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my story and a few endo questionsFrom: Daisy (anonymous@obgyn.net)Tue Jul 16 15:09:04 2002
I am 19 years old and I am about to start my Junior year in college. I was diagnosed with endometriosis, after having chronic servere pelvic pain for a little over a year. With my early breast growth, I was presumed to get my period by 11. With continual questioning of my doctor, by 15, I was quite nervous that I had not gotten it. That year, I had a day of extreemly light spotting, and that was it. When I was 17 I had another day like that. That was all of the natural periods I had had. Concerned, I went to my ob/gyn. (well, at that point it was mother's and soon to be mine). They induced my period, and put me on birth control. I started to bleed very heavily, and it continued for 3 weeks! They changed the pill two more times, and the bleeding happened each time! At this point in time, I was informed by my gastro to go off the pill, feeling that this may be where my chronic pelvic pain was derrived from. I had gone to the emergency room at school for the pain. They informed me that it was menstrual cramps. I informed them that I was just finshed my period. Needless to say, they dismissed me with some percaset, and told me that it was meerley cramps. After another week of pain, I went home to my family practitioner. He was insistant that he thought I had kidney stones. He ran test after test, and each one came back negative. A week later, he gave up, and told me to go to the emergency room, and see what they had to say. I had both an internal and external ultrasound done. They came back normal. I had blood work done. That all came back normal. I was introduced to a gastroenterologist. He was an extreemly nice doctor. He was very concerned as to why I was having these pains. He told me to go off the birth control pills that I was taking, hoping that that was the cause. It proved not to be, and I did not get my period again until 19. With him, I had a colonoscopy. Other than a small polyp, which came back uncancerous, nothing was found. He went through, and tried different things for me, hoping to elleviate the pain. I finally stopped going, because I had a short spell of relief, and wanted my summer off. When the pain returned, I was angry at myself for not persuing the cause previously. I called my ob/gyn, and made an appointment with the nurse practioner there. She gave me a pelvic exam, and said everything looked normal. She then recommended that I have a laporoscopy to check for endometriosis. My doctor was reluctant to preform the surgery, feeling that I did not have ALL of the symptoms, so therefore I must not have endometriosis. He did, however preform the surgery. I had the laporoscopy done in Novemeber of 2001, which was when I was diagnosed with endometriosis. He said it was a fairly mild case, and did not understand why I was in so much pain, if the woman who had the surgery after me, was covered, and had barely any symptoms. Obviously he did not know much about the disease, which put me on edge. At the post-op appointment, he discussed wanting to put me on Lupron-Depot. I was extreemly nervous about placing my body under that type of treatment, at 19. When I questioned him about the treatment, my age, and my lack of periods, he was not informative, and pushed that I just go on the treatment, and he'll deal with other things later. Concerned, I tried to contact a specialist. He never returned my calls. Defeated, I gave up on trying, and just continued life for a couple of months. Luckily, a friend of a friend (you probably know how that works) knew someone who was a great endocrinologist. I made an appointment with him immediately. He has decided to treat both the endometriosis and lack of periods, feeling both as equally important. He informed me that my lack of periods could lead to higher risk for endometrial cancer. So he induced my period, and put me on a pill continuosly. I have now been on the pill for a little over 5 weeks, and am still bleeding. I have not stopped since it was induced 6 weeks before. To make matters worse, the pain had come back a little bit ago, and is starting to be fairly bad again. I contacted the doctor, and he gave me a 10 day supply of permarin, to help with the bleeding. It has not helped. I am frustrated and tired of dealing with doctors, and them not knowing what to do with me! I try to keep a positive attitude about life, and whatever doesn't kill me, will make me stronger. Some days it is just SO hard! I want to have a family some day (in the not so distant future). I worry about the link to infertility, especially because I am so young. I also worry about the possibility of this pain not just being endometriosis, but actually being endometrial cancer. Occassionally, I get the 'why me?' attitude, and just sit and cry to my boyfriend. It is not easy, and I hold an extreemly high regard for others that have this disease, or any that keep a great attitude about life. I was wondering if anyone knows anything about the connection of these problems? Or if anyone else has had similar problems? Is there any type of treatment I should be seeking, or seeing a specific type of doctor?
-- Thanks! Daisy
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