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Rachel’s Story (Endometriosis)

Rachel's Story (Endometriosis) LRI suppose a good place to start is the beginning. I started my period on January tenth (yes I remember the date, don’t you?) when I was 13 years old. It was painful and heavy but it didn’t last long. I thought it would be easy but I was wrong. The periods got heavier and longer and more painful. I would be up all night lying on the bathroom floor just to feel the cold tile because I’d be burning up. The cramps were so severe I couldn’t stand sometimes and the periods so heavy I couldn’t use tampons, they would fill up in ten-fifteen minutes.

I kept getting worse, I remember when it hit me at my friend’s house, pain so bad I couldn’t stand straight and I needed help to walk. I rolled on the bed and moaned and cried. I was like this for two days and I was taken to youth care. A cat scan was scheduled and I had to drink some nasty fruity crap that made me puke (yes, that gross). The scan showed nothing except that I was impacted with fecal matter (gross again). I recently learned that endo causes severe constipation. So I took fiber and the meds that, you know …. make you go. Soon the pain subsided and I went on with life. My periods kept getting worse and it wasn’t my colon like my pediatrician was thinking and she didn’t know what else to do.

So I went to the GYNO, he was the same one my mom used and he in fact delivered me when I was born. Just to let you know, my mom had endo, too (hysterectomy in 91), so he was a aware of “family history”. I remember him looking at my mom and saying “You know what’s wrong, right?” and my mom looked disappointed and crushed and said “Yes I do”. I apparently was the only one out of the loop. So my doctor explained what was going on……I heard foreign and polyp and a bunch of other words and the first thing I thought was “So it’s like tumors… cancer????” He said it won’t kill me but it will be a fight, and it has been a battle of battles I’ll tell you. My mother said “It isn’t life threatening (usually), but it is life changing!” I agree whole-heartedly, my life has been changed forever. Now to set it straight I have not been diagnosed at this point in the story – that comes much later. My GYNO put me on every BC medication he could think of, I have even been on Premerin.

Nothing worked, my periods got heavier, my pain got worse, I was still sick. But the worse part of it all is my periods got closer together. I would have one two weeks on, one week off. I skipped two solid months then had a period for most of a month. I had no schedule, and no rest. The pain was getting more than I could bare and was put on Tramadol. Still that barely took the edge off, and I would lie in bed. Thankfully, I was home schooled at 13 because of bullying in my public school. I just sort of dealt with it until I was 18. Summer of 2008 was torture, the pain excorticating and the illness kept me from eating normally. I lived on pepto bismal and slept for an Alaska trip that lasted 4 months.

When we got home I went back to my GYNO this time a woman (mine couldn’t see me and a woman was easier…. I thought). She felt I needed a laparoscopy, so a date was scheduled October 13 of 2008. It was a scary thing but I just new it would make me better and it did to an extent. My new GYNO said she found a burst chocolate cyst and scar tissue form appendicitis. She said the cyst must have burst over the summer at some point but because of the massive scar tissue my body was unable to absorb the fluid and it sat in my abdomen and festered which is what made me ill. The scar tissue had my intestines, bladder, ovaries and bowel tied together in knots and glued to my abdominal wall which accounted for my trouble with urination and bowel movement. But she said there were no signs of endo. She cleaned it all out and it was supposed to make me better…and did some.

The old pain was gone but the underlying pain reared its ugly head. So the doctors went back to my colon thinking it might be colitis, but the diet didn’t work and the stomach meds didn’t either. I got rid of the female doctor because she said there was nothing she could do for me and I went back to my original. He is amazing I might add. He suggested I try Lupron therapy in 2009. Not knowing what it is, I got afraid. I did research and talked to a friend who I found out has endo too and took Lupron. She said go for it so I did. The first day did not work out so well. Cramps started, they got worse… and worse… until I was on the couch screaming unable to move. My parents got me in the truck and rushed me back to town which is 30 minutes away; we got there a lot faster than that. The first thing the doctor said when he saw me was “Give me x amount ccs of Demerol and Phenergan stat!” I am scared to death of needles but this one I didn’t even feel. I was in so much pain I would have taken an epidural. Later the Dr. said I was put in false labor by the Lupron and sometimes it happens (thanks for the heads up).

I was on the Lupron for 12 months until I was taken off. Through all the symptoms it is the best thing I have done. My period has come back this November and it is on schedule for the first time. I still have pain but not like before. I would recommend Lupron to anyone. But I won’t do it again – lol. I can handle the symptoms, I just don’t want to. When my endo comes back I will try other methods until something works again. Oh and because the Lupron helped me, my GYNO said that is a positive diagnosis of Endometriosis. However… that I am off of the Lupron it seems I am going back to where I was. I am beginning to vomit from the sheer pain and unrest. I pray for one day, that’s all I want, one day with out pain.

Submitted 5-17-11

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. franchesca

    wow. all i can say.

  2. Pat

    Rachel ~

    Oh how I can relate – my endo probably reared at about 13 and I suffered terribly every month. However I WAS NOT home schooled, which made life very hard.

    I also had mine LONG before you were born – so all of the new drugs and treatments did not exist when I finally had to seek medical help for the first time in 1980. I had surgery to SCRAPE my endo out of my abdominal cavity, and was put on the best medication for the day. IT WAS HEAVEN – because for 5 months I had no period instead of one that could last for 6 weeks.

    Two weeks after I stopped taking my medication, I started hemorrhaging again. My Dr. told me to go get PREGNANT – can you believe that one? (I had a little boy who was just a little over a year old). Within another month I had a new Dr. and I got out of the hospital on my son’s 2nd Birthday from having to have a COMPLETE hysterectomy.

    I was NOT yet 22 years old.

    and yes – I was pre-cancerous.

    Best of luck to you.

  3. Emily

    Hey Rachel,

    First let me tell you that you are not alone. I was VERY happy to read that you live in Georgia (I’m a Peach myself). I have also done Lupron- I quit after 2 months because I could not handle the side effects. I’ve has surgeries and while I woke up from them feeling better, I returned to feeling bad again.

    Then the best thing that ever happened to me happened this year- I won’t give you my entire story so to make it short, after having 2 doctors basically accuse me of just being a drug seeker, I was finally told about The Center for Endometriosis Care. It is in Atlanta- I’m not sure if you live anywhere close by there, but people come from around the world to see these doctors. I was hesitant at first because my surgery was scheduled before I had even met the doctor, but in my pre-op he told me that after suffering for so long (I am 28 now), this surgery would give me a 98% chance of actually being CURED. The surgery wasn’t the quickest recovery, but it has been 4 months now and I am feeling better than I ever have in my life.

    You are extremely fortunate to be so young- all of the doctors I saw just told me to have a baby and then get a hysterectomy… because it’s just that easy- and to live near enough to see these doctors. Look up The Center for Endometriosis Care in Atlanta online. See them. And to throw this out there- I got my bill after insurance paid there part and nearly had a heart attack- when I asked to make a payment plan they told me I had a $50 balance. They wrote it off. I had to pay a little up front, but it was worth every penny and more.

    Good luck to Rachel. I truly hope that you are able to get an early start on getting your life back.

  4. Faith

    Hello. I have been on Lupron for over two years, which if u ask me, is completely rediculous. I am so glad to hear it worked for you. It helps take some of the edge off my pain but doesnt work enough for me to want to deal with the symptoms. However, I am now coming off it and am in excruciating pain, so I guess it helped more than I thought. But I would still rather not be on it cuz I am a complete you-know-what on it. But it makes me super happy to hear of someone who “liked it” I suppose would be the closest word to use (:

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