Kristen Aileen Santamaria

My Experience        Symptoms           The Aftermath           Contacting Me

I would like to take a moment to state that this page should not be considered a repacement for qualified medical advice, this is simply my experience. I am only sharing the parts of my experience that I feel comfortable sharing.

My pain started November 17, 1998. My birthday, how will I ever forget that? My husband took me out to dinner. While we were out, I began feeling strange, not quite myself. I didn't eat. By the time we got home, I had severe stomach pain. I thought it must have been something I ate that day and went to bed. I could not sleep. I tossed and turned all night. The next morning, I called in sick, this began my battle with a full work week. I don't think I have worked a full week since the week before that.

I waited two days before calling my doctor. I paged him because the office was closed. He asked me to rest and call him the next day if I didn't feel any better. I called him the next day. He brought me into his office and examined me. I cried the whole time. He stated that he wanted a surgeon to look at me and sent me to the ER. I'll never forget the look on his face as he asked me if I could drive myself to the ER. I thought I was going to keel over in his waiting room but I held on.

At the ER, I under went every test imaginable. I had x rays, CT scans, blood tests, urinanalysis and ultra sounds. Of course everything came back normal. I was given a pain shot and sent on my way with some pain meds and a request to call his office to schedule a colinoscopy. I didn't want one so I never called.

After almost a week and a half of this, the pain subsided. I saw my primary again and told him that I thought it was a gyn problem. He agreed and recommended I see my gyn. As I walked out his door he asked if the pain appeared to coincide with my menstrual cycle. I told him that I hadn't had one in three years. He was shocked and wanted to know why I never mentioned this. I explained that I thought since I saw a gyn, I didn't have to share that with him. He expressed concern and asked to be told about these things.

I saw my gyn a few days later. He did an exam and at this point I had been examined four times and the pain was less severe so I did not have too much pain on examination. He stated that I must not be having too much pain because I didn't jump off the table. Here I was biting my lip trying to disguise just how much pain I had when I should have been letting it all out. I learned my lesson. He also stated that he thought it could possibly be endo but the only way to be sure was surgery and he refused to do it because the risks associated with my weight. He said that he wouldn't just treat me as though I had it because the treatment would put me into medical menopause and I would not want that. I asked what I was in now, not having a period in three years. He was of no help.

I went back to my primary doctor and told him what was said. He was very angry and almost called my gyn but thought better of it stating that I would never be able to go back to the office if he called. He asked me to call and get a name for a second opinion. Any doctor worth anything would want to know that I was seeking a second opinion and would kindly reffer me to some one. I called and got the name of another doctor in the office. I was really nervous but I went and was very glad I did.

Before the appointment was over, I had surgery scheduled and was on my way to help, or so I thought. I had my first lapascopy December 31,1998, yup, New Year's Eve. I really know how to celebrate! I felt awful after the surgery. I think I started vomiting before I was even in the recovery area. I kept this up for over two hours, nothing seemed to help. I kept telling them I would feel so much better if I could just go home.

My doctor came in and told me that they found no endo but I did have varicose veins on my uterus which could possibly cause the pain. In a way I was relieved, it was good to know he didn't find any endo but I was no closer to releif.

As the months went on I continued to have monthly pain. The amount of time the pain lasted seemed to get longer and the severity seemed worse. I was sent from doctor to doctor. The GI doctor did a colinoscopy and told me that he thought he saw endo in my GI tract but he didn't seem sure. I know he did five biopsies but the results don't seem very clear.

My symptoms include lower left quadrant abdominal pain, nausea, pain during intercourse, dizziness, inability to sleep, difficulty urinating when pain is severe and inability to get pregnant.

My doctor tried helping me get pregnant with three months of Clomid, this increased my pain greatly. I always knew when I ovulated because that was when my pain got so bad I could bearly walk. We then tried three months of Lupron. One doctor even told me that I must not have endo because the Lupron would have helped my pain. I ran screaming from her. I don't beleive that there is anything we can count on with endo. If a doctor says always or never in regards to endo, I don't trust them.

My pain increased until my doctor hospitalized me in May. I was released after only a day. Less than a week later, I had my second surgery. It was the Thursday before Memorial Day Weekend. Again, I really know how to party. This time I told them about the vomiting and they were able to prepare me for it and reduce it a little. The sole purpose of this surgery was to perform a LUNA procedure. My understanding of this is that they freeze the nerves near the uterus to provide pain relief. After this surgery, my doctor came and told me that he had found adhesions and endo and removed them. At last, I thought, pain relief.

Nope, no pain relief. I think I actually felt worse. My pain manager said that the LUNA procedure might not have been the best idea for me because the nerves can grow back and can be more painful. Wish he had told me that sooner. We did another month of Lupron and then I decided that I wasn't feeling any better on it, so we may as well stop it. We again tried the Clomid to get pregnant. I really want children and it seems a hysterectomy is in my future. My doctor respects me desire to get pregnant and is helping me with that. We did another three months of Clomid with no luck.

I am still having pain on a daily basis. I have better days, right after my period before ovulation but there is still pain, just less severe. It becomes unbearable from ovulation to my next period. Some pain meds that have helped me are Vicoden and Visteril, Demerol shots and Para Cervical Blocks. My gyn does these for me, they give me relief for variable amounts of time but they have been the best thing for me. It is a very painful procedure to go through but if I can stand that for a few minutes, I usually feel pretty good after. I am still trying to get pregnant and will try Perganol next cycle. I am several days late and have taken Provera to start my period after taking four pregnancy tests with negative results. I have also recently tried a TENS unit. Sometimes it helps. sometimes it doesn't.

I have sought second opinions, spent much time in the ER, had countless tests and seen numerous specialists. I see a doctor nearly every day. I belong to support groups and list serves trying to find information to help myself feel better. I have done research on every aspect of this in hopes of helping myself. I am writing this story and developing this web site in hopes of helping some one else.

Is it any wonder I see a counselor every week? I was forced into disability from my job when I asked to work part time. I probably wouldn't be able to work at this point anyway. Once I was on disability, they fired me. I am currently filing charges against them. My husband and I have changed our life style considerably. We have canceled four vacations. The most recent being thanksgiving with our families. I could not bear the thought of a six hour drive and running around to visit people. I have left stores in the middle of shopping because I thought I was going to keel over. I once left my husband in the middle of a grocery store. I handed him a jar of spagetti sauce and ran from the store. I have found myself hanging over a grocery cart wondering if I would make it through the store. We are doing a lot less and I feel terrible about that but I just can't do everything I used to. My doctor told me not to cancel my holiday plans becuase he thought I would be more depressed, he was right but I would not have made it through.

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I also participate in many list communities through onelist and can be contacted there. I moderate two lists and you are welcomed to join. You must go to onelist by using the link provided above and become a member, then you will be able to subscribe to my lists. I moderate Chryseis@onelist.com. This is a list for women who feel that they have health related problems from abuse they may have suffered, emotional, physical or sexual. I also moderate atypicalendo@onelist.com This is a list for woman with endometriosis or their friends and families to vent, get support, ask questions or share stories and jokes. Laughter is the best medicine. If you would like more info please feel free to email me at the above address.

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