Thursday, January 20, 2011

The beginning of the end...ometriosis

It is weird how it seems to take forever for doctors to actually pursue Endometriosis. I am currently 25, but started dealing with this when I was 20, well earlier than that, but I didn't know it. It was winter time when I started having problems. I was shoveling a lot that winter (I worked at a camp and we had lots of snow that 3 of us just couldn't keep up with). Well the cold and the labor triggered my Asthma and I was not doing well with my breathing. Well this caused a lot of coughing, coughing so hard that I was throwing up and my abdomen was hurting a lot. I ended up in ER a lot, but after they were really not helping I stopped going and was just praying for the end of winter. After awhile I realized that I was still in pain and still throwing up, even though I was breathing just fine. So after I had lost about 20 pounds in about a week in a half I decided I needed to get checked out. This was the worst experience I had, because I had some pretty mean doctors. I also had nobody to go with me. My father and his wife were not on speaking terms with me, and I was single at that time. The reason it was a bad experience though is because the doctors I saw were mean and accused me of lying or being bulimic. I was told I was lying when I told them I wasn't having sex. It was all a mess, but finally I found a doctor who realized I was losing weight way too rapidly (at this point I could barely hold down liquids so life was pretty bad). Well they sent me off with acid reflux medicines and to a gastrointestinal doctor. This doctor was great, he asked a lot of detailed questions and even before he started running any test he said it sounded like I had endometriosis. He ran a bunch of test though just to make sure and sent me off to an OB-GYN. The first one I saw really didn't seem to want to be bothered with me, and told me that I didn't have symptoms to prove I had endometriosis. He was convince that the vomiting was from something different, because no case that he ever dealt with ever had sickness (even though I was told over and over again, no 2 cases are ever alike). He gave me birth control pills and sent me on my way. These did nothing for me, well I think they made me worse, finally after I came back to the doctor because with the BC I had been bleeding non stop for over 3 months and I had gone from a size 16 to a size 9 in small amount of time. (now I did start off at a large size, but I have rather large hips and so am not a small person by nature. I had not been a size 9 since I was in 6th grade, and that was with me involved daily in dance until my senior year of high school). That meant a size 9 for me at the time was bad. I had bones sticking out and I looked like I was starving (well I was). I found a protein powder that I could handle most of the time and did my best to hold it down along with a bunch of vitamins.  Thankfully I had some good friends who helped in finding the powder for me.  Finally this doctor decided that my bleeding was a big deal (but still thought my vomiting was something else) but he did a laparoscopy. However, he was in rush and didn't look around or take any samples of tissue and so he was done with me, convinced I did not have endometriosis. So I changed doctors, again. They didn't know what do to for me and sent me off. This place was good, they believed I had Endometriosis, but they just kept giving me different types of BC until they found something that worked, but they never found anything that worked. Finally during an ultrasound they say my scar tissue and realized I needed surgery again to remove it. They removed everything they could see without magnifying it, so of course they didn't get everything. After that they put me on my first course of Lurpon. It was awful, I had horrible side effects. At least I finally stopped bleeding, for about 2 months, but after that it was the same, I had all the same symptoms, plus side effects. I changed doctors again. This one was really nice, and cared a lot. I had no relief from them, but this doctor was taking time to document stuff. He learned that I was going through labor at times. He knew I needed to find some real help, but didn't know how to help, so he sent me to a specialist in Palo Alto. I saw this doctor a couple days before Christmas and had surgery scheduled by Jan. 2. He spent 4 hours on my surgery and removed everything he could, he took tissue samples and tried to clear it all away. He then started me on BC after the surgery. Things got better after that surgery, I wasn't in pain, I was eating again. (turned out I had scarring on my stomach as well as bowels, ect.) This did not last long though and it started all over again. Thankfully I could/can at least hold down food for the most part, but it has ruined my metabolism so keeping myself at a decent weight it impossible. I have a huge amount of clothing because of it, I end up fluctuating between size 12 and size 16. The last surgery was in 2008 I was dating Steven at this point and we got married in Nov. of 2008. He knew everything that was going on with me, and knew the ability to have children of our own may not be there. He has been great because he doesn't let the doctors ignore me. Well our insurance changed and was no longer accepted by my doctor in Palo Alto. I got very discouraged since it had taken so long to find this doctor so I took a long time before I found a decent doctor, but I found one. He is a great doctor. He is doing everything he can for me, and his top goals are for me to feel good and for us to have kids. In order to get to the kids part we have to gain control of this endo first. That is what I am currently dealing with. Shortly after getting married I started again on the Lupron, this time I did one shot a month instead of one shot for 3 months, and also for 9 months. This time it did work, as far as taking away my pain. Though the side effects were still severe. About a month after I was off of it though, my symptoms came back, and I started throwing up again. This discouraged me a lot.
For now I will leave this as it is it.  This almost gets you up to the present.  I will be going back to the doctor soon, and hopefully will have more news.  I have had a few other tests done, but will share those details when I know more of the result.  For now I wait in pain and with little hope.  I have always been a positive and hopeful person, but right now I am not, which is why I choose not to share more information for now.    I am learning to trust, not in God, I have that, but in others.  

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