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Re: my story and a few endo questionsFrom: Daisy (anonymous@obgyn.net)Mon Aug 5 14:01:22 2002
At Fri, 19 Jul 2002, lisa wrote: > >At Tue, 16 Jul 2002, Dena wrote: >> >>Hi Daisy, >> >>I'm so sorry to hear that you are going through so much. I wish I could >>offer some good advice for you. If everyone knows what area you live >>in, they might be able to suggest a good doctor near you. >> >>With all your poor body has been through, I would definately suggest not >>to try Lupron. It is too great a risk for possibly having temporary >>relief. >> >>Take care of yourself. I know it's such a hard thing to deal with but I >>too remind myself that although this is horrible and no one should have >>to endure such pain, this is making me a stronger and more educated >>person. I definately cherish the less painful moments and make the most >>of them! >> >>Hope you find relief soon. You are in my thoughts. >> >>At Tue, 16 Jul 2002, Daisy wrote: >>> >>>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 >>> >>-- >>Dena >> >Dena, Although I do not have much advice for you, I wanted to let you >know that you are not alone. I am 21 and was just diagnosed w/ Endo on >the 11th. It is definetly scary enough but to have it at such a young >age seems to just add to the fear. I understand your frustration with >the Dr.s. I started my period when I was nine years old and had >horrendous cramps ever since. I wonder why the doctors did not take a >more aggressive approach. I was told that it was part of having your >period. So it was embarrassing enough to be the only girl with her >period at that age but then to have your parents have to come pick you >up from school because your cramps are so awful was worse. I went to a >very small school and everyone knew everything! One doctor wanted to put >me on the pill when I was 14 but I felt that was too young so I refused. >When I began to experience pelvic pain around the age of 17 I told my >gyno and she suggested that it could be due to wearing jeans that are >too tight!!!!! Can you beleive that?!?! She should not be allowed to >practice! I went to a different dr. and she started to talk about endo >and I informed her how people have suggested that to me when I would >tell them about my pains. She wanted me to go on Lupron or depo provera >but I didn't want to. She sent me to the best specialist who felt that >I had endo and agreed that a laproscopy was best. I was supposed to >have it on Valentine's Day but had to cancel due to a bad car accident I >was in during Jan. I just had the surgery and I'm in stage 2, it was on >my left ovary and behind my uterus. I'm worried about all of the >obstacles that lie ahead too. I know I will have children but it >definetly seems that there is a long emotional haul coming our way. I >kind of feel stupid though talking about it because I know there are so >many people worse than me. I'm also worried about how fast it will >progress. I don't know what to tell you except that I feel for you. I >definetly urge you to try to find a support group. I'm trying to locate >one right now but it's a little hard. Good luck with everything! I'll >be thinking of you! I know it makes me feel better knowing I'm not the >only one with it at this age! Sincerely, Lisa > >-- >Lisa > Hi Guys! Thanks so much for the advice. I am sorry that I have not replied sooner to thank you, I've just been real busy. Well, I am writing for multiple reasons. Number 1 is that just today, my bleeding has FINALLY stopped!! YAY!! Ok, now that I'm done with that, I come to my second point of writing. Where do you recommend me doing research/posting my story? I still feel things aren't right, and the pain is still coming. It's like a flu-like feeling in my uterus, that I can definately feel, and the sharp pain in my ovaries. These do not come with each other most of the time, and they do not alternate. They seem to be on their own schedule. Any more advice that anyone would have, would be great! By the way, you asked where I lived. I live in the burbs of Philadelphia, PA.
-- Thanks! Daisy
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