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There is HOPE!!!!!From: Alli (anonymous@obgyn.net)Tue Oct 25 21:14:23 2005
I have been suffering from Endo since I was 12 years old when I started getting my period. I would have the most intensive periods every month, I would have a sharp stabbing feeling in my lower back and on my sides. I would also have very heavy bleeding with quarter sized blood clots and my periods lasted 6 days and occurred like clock work every 29 days. As I got older my periods become so painful I would miss school and work at least 2 times a month. I remember four years ago I was admitted to the hospital four times in one month because the pain I was suffering from was so sever I could not sleep, eat or move!! I saw 12 different doctors in one month and not one could explain my problem. I was told I could have IBS, (Irritable Bowel Disease), appendicitis, Crone’s Disease, back pain, heartburn; you name it I was tested for it. However, every test came back normal. I told my doctor at the time that I felt I needed to see a Gynaecologist because my period was late (which it never was or had been before) and I knew for 100% I was not pregnant. My doctor felt I did not need to see anyone and sent me home. I was concerned because it had been 4 months since my last period and there were no signs of it starting any time soon. Finally I was sent for an ultra sound and that came back negative for what my doctor at the time thought I might have (polycystic ovarian syndrome). I then was given the go ahead to see a OB/GYN, however, she was not helpful at all and sent me home saying nothing was wrong because when she started my exam, my period started. I was happy it started because I had been very concerned, but I knew something was still wrong with me. I continued to have painful periods, which got worse with each passing month. I felt I would have to suffer like this for the rest of my life, however, I found hope. I found the most amazing doctor who helped me figure out the reason I was in such pain. My doctor did a pap test and a pelvic exam and noticed I was very tender on my pelvic wall. After asking me a serious of personal health questions and ruling out STD’s, she felt it would be best to see the OB/GYN in the clinic. I made an appointment and a month later was able to see this new specialist. After performing a pelvic exam, she felt the same way as my GP Doctor. I probably had ENDOMETRIOSIS. “Endo, what?” I said. My doctor proceeded to explain what this was and I was in disbelief that there could be a name for what I was suffering from. I did not have this all in my head like my last doctor said I did, I could really have a disease causing my pain. I had a laparoscopy two months later and when I was called in for a follow up appt. to my surgery, I was diagnosed with having ENDO and fibroids which cause heavy clotting and bleeding. I was then put on continous birth control pills and heavy-duty painkillers, but that did not stop my pain…..I ended up in the hospital on my 40th day of bleeding, that’s right, a 40-day period!!!!! I was taken off the birth control pill and placed on Depo-Provera, with estrogen pills. THAT WAS A NIGHTMARE!!! I suffered from EVER single symptom there was….night sweats, hot flashes, problems sleeping, weight gain, mood swings I felt like I was having menopause….oh yeah, did I mention I was still have my painful periods? After suffering for 12 years through pain and taking every pain killer known to man….I honestly wanted to die, having blood clots the size of golf balls and medium sized carrots I was ready to throw the towel in….but then a light at the end of the tunnel happened for me. I was sent to see the top specialist in BC Canada (where I am from) and she happened to be in the same city I live in and she performed a miracle surgery on me. I had a presacral neurectomy, which has finally brought some normalcy to my periods. I finally have a 70% decrease in pain and can finally live a normal life. I had this surgery in June 2005 and finally I feel free of my periods. I still get heavy bleeding and clots, but the pain is gone and that was my main problem over the last 12 years of my life. I was diagnosed with having IC and IBS, which are linked with Endo. I am on medication to help sleep at night and minimized the pain of IBS but since my surgery the symptoms have almost subsided. I am going to see a nutritionist next month to suggest foods for people with endo, IBS and IC to help keep the symptoms and bay. I recommend to anyone who has been through the hell I have been through to look into a presacral neurectomy because there is hope and it could help you.
-- A Russell College Student
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