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Re: -ovarian remnant syndrome & endoFrom: D.N. (anonymous@obgyn.net)Tue Jan 30 07:19:15 2001
Hi Cathy, I am sorry to hear that you are having such problems. I don't know if you know or not but having a CA-125 to check for ovarian cancer will be difficult since you have endo, the endo will usually result in a positive test. So it doesn't help much with the cancer thing. Have you had a transvaginal ultrasound? This sometimes will show if you have cysts forming. Also, if you think you are cycling/ovulating try taking your basal body temp everyday and chart it. You might be able to try continuous BCPs or Prometrium to help if you do have a remnant left. They worked for a while for me, but I had to stop because of migraines and depression. Now I am on nothing and my cycles are getting more painful. I am not sure if I am going to try Syneral or not at the point. As far as fibromyalgia (sp?), I don't know. I know if you are not getting adequate sleep (from my experience) you probably will feel more pain. With IBS, I was misdiagnosed with that before my hyst. I didn't really have that it was the endo. Please write again if you have more questions. I wish you the best.
-- D.N. At Mon, 29 Jan 2001, Cathy wrote: > >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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