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Unread 06-20-2005, 09:10 AM

I have been diagnosed with Adhesion Related Disorder due to my tvh (Nov. 04). I had a lap 3/05 and extensive adhesions were found and removed. In April 05 symptoms returned and gyn said that had to be it. I am now seeing pain management dr. Not much relief-some temporary relief. My question is does any one else's pain show up in different places? I have the originating spot on lower left side which always has pain to some degree, but today my back is killing me and have a tight feeling from my rib cage down. Some times it's my bladder the inflammation causes me to pee like a dribble and can hardly stand to sit. My GYN found alot of "trapped" fluid in my pelvic region during the lap-it showed up on U/S as cysts. He said the scar tissue had trapped it like bubbles. I assume this may be why I am so uncomfortable today. Any ideas would be appreciated. I do see PM Dr. on Wed. of this week. Thanks
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Unread 06-20-2005, 10:01 AM

hi hon, sorry to hear your having a hard time. your pain sounds a lot like mine, I'm 6 years post op, tvh. my pain started a few months ago. pressure like someting pulling, then sharp pains through the vagina. the doc thinks my bladder has fallen. but now she's leaning towards adhesions and possible intercystial cystitis, which is a chronic inflamation of the bladder which makes your left side ache and lower back. I'm leaking urine and have very painfull intercourse. I'm determined to find relief for these symptoms. good luck to you, god bless.
Your day is what you make it.
Unread 06-20-2005, 10:40 AM

Thanks for replying. I forgot to mention that intercourse is also very painful. Like something is being hit. When lap was done gyn found my right ovary attached to the back of my vagina-he said no wonder it hurt-compared it to a man being kicked in the groin repeatedly. Sounds like fun doesn't it? I am only 35, and did and still try to have a very active sex w/ hubby. It's very frustrating to feel this way most of the time. Before the hyst. I felt great most of the time, very active and energetic. My only complaint was very heavy bleeding. I think I dealt with that better than this.
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Unread 06-20-2005, 03:07 PM

Hi there,
I loved your quote "I think I dealt with that (bleeding) better that this" ALOT of us do!!! Believe me, if I could turn back the clock, I would have NEVER let this be done to me!!! But anyway, I vent. Yes, my "pain" moves also!!!! Dr. at chiro's office asked me if I could pin point it, as he would try a trigger point injection just to see if I get any relief. I can't pin point it at all!!! I do know if I wear tight pants and sit for long periods it is more like a "bruised" feeling. There is no ryme or reason to this at all. Some days I feel really good, not like before surgery, but I can function. Other days I ache. I just live for the "good" days, and take the bad as they come. There is not much more you can do at this point. I had a CT scan. and an IVP dye test and nothing showed, so the general opnion is "adhesions". Sound to me a lot like the "endo" answer when nothing showed. I think some of us traded one problem for another. Good Luck in your search. How is you PM doctor treating this???
Unread 06-20-2005, 09:43 PM

Dear Sisters,
Yes, indeed--if I could turn back the clock I also would never have had the hysterectomy done to me. I had a LSH in October 2004 and had to have another surgery in November 2004 to stop a hemorrhage from the cervical stump. I now have adhesions throughout my pelvis and abdomen. I have a partial bowel obstruction so I can only eat pureed foods. Because of the hsyterectomy I have developed plevic prolpases: rectocele, cystocele and a prolapse urethera. I will never regain the health I had prior to this awful surgery.

Why did I have this surgery? Because my gyn (no longer my gyn!) who "doesn't do surgery anymore" told me that my fibroids (which were esentially asymptomatic) were causing my vertigo and dizziness. HA! The gyn referred my to a surgeon who did the LSH. I later found out that this particluar surgeon has a terrible reputation and has numerous medical malpractive suits against her. I have only myself to blame for not doing the research, not getting a second opinion and for not trusting my gut instincts. Somehow way in the back of my mind I knew that fibroids could not be causing vertigo. For some women having a hysterectomy is the right thing to do for their long tern health, for others of us, it's a never ending cycle of pain, more surgeries and a radically reduced sense of life.
Unread 06-21-2005, 01:54 AM
hi again

