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Re: -ovarian remnant syndrome & endoFrom: Cathy (anonymous@obgyn.net)Mon Jan 29 22:59:39 2001
At Wed, 10 Mar 1999, yenta wrote: > >Hi You Two LOL:) >I found your posts to be of great interest -- and thank you for >admitting to your anger and frustration re physicians who go on their >own preconceived notions as opposed to LISTENING TO US!!!! I know WE ARE >ALL FRUSTRATED to have to suffer through "misdiagnoses" only to find >that when we at last acquire a "specialist", the endo still wins out in >the end:( >Michele ?J., would you please email me as to who your "endo King" is -- >and was it successful or are you still suffering -- (sorry, I haven't >read all of the posts yet). >Thanks, >Yenta >TX > >At Wed, 10 Mar 1999, D.N. wrote: >> >>Hi Michele, >> >>Thanks for responding. You had your remnant removed? How long ago? How >>many surgeries have you had? Did you go through surgerical menopause >>before the remnant was removed? >> >>I had a hysterectomy and my left ovary removed in 1995. The reason was >>due to fibroids. I had extremely heavy periods. I suspected I had endo >>for quite a while, especially since my sister had it too. But the >>doctors I had at the time dismissed me and also misdiagnosed me with IBS >>and they said my periods had become heavier because I was not ovulating. >>I knew I was ovulating because I had mittleschmirtz since day one of my >>periods. My doctor decided this based on the fact I was 36 at the time >>and she ASSUMED that is why they were changing. It was not based on any >>laboratory tests. This is kind of funny now, but it wasn't then, that >>the doctor that misdiagnosed me did a pelvic exam and did not find >>anything unusual. When my uterus was removed, it was the size of a 2 >>1/2 month pregnancy. Yes, I have anger at doctors. >> >>Anyway, at the time of my hysterectomy, I ended up having a major >>hemmorhage and was transfused with 7 units of blood. This might have >>been avoided had I been diagnosed properly earlier. I was extremely >>anemic going into surgery which apparently raises your chances of >>bleeding during surgery. >> >>Endo was found during the surgery. My left ovary and uterus had adhered >>to my sigmoid colon. (No wonder my bowel was irritable) >> >>In late 1996, I found that I was having pain in my right ovary. My >>doctor, not the one who misdiagnosed me, did an ultrasound and found an >>endometrioma. So I had the remaining ovary removed in Feb 97. >> >>I went through surgerical menopause. The whole nine yards of it. Went >>on Premarin. Then about 5 months later started having symptoms similar >>to mittleschmirtz and cyclical pain in the left side where the endo was >>found. My doctor at first thought it was a periotineal cyst. I kept a >>chart of symptoms and took my basal temp every A.M. It showed indeed it >>was an ovarian remnant. Transvaginal ultrasound also showed that I had >>ovarian cysts. >> >>Since Jan. 1998, I have been on various BCP's to control the cysts. The >>low estrogen BCPs did not work. So now I am on Ortho-novum 1/50 (also >>tried Ovcon 35 and it works similarly). The weird thing is that no one >>can explain is why these pills suppress my estrogen level to >>post-menopausal levels. So I end up with hot flashes, (not as bad as >>surgical menopause) irritability and some depression. If the pills did >>that to all women, then why do they prescribe BCPs for perimenopausal >>women to regulate their hormones. My doctor and the Ortho Corp. don't >>have any answers. My doctor, the one who did both surgeries is >>wonderful. She listens to me and takes me seriously. We have a good >>working relationship. But it is still hard dealing with this endo and >>remnant day after day. >>Surgery is not really an option for me, because I am full of adhesions. >>I wonder if ovarian remnant syndrome happens more often that is >>recognized or admitted by M.D.s because in someways they have to admit >>they made a mistake? I wish that more doctors would actually listen to >>their patients, and not go on preconceived notions. I think that >>managed care also plays a part in misdiagnosing problems. If the doctor >>is rushed, he/she will probably go on preconceived >>notions due to lack of time and money. More testing needs to be done. >>I hope that by sharing my experiences it might help someone else avoid >>having to go through what I have gone through. >> >>Please excuse my anger and sarcasim. Hi! My name is Cathy and the above messages sure sound like the hell I'm going through. I had a hysterectomy Sept. 27th and the pain from the surgery was less than what I am going through since then with bowel and intestinal problems. I was told I probably had IBS and the pain I am going through with my joints and shortness of breath etc. sounds alot like Fibromyalgia. I have a Doctor's appointment to check out the possibly of Fibromyalgia but wonder if I may also have a remnant or scar tissue. I am going to ask for a blood test to check for cancer and get a base level because the foot and ankle pain I'm having can sometimes be an indicator of ovarian cancer I've recently heard in the news. After what my girlfriend went through with Chemotherapy last year I do not want to have to take that route either. Its really scary when so many of your friends have died with cancer and your not sure what your body is doing. I only know my life is becoming hell. I go to work and come home for a nap. If I have the energy after the nap I make supper and lunch for the next day but I don't have the energy to clean up the dishes. If I'm lucky I get my clothes ready for the next day. Sometimes I can go dancing but I still get pain from that. I tried exercising in the water and had pain from that and couldn't even last an hour with part of that time in the hot tub and the sauna. I used to be able to do 1 1/2 hours. I tried walking up the stairs on Saturday to check out an fitness gym and almost passed out on the stairs and was sick for the rest of the day. Please if you can help I sure need it now!!!!!!!!!!!
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