told me that everything seemed to be working normally and all of the test the doctors conducted came back negative.

So within three weeks I had four pelvic exams, STD screening, multiple pregnancy tests, two trans vaginal ultrasounds, two CT scans, and still no answers. I decided that this was not normal, so after speaking to my sister in law, I set up an appointment with her ob/gyn. Today I had that appointment, and today, at 20 years old, I was diagnosed with endometriosis. I am now in the process of finding the right treatment plan. Unfortunately, my bone density has decreased quite a bit causing my teeth to begin chipping, so I am having to switch to a lower dose of the hormone. I am going in a few weeks to have Nexplanon implanted in my arm. The doctor is skeptical if this will work because this is a lower dose than the depo, but I cannot afford anymore bone density loss. Whenever this treatment fails to relieve my symptoms, I will be having surgery.

My advice to young girls is that if you are having severe problems with your period, please do not accept the excuses of doctors who do not want to investigate the issues. The doctor I saw this morning said I was a textbook case. This was before she even knew it was in my family history. PUSH FOR ANSWERS LADIES! Although I’m disappointed there is currently no cure for me, at least I know what is going on, and can take steps now to fight it.


“The Lord is good, a strong hold in the day of trouble; and He knoweth them that trust Him” (Nahum 1:7)
“Casting all your care upon Him, for He careth for you.” (1 Peter 5:7)

North Carolina
Submitted 04/14/2014

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. Robin

    Kaitlyn I am so sorry for what you are going through. I went through the same thing you did but the drugs available to you were not available to me back then. I ended up with a blocked tube on one side and only had my period maybe five times a year but thought I was dying when I did. My husband and I were told I would never be able to get pregnant. By the grace of God I did end up pregnant (I did miscarry once) after six years of trying. The endometriosis was back immediately. After 13 months, I was able to get pregnant again and the endometriosis was back immediately again. I was forced to have a complete hysterectomy. The endometriosis had attached to my colon and everywhere it could. I have had to have surgery to remove adhesions wrapped around my colon and actually now need surgery again. I am now 53. Please talk to you MD about Reclast for your bone density. I also had this issue. It did wonders for my mine. It is IV but I was almost to Osteoporosis. Again, I am so sorry for what you are going through.

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