Re: New here - my story - advice please

From: Sue (compstar@bright.net)
Thu May 1 18:50:57 2003


OH Boy, no answers here, but I surely do see the run around, and that hr of pain free, is HELL once your hr is up! I had surgury was pain free 10 days... TEN DAYS.. and they are back, .. I have all the simptoms you have with the bowels, and I can feel the adhesions clamping down. I am using my own MIND, and prayers to survive.

I am using relaxation techniques, and focusing on the bowels and spasms. I am also trying my best to spread the word, to bring this to everyone's attention... we NEED help, not pills to cover pain, not rolled eyues, meaning we are hypocondriacs, and not placated... if CUTTING will not help. FIND US SOMETHING THAT WILL.

sorry, just really wanted to say, you are not alone. Someone here will be able to help, I am finding out such good info just being on the mail list.

--
SueR in Ohio

>----- Original Message ----- From: "Elaine" <noemail@email.com> To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Sent: Thursday, May 01, 2003 7:39 PM Subject: New here - my story - advice please

> I had my second c-section in 2000. After that, each month my periods > became progressively worse. Doctors said "hysterectomy or birth control > pills." I can't take the pill, so in October of last year I decided my > quality of life was more important than a uterus I'd never use again. My > husband and I planned to have no more children. > > October 2002, TAH (total abdominal hysterectomy). The only scar tissue > was on my bladder. It had adhered to my uterus which I've read is > common after c-sections. The path report came back with > adenomyosis...no one had even said that might be the problem. > > The recovery was hard. At two weeks post op I had a 3 cm cyst form on > my left ovary. > > By the end of October I had a cystoscopy (camera in the bladder), they > had me have a CT scan and then a second one with a barium enema. My > bladder hurt, or so I thought, even though the many medications they > gave me for bladder spasms didn't work. > > Finally in mid November, I felt a little better. My left side ached > still, but from the cyst..sharp shooting pains here and there and dull > ache that was constant. That didn't get really bad until December, > around Christmas. > > The end of January, they checked the cyst and it had grown to five cm. > It was removed early Feb. When I woke up, the doctor said "no wonder > you were in so much pain, you had adhesions I had to cut down attaching > your intestines to your abdominal wall before I could even get to your > left ovary." Funny, I suffered from December until Feb., but it didn't > seem like anyone took me seriously. I'd have horrible bouts of stomach > cramps (worse than labor and I've gone through labor twice - once > induced on pitocin) and then finally have diarrhea. My doc suggested > IBS - I've NEVER had intestinal problems, I didn't buy it then and I > don't now. You don't go under for surgery without IBS and wake up with > it in my opinion. At any rate, he put me on metamucil 3 x a day and the > pain from gas made me stop that. I've since read high fiber is not for > people with adhesions. Is that true? > > So, the cyst was removed and I felt GREAT. The first time that left > side hadn't hurt in months! My right side was real sore but my doc said > he had to use that side so much to get through the scar tissue that it > was expected. Around two weeks, my left side got a dull ache. I'm > terrified...I start having panic problems where my left side aches and I > get so worried something ELSE is going wrong my heart tries to jump out > of my chest. > > I go back for my four week post op. I tell him about it. He does an > ultrasound and all looks fine. It might just be healing still. I live > with it until about two weeks ago. I had the horrible cramps (the kind > where you don't know if you'll throw up or have diarrhea), had diarrhea > and then my intestines stopped working right. Leading up to this > episode two weeks ago, I was having a BM every single morning and > although the ache on my left side was irritating, I could live with it > if I didn't overdo it working in the yard or what have you. Now, I'm > back to where I was after the hysterectomy - I can't seem to go unless I > get the horrible cramps. I'm not constipated, when I do go it's soft, > not well formed and squiggly looking (sorry if that's too much info). > > So, Sunday I go to our ER. The doc listens to my bowels and says scar > tissue. How do you listen to bowels and come up with that? I was given > a Toradol injection and it didn't help. I'm now in a LOT of pain on the > left side and in my back. > > I see my primary care doc this past Tuesday (not a doc, but a physicians > assistant - great insurance we have). He sends me for an xray and says > I have a lot of gas built up in the large intestine. Says obstruction > and he's consulting with a surgeon. Leaves me sitting for thirty > minutes with me scared. Comes back and says they are referring me > somewhere but don't know where. The surgeon says he sees nothing acute. > > No call yesterday, nothing to try to get my bowels working. I took > exlax, went a few times, but like the last time I went, it's not formed > and the cramps kill me. Finally they call today, I'm still in pain and > they tell me to keep my follow up from when I had my cyst removed. That > was in FEB!! There is NO follow up. I get sent to the GYN department > via the phone. The lady there was nice and is trying to find out why > I'm getting the runaround. My regular GYN is on vacation (great doc by > the way), but they will try to get me seen by Monday. That will be a > FULL WEEK since the bad pain started. > > So here I sit. I'm scared that this is going to be "me" for the rest of > my life. The nurse today says she saw my xray and it's not indicative > of an obstruction. That was a relief. I know to watch for distention > and vomiting and I am bloated, but other than burping (which is unusual > for me), I'm not throwing up. > > I'll see a GYN sometime and they'll say IBS. They asked if I was on > pain killers! Pain killers? My doc didn't even give me MOTRIN!! I don't > have anything but motrin left over from my surgery and if I did, I > certainly would take it because I'm in pain - but it doesn't seem like > anyone cares :(. > > I just want to feel better. I want my life back. I'm 31 years old, I'm > down to 108 pounds. My appetite is now gone and when I do eat I can't > eat much because I'm full before I finish. Up until two weeks ago I had > a great appetite and was finally putting on some weight again. > > Any advice on talking to the doctor? I'm in so much pain I am biting > everyone's head off and I'm normally a nice person. I'm finding I do > not like the new me :(. I sound like a lunatic, but if I could just > have an hour where I could be pain free, I might find the real me in > here somewhere. Thank you for listening to my long drawn out story. > > Any words of wisdom would be helpful. I feel so alone. >


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