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Rachel’s Story (Endometriosis)

Rachel's Story 2 (Endometriosis) I fight Endometriosis. I started my period when I was 10 and had very heavy, painful ones for a long time but never really thought much about it. My mom had always had the same problem so I just assumed it was normal. At age 12, I started having horrible stomach pain to the point I could be walking and suddenly drop to my knees. My mom took me to my pediatrician and she couldn’t find anything so I went on ignoring it till after a few months it went away.

When I was 16 I started having the pains once again. At this point I was finishing up my senior year of high school, my mom had just been through a thyroid storm that had lasted over a year nearly killing her and she was still recovering. For several months I ignored it and played it down to my family. At first it was something I felt I could handle. I figured I would just ignore it and it would go away. It didn’t and swiftly got worse. It got to the point that it would hit me so hard I would be down on my knees. My mom took me back to my pediatrician again who ran test after test on me and couldn’t find anything. For several months I had one test at least every two weeks and ended up in the ER every weekend because the pain would be so bad. My pediatrician couldn’t find anything and ended up saying it was all in my head. I was 17 and in my first semester of college. I felt like I was going crazy because I couldn’t explain how bad the pain was and every test they tried came back clear.

One weekend I was at home babysitting my two younger brothers who were 14 and 3 at the time. I went to the bathroom because I felt sick and before I knew it I was flat on the floor. The pain was the worst it had ever been and I couldn’t move, couldn’t breathe and couldn’t speak. I could hear my brothers in the living room playing and all I could think was God please help me. I had the phone with me and after the pain intensity let up enough that I could move some, I called my mom and sobbed begging her to help me. She was on her way home but still about 10 minutes away. My aunt and uncle lived down the road from us, she called them and they came within the next 5 minutes. When they got there I was still in the bathroom floor not able to move. They got me up into a sitting position and by this time the pain started to ease. They took me to the couch and my mom arrived soon after. She convinced me to go to the hospital because she was worried I might have an ovarian cyst. I went upstairs and as I started to change clothes it hit again. My mom and aunt ended up dressing me and my dad carried me to the car.

Once at the ER the same thing as always happened, they gave me an IV of pain medication and were sending me home. I and my mom were both in tears from the frustration and feeling like no one was listening. One of my nurses (who was actually a guy) talked to my mom after the doctor went out and asked if I had ever been checked by an OBGYN. I hadn’t of course and so the next week I had my first visit with my mom’s OBGYN. She is the doctor that had delivered my youngest brother and she is a complete God sent in my life!

One visit and she told me what was wrong. Endometriosis. She gave me my options, birth control pills or surgery. I decided to try the birth control pills first. I have found I have a VERY hard time with birth control. My body can’t handle them and when I’m on them my family can’t handle me 🙂  So three months after my first visit to her, August 09 I had my first laparoscopy. They removed Endometriosis and several cysts. After that, I was pain free for a year and then in the fall of 2010 the pain came back worse than ever. I had another surgery and went back on birth control. I’ve been through eight different kinds of birth control and I can’t handle any of them for more than a few months.

I go back in a few weeks to decide what to try next. It’s so frustrating sometimes because you feel like no one understands. Endometriosis affects you physically and emotionally. I’ve found that sometimes it takes a lot of strength to get out of bed in the mornings and face the day. The greatest thing is knowing you are NOT alone!! There are other women out there just like you that face the daily battles that no one else can see or understand.

I have a blog if you’d like to follow my progress as I face another surgery and more treatment. .

Keep fighting ladies! We are all in this together! Much love and pain free wishes!

Submitted 9-20-12

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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  1. Cari

    I started my period at age 11 and wasn’t diagnosed until I was 35 years old. 24 years of suffering before I finally saw a doctor that actually listened to me, said he believed I had Endo and did the surgery to diagnose. It is unacceptable that women have to live in pain for so many years before someone listens to them.

  2. Amy

    I had it and I didn’t give into the pain until I was 38.I would go to bed each month and then just try to make it through the day.Then it got so bad that I thought I was dying. I went to work and the pain was so bad that I could not straighten up. One of my friends at work told me to call my dr., they said they couldn’t see me til the next day. I tried to walk and couldn’t, my friend said call them back. I went in and she sent me to an OBGYN who ordered laproscopy. My insides were one big web of endometriosis. I had to make a decision and it was a total hysterectomy. It was a horrible thing to go through but I always toughed it out, until the pain paralyzed me. Hang in there, as long as you have a good dr. then you will be fine. My dr. was and is wonderful and truly my hero. God bless.

    • Laurie Landon

      i am 38 and have been dealing with these band aide docs around here. finally went away and am loaded with cysts and tumors and like labor pains. they are all in uterous and left side. he doesnt know if ovary ones are cancer. i pray not but is ready to do either an ablation, laproascospy(just search) or hysteroscopy where he will search and take. he suspects the intensce pain is endometriotris. i almost died from a Pulmanaory Embolism a massive clot that passed thru my heart & lodged in my lung. told my family i wouldnt survive. but between God and a awesome doc i survived, but forever when i have a surgery i will have to be coumadin. which makes a simple surgery risky. doc said to pic my date. praying about it but very nervous.

  3. Geneva Gernold

    I was given a diagnosis when I was in my 20’s and given BC. I’m in my 40’s now and am sad that I have been childless. It seems so unfair. Your description of the pain matches mine. It’s weird though… I had so many years of being pain free and now the pain has come back again. I don’t know that God is leading me – taunting me with the children and babies of friends.. perhaps. My pain and emotions are all over the place and I’m sad, mad, happy and then, sad again. I just went through an endometrial biopsy and am in the 4th day of recovery. Why does this have to be so cruel to the women it afflicts?

  4. Lissie

    I suffer from endo also I started my period at 10 and spent years in pain. I got diagnosed pretty early though at age 16 I was also diagnosed with polycystic ovarian syndrome and my doctor told me it would be impossible to have children without surgery and fertility treatment. Now at 22 I am 7 months pregnant. I think that things like this make women like us that much stronger.

  5. Britnee

    Wow reading your story, I felt I was reading my own!! I went through the EXACT same thing for years also. Mine started when I was 16 tho. I wasn’t diagnosed until I was 21, and I’m 23 now. I don’t think anyone can understand how painful and frustrating the pain is (especially when no one is helping you) until they have experienced it themselves. I had endometriosis and poly cystic ovarian syndrome (pcos), and was also put on bc at first. I swear it was toxic to my body. I was constantly sick with stomach problems and body aches. I’m now on onglyza (mainly for PCOS) and haven’t had a painful episode in about 8 months! The longest since I was 16. I hope they find something that works well with your body, cause I soo feel for you. Best wishes!

  6. Robin

    My name is Robin,I Have had a long time with Pain also,im now 35 yrs of age and was put on medication to be treated for Endometriosis I have been on this medication for going on 5 mths now,with this medication,im comfortable but it took yrs for these doc’s do put a name to my pain,i have had several test and many many many visits,and it seemed i was getting no where,reading your story,and everyone else’s up there makes me know im not alone.I wish everyone the best of luck .

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