At Wed, 23 Apr 2003, Nina wrote:
>
>It is so comforting to hear from someone else who can't even breathe
>because of the pain. When I tried to explain it to my OB (who I adore
>by the way and would follow to the ends of the earth for simple things
>like pregnancy) I told him it was that I simply can not get a decent
>breath. I get out of breath from even putting on my shoes. Mind you I
>am 5 feet tall, weigh 115 pounds, and have been figure skating for 5
>years. Of course I have had to stop "really" skating the past 20
>months, and now have had to pretty much give it up all together. Either
>I had too much back pain, I was too exhausted, or I couldn't breathe on
>the ice. Two years ago I could still do backbends. Now no flexibility
>at all. Still "force" myself to do yoga to atempt to maintain. Amazing
>how tired you get when you have a hard time breathing and or are in
>discomfort/pain all the time. Hasn't been that bad since the second lap
>yet, but it was only 2 weeks ago. Have a very understanding boyfriend
>and family. But I know they just can't understand that on most days I
>am so exhausted afer my shower in the am that all I want to do is go
>back to bed. Not depressed, just exhausted.
>
>Another problem is that I can not find a specialist who is covered by my
>insurance. I call the insurance company and they say they don't have
>acess to that info. Called every OB on my list and they say they can't
>release it. How are we supposed to find help?
>
>Final thing is this. I never had any abdominal trauma at all. No
>ovarian cysyts, no appendectomy, no car crash. I grew up very ill so
>never had childhood accidents. The only think I can think of is that
>there is some bizarre connection between all my health problems. I was
>diagnosed with Celiac Sprue at 9 (gluten intolerance). Have asthma and
>severe seasonal and food allergies. Had 6 kidney stones in a 5 year
>time span. Am so sensitive to steroids and any painkiller over tylenol
>or motrin that I have been hospitalized for dehydration several times.
>And now this. Am not a hypocondriac contrary to my loving brothers
>theory. Every single time I have been sick it has turned out to be very
>real problem. Can a persons body just be that bizarre that it seems to
>reject everything, even itself?
>
>Thanks for letting me vent.
>
>--
>Nina
>
>At Tue, 22 Apr 2003, Joyce wrote:
>>
>>I also had adhesions with no previous surgeries. My Gyn was also
>>expecting endo but when he did the Lap, he found adhesions on my Colon.
>>He lysed them and they have not come back but I now have pain in my
>>back, flank area, that started out feeling like kidney infection.
>>Numerous tests show kidney to be ok. I suspect adhesions on tranverse
>>colon (have bad pain about 30 minutes after bowel movement) and
>>diaphragm (am short of breath and when pain gets bad it hurts to
>>breath). Also at the same time my back pain started I got an asthmatic
>>cough. I've had back pain and cough now for over 5 years. Cough is
>>controlled pretty well with asthma meds but this back pain, can't find
>>any help for it. I got a nerve block with steroids, and though the
>>doctors do not believe this, I hurt worse after the nerve block. Now it
>>hurts to touch my side as before it did not. I am receiving physical
>>therapy to try and strengthen stomach muscles (I had 4 laps in all). I
>>also had Pelvic Congestion on left side pelvic area before I had a
>>hysterectomy last year. I'm 38, no kids, but could not take the Pelvic
>>Congestion anymore. It's horrible. They hyst took care of that thank
>>goodness, but sometimes I wonder if my back pain has to do with enlarged
>>veins since I had such large ones in my pelvic area and they caused such
>>pain. I don't have a clue where we go for answers. I deal with this ok
>>most of the time. Work 40 hours most weeks, come home and rest. All
>>the extra doctor appts and physical therapy appts. make it hard to get
>>40 hours, have to work late a lot of times to make up time, which
>>doesn't help the fatigue, but we do what we have to do. I'm at a point
>>where I'm just soooo tired. I understand what you are going through.
>>It's not easy. I find reading this board helps me to know I'm not going
>>crazy. The doctors sure make me feel this way. As for the
>>"spontaneous" adhesions, I think mine may have come from ovarian cysts
>>rupturing.... I always had ovary pain on left side where my first
>>adhesions were found. Well didn't mean for this to get so long, just
>>reading your post and all the others just sounds so familiar and it just
>>seems like there is nowhere to turn for help.... I hope we can all
>>found the help we need one day.
>>
>>--
>>Joyce
>>
>>At Tue, 22 Apr 2003, Nina wrote:
>>>
>>>Started "getting sick". About 4 years ago. OB tried me on all
>>>conceivable oral contraceptives in order to control what he anticipaited
>>>was Endo. Then 20 months ago appetite was so poor and pelvic pain so
>>>bad went in for Lap. He was surpriesed that instead of Endo it was
>>>normal scar tissue. He found 3 "massive" adhesions binding my bladder
>>>to the pelvic floor and wrapping the bowels. Problem is I had never had
>>>previous surgeries. About 1 month later again started feeling that oh
>>>so familiar tightness in RLQ. Went in for 3 mo F/U and he told me that
>>>it was not possible to grow back so quickly. 6 months after Lap went
>>>into IBS crisis and have been dependent upon Miralax daily ever since in
>>>order to maintain bolwel function. Around the same time began having
>>>excrutiating upper back pain that had such a crushing sensation that it
>>>would make me sick and affect my ability to breathe. Pain would wrap
>>>around to my chest. During the entire time flipped from one rx to
>>>another to control growth and symptoms. 2 weeks ago went in for my
>>>second Lap in 2 months. Results were 2 hand size adhesions that had
>>>adhered my R and L lower bowels to the abdominal wall, and a 2 handed
>>>size piece that wrapped from the colon, around the intestines and to the
>>>ovarian tubules.
>>>
>>>It is now 2 weeks post, and I am having RLQ cramping again. The other
>>>concern is that the back pain has not really subsided since the lap. MD
>>>at F/U appt said it is because "they had to beat me up inside" to remove
>>>tissue and tio give it 4-6 weeks.
>>>
>>>First question is: Is it possible for adhesions to form further up the
>>>back where they can not find it with a lap?
>>>
>>>Second question is MD has recommended Lupron or Merian (an IUD) or Depro
>>>to put me into early menopause. I am 30 years old w/ the intention of
>>>getting pregnant at some point in the future, but do not want to have to
>>>rush into it just because of adhesions. I have no chidren yet and have
>>>been dreaming of mine since I was 9 years old. Is artificial menopause
>>>the common solution to spontaneous and unexplained adhesions? Until we
>>>make a decision I continue on Miralax and Ortho
>>>
>>>Any help would be appreciated
>>>
>>>--
>>>Nina
>>>
>>--
>>Joyce (other posts may have been, BJ or KJ)
>>
-- Joyce