Karen,
Hi, I've been surfing your pages and You've touched my heart. I understand pain, I've been dealing with pain since I was 14. I am now soon to be 35 and still going strong.

I found your page on Endometriosis, have you ever heard of Adenomyosis. I hadn't either till a year ago May. Up until Dec. I was living in Iceland with my husband and 4 children. He's in the military and we loved it there.

Since the birth of my last child who will be 8 on the 27th I have had severe cramps, mood swings, and all those really bad "You're PMSing" symptoms. I knew I was in trouble about a year after her birth because I was at the same age as my mother and aunt when they started having problems. You see my Aunt was in her early 30s when she had a complete hysterectomy because of grapefruit sized cysts on her ovaries and Endometriosis. My mother started having problems in her 30s but waited 10 years to do anything about it her case had gotten so bad I had to through her out of my home at Christmas one year, I hated that but when she literally went nuts, attacked my husband and kept telling me to divorce him I couldn't take it any longer. I knew she had a problem and with her letting it go as long as it did her hormones were so out of kilter that she was scitzo. She had surgery that next May and talk about a totally different person. The next time she saw us, my husband she gave him a big hug and asked him how he was etc. We both almost dropped our teeth.

She had Endometriosis and cysts, She had to go to the hospital a day early so they could give her blood for the surgery. When they did the surgery she had so much "old blood" in her pelvic area that they drained off 3 1/2 of the quart jars, cut her uterus away from her colon. In general it was a mess.
Well I knew that I was a candidate for problems, especially after my grandmother, who went in to the hospital two weeks before my daughter was born. They had found that she at 72 had uterine, colon and ovarian cancer, a tumor was growing in her chest around the spin and moving to her brain. I don't know how long it had been for her to have a Pap but that was what started the whole deal. A routine pap, she went home and started hemorrhaging, my aunt called 911 and they told her to take a cab, of course my aunt and grandmother didn't know that she was hemorrhaging. But 911 should have done something about a woman in her 70's bleeding uncontrollable. They didn't.

Well, after several years of pain and really bad periods. Mine would last 3 days then a day off and then one more day. The 3 days would be liver like chunks and the last day would just be brown spots. In June of 95 I had a routine check up with a male dr. I asked him if there could be a problem especially since in Sept 94 I weighed 130 lbs and by May I weighed almost 170 and I'm only 5' 3 1/2". I was severely over weight even at 130 I was over weight for my height. He just told me that I had changed my eating habits and sent me to a nutritionist. Wrong. I couldn't believe it.

So at the end of Jan 96 we were at church(evening)and the men had a meeting about the new building(we went to a mission church). So I was sitting visiting with the ladies and started having what I though was gas pains. After the meeting we were to have our family pictures taken for the church bulletin board. So we get that done and I tell my husband to hurry and get me home I had to go. We get to the house and I run in while hollering at all my kids the bed time routine for the night and to get things read for school etc. Go to the bathroom, nothing. So I go to change clothes and I felt that if I could just lay down maybe the pain would go away. I lay on my back and it just got worse so I think I'll roll over to my left side maybe that will help. No it just got even worse. By the time I rolled back to my back(and all of this was in about a 5 min. period)my husband walks in and I'm in tears. He asks are you okay, I said Honey there is something terribly wrong you have to take me to the hospital. So he puts my shoes back on for me and gets me to the car. We only lived maybe all of 1 mile from the hospital and it seemed like for ever. I had started going into shock, my body was shaking uncontrollable like I had a bad chill then it would subside and start all over again.