Hi, thanks for replying. I know exactly what you are talking about. Here it is, 3:45 am and I have insomnia again. Even taking an Ambien doesn't put me out for long. Just another lovely side effect to this horrible surgery. And why didi I have it? Because of an ovairan cyst. I let my GYN talk me into a complete TAH/BSO because "your 46 and won't need this stuff much longer" I also didn't get a second opinion. I just believed it would be snip-snip and all would be well and I would get on with my life. Some life I have now. Scar tissue, causing pain to flair up when ever, insomnia, and just feeling "flat" all the time. I wish I had emotions like I used to. I miss my ovaires, and feeling "normal". I also had a "gut" feeling that this was wrong, but the dr talked me and my husband into it. He gave us the feeling that this was the way to a "pain free" life. Yeah, right.
Unread 06-21-2005, 06:28 AM

Hey Whatsnormal & Westcoast:
Thanks for replying. Just wanted to let you know I wasn't planning on the hyst. I went in to have an operative hysteroscopy to remove the fibroid and cauterize my uterus. He worked/cut for an hour on the "huge" fibroid which had consumed my uterus (enlarged to the size of a 12 week Preg). It began hemorraging (sp?), my gyn whom I do love, spoke to my family and suggested this was the only course to take due to the emergency of the sitution, so I pretty much wish I had never complained about the bleeding to begin with. Although when the uterus was removed he could see and pathology confirmed that the lining of my uterus was "full" of fibroids waiting for space to grow. My PM Dr. is treating me w/ neurontin. Low dose 300mg per day (I know people that take 1800mg per day). I can't say it's helping very much. Yesterday was a miserable day. I saw him 4 weeks ago tomorrow and to be honest I think I have had a total of 7 good days of that 28. And as I said before my sex life is really suffering. Even w/ the fibroids I had no compaints in that dept. Now it ends up being excrutiatingly painful before we are finished. Oh well just thought I'd vent a little and thanks for listening and good luck to you.
Unread 06-21-2005, 07:20 AM

I forgot to add that I also tried my chiropractor, but when he would do the stretching and then adjust my lower back it would feel better, but about three hours later the pain would come back worse than before and last for days. The nurse @ PM Dr. asked if I had tried chiro. or accupuncture anything like that and I told I had went to chiro and he asked if it helped and told I thought it made it worse and he kinda nodded his head as if he'd heard that before.
Unread 06-21-2005, 07:37 AM

Hi dixiet,
I had an endo specialist in March recommend a natural dr, and he feels this is all adhesions. The ND wanted to do accupunture directly into the scar, admitting that he has never done this before, but saying it "might" help. I have had enough, since the surgery was supposed to be a "breeze" GYN actually told hubby and me that most women heal just fine in 3 weeks, but take another 3 as vacation!!!! give me a break!!! So right now I do nothing. I do go to the chiro, but because he fears adhesions, he will only adjust my neck & shoulders, and he has a massage therapist that I see, and he does good work of at least breaking up knotted muscles, but he won't touch the abdomen either. I at least have to give them credit for being responsible enough not to touch what they can't fix!!!
Unread 06-21-2005, 11:47 PM
Pain also but differnt area

Hi, everyone. I am new today and was reading about your pain. I to have pain that has been present for 3 years now. I did not choose my hyst. I hemmoraged after a c-section. The Dr.'s first thought the problem was my bladder and went back in (through same incision just larger) and stopped some bleeders on my bladder. Six pints of blood and several hours later I still was not stabilizing. Dr. decided they had to go back in again. YES 3 surgeries in less then 24 hours. This time they went in vertically (now I have a big upside T on my abdomen). With every specialist you can imagine in the OR they decided to do a total hyst. After a total of 11 pints of blood, week in ICU and another week on the floor I finally was strong enough to go home. From the first clear memory I have had the terrible pain in my upper left side beside my breast. Right where your bra strap lies. I am unable to lay flat on my back. If I try the pain increases. Nor can I lie on my left side. I have seen several Dr's including a PM and have had every test imaginable (all negative results of course) with no relief or answers. I have been on so many different meds I feel like I should have been a pharmacist. The only thing they can think of is scar tissue and or adhesions. The thing that confuses them all is where the pain is located. It is not in my abdomen and I do not have pain with intercourse. Dr. tells me if they try to remove the so called scar tissue or adhesions that I run the risk of creating more and due to all the blood that was in my abdomen that the amount of scaring and adhesions makes it unadvisable to do a lap.
Has anyone heard of anything like this before? Any suggestions?

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