So now I'm in the ER it's just a little after 9PM and the Dr. has blood drawn and starts pressing on my side. It was above my right hip bone so they didn't know if it was my ovary or an appendicitis. He would push in then let out real fast and say "does it hurt worse when I do this or this?" Well I wanted to come off the table, slap him on each cheek and say "does it hurt worse when I do this or this?" I didn't of course because I could barely sit up but I did tell him that both hurt terribly. Well the blood tests came back and he asks if I knew I was anemic. I told him I had been when I was pregnant with the last child(by the way my tubes had been tied after her birth)They had given me extra iron to take and it straighten out but I hadn't thought that I was. Well he says I was about 4 quarts low of a full tank. He was very worried about that. He decides to do a pelvic check and that's when I wanted to kill the man and left major nail bites in my husbands arm. So they admit me at about midnight still not knowing what the problem is and I'm still in pain because they don't want to give me anything till they figure things out(the Navy - we are AF). So they give me an IV for fluids but still no pain killers and the surgeon wont be in to do my surgery to scope out the problem till 7:00 but I still have to wait till 10:00 because they have other patients lined up for surgery. So I lay in pain all night. They do the laprascope, find that my appendix is perfectly healthy but that I had a grapefruit size cyst rupture on my right ovary, and that my uterus is the size as if I were 4 months pregnant. So after the surgery the OB/Gyn comes to see me wonderful Lady. I asked her could this be hereditary because of the problems with the other Ladies in my family. And she says "Yes it is possible" I explain to her the problems with my last pap check up and his attitude and she said that of course these problems don't show up on paps. Womens medicine is still the farthest behind of all. So anyway I get scheduled for a partial hysterectomy. Because of my age and my ovaries are still in good shape she didn't want to do a full. But my surgery wouldn't be till May 3rd because she wanted me to take mega doses of Iron and start Birth control pills. So I do the iron and the pill. I thought I had been fine for the most part but when my iron level started going back to were it should have been I was lethargic, tired all the time. It was terrible I couldn't get out of bed. I'd get up to get the kids off to school and go back to bed and by the time they got home from school at 3:00 I'd have only been up maybe an hour sometimes not even that long. I couldn't wait to get the surgery so that I'd feel better. I was so anemic that for years I craved ice. I ate more ice than I would have drink in my glass. I knew I craved it but like an addict I couldn't quit eating it. I'd go through 6 trays or more a day. I know it sound silly but when you are anemic that is one of the symptoms, to have a terrible craving for ice. Neat huh.

Well May came and they did the surgery I had another cyst on my left ovary which they took care of and cleaned up both ovaries, removed the uterus, cervix and tubes. Tacked up my ovaries on each hip. I was in the hospital for 5 days and in bed for 6 weeks. I completely quit all caffeine and after about 2 months realize how unhealthy I had been. How irrational I would get. And loved my husband even more for putting up with it for all those years. The results on the uterus had come back and I was told I had adenomyosis which is almost the opposite of Endometriosis. The definition for Adenoma is usually a non cancerous tumor in or resembling glandular tissue. By itself an adenoma causes no symptoms, although various disorders may result if the adenoma presses on a nearby part of the body. Well in my case the uterus had grown together on the inside making it like a large basketball. So all is well now, I continue to take birth control pills till I hit menopause for the control of the cysts so that they wont grow to over large sizes again and so far it seems to be working.

Well I hope I didn't bend your ear to much but I wanted to tell you that adenomyosis is a very unknown disease. I'd never heard of it although I had heard of Endometriosis. So this is just another problem of women's problems that are little known about.

My prayers are with you and your family on your on going struggle. I've conquered my pains. My chronic back pains from the time I was 14 and in and out of hosp and tests. From being told at 16 that if I didn't stop dancing with the drill team and sit at home and do nothing or I would end up in a wheel chair to telling the Dr. that I wasn't about to quit dancing it was my life to find another solution and doing it(I even got a drill team and cheerleading scholarships to college)I told that dr I wouldn't stop dancing and I didn't and I'm not in a wheel chair. The main problem with my back which at the age of 25 I finally got someone to listen to me and realize that my right leg is almost 1/2 inch shorter than my left and that was what through my back out of wack all the time, they gave me a lift for my right shoe and things are better. Perseverance, determination, and the belief that I can over come anything with Gods help got me through most of my life problems. Through my back, to my brothers leukemia and death, my grandfathers heart disease and death, my grandmothers cancer and death, and now my sisters MS. What doesn't kill me makes me stronger.

Thanks for listening/reading this. I hope I didn't carry on to much.

A new friend in love, A sister of the LOTH,
God Bless,
Michelle Bartee
ShelleB1@excite.com Shellebaby's Homepage

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