Sally, I'm so relieved someone else knows what it's like to feel ok for 30-45 minutes when you first get up and then feel that pain start creeping back in and increasing the more you move around.
Someone else mentioned that riding in a car made it worse. ME TOO! The jiggling of the car on the interstate makes me ache even more. I know it's awful for others to be going through the same thing, but goodness I'm so relieved to know others have the same symptoms. I'm finding it's so easy to doubt yourself.
Yesterday after I had time to think and talk to my husband (who was out of town), we came up with a game plan of sorts. I'll wait on the ultrasound on the 2nd of June, do that and see the GI doctor. Hopefully by doing that, at least they can rule out cysts (or see that is a problem) and the GI doctor can look at my records, CT scans and x-ray from April to see if he thinks it's IBS. I could accept the IBS thing IF after my GYN cut down the adhesions, my symptoms hadn't gone away for two months. I just find it ironic that I leave that surgery and go back to like I was before the hysterectomy - able to not add a ton of fiber to my diet and go like clockwork every morning.
I've already called my primary care and asked for a second opinion from another GYN not affiliated with the hospital I go to. My insurance told me this morning it is MY RIGHT to have a second opinion. However, the nurse practitioner who referred me back to the GYN refuses to give me the second opinion appointment until I have the ultrasound and see her afterwards. I can understand that, but they need to understand I've been in a great deal of pain since late April. By the time I have the ultrasound on June 2nd, wait to see her the following week - if she gives me the second opinion referall, it'll be another THREE weeks to get seen! My entire summer will be spent like this :(. I know I shouldn't complain because so many of you have suffered years, but goodness. Everything takes forever and in the meantime my life is passing me by!
Thank you for the advice on alternative techniques. My mother-in-law is into alternative medicine and has sent me a great deal of info on visualization. My problem is you have to believe in that sort of thing and at this point, I haven't been in this situation long enough to have given up on conventional medicine. I'm determined to find the cause of this - even if they can't fix it. If I at least know the reason then I can settle into finding a way to live the rest of my life this way and I will then look into counseling to handle the pain, massage and herbs. I just don't want to do anything alternative until I've exhausted my options with conventional medicine. I will keep your great ideas in my mind though and may have questions for you if I reach that point.
Thank you all again. My mind has been eased so much by being able to talk with you all and find people who understand. I appreciate your time, advice and encouragement so much!!
At Thu, 22 May 2003, Sally Grigg wrote:
>
>Dear Elaine, Your symptoms sound exactly like adhesions. When I would
>wake in the morning, after laying flat for hours, I would feel
>relatively little pain.
>After getting up and working a little while, it would start and get
>worse. I think the doctors know you have adhesions, but they don't know
>what to do about it. Please read past emails, the stories on the quilt
>and information on what other people have done. Anger used to make me
>feel worse,because I would clench up, but its better than depression and
>feeling like you're crazy. They are the
>ones lacking in knowledge, not you. Love, Sally
>
>At Wed, 21 May 2003, Elaine wrote:
>>
>>Saw my GYN today. Says its not an ovary problem, it's a GI problem. No
>>exam, clothes were on - and he listened around my belly button with his
>>stethescope - mashed around a bit. He spent a lot of time talking to me
>>(which I appreciate), but I left feeling as if I really wasn't heard.
>>So, I have no idea if I now have a cyst on my right ovary and really no
>>clue why my left side hurts and hurts worse after bowel movements.
>>
>>He suggested tri-something anti-depressants for "chronic" pelvic pain if
>>GI says nothing is wrong. I don't HAVE chronic pelvic pain:
>>
>>Had pain after my second c-section. 2 YEARS I lived in pain every
>>month. I was treated like a hysterical female and told "either the pill
>>or hysterectomy." Finally had the hysterectomy in Oct. last year -
>>adenomyosis. Ok, that'll hurt (scarasm). THAT's a reason for pain.
>>
>>After the hysterectomy, had bladder problems. My bladder was stuck to
>>my uterus. Camera in the bladder showed something sitting on my
>>bladder. Bladder was sore from being peeled off the uterus to begin
>>with - something sitting on it would hurt. Turns out it was my colon
>>pushing my bladder over to the right. Had a barium enema - that
>>corrected the problem with the bladder being pushed over after I pooped
>>enough for a football team since I couldn't go BEFORE all the stuff you
>>drink. Still had problems going to the bathroom. Had to "white
>>knuckle" it (what I call the bad cramps, sweating, not knowing if you're
>>going to poop or throw up - or both) every time I did go.
>>
>>Cyst found on left ovary. Still pain. Was told see you in three
>>months.
>>
>>THREE MONTHS I live in pain (this is now month four after the
>>hysterectomy). All through the holidays - so much for fun...I was
>>hurting EVERY DAY. I know this isn't news to you guys, you live it too.
>>
>>They go in to remove the cyst in Feb. Adhesions sticking my intestines
>>to my abdominal wall - or omentum the fat layer I was told today. "No
>>wonder you were in so much pain" is what he said when I woke up from
>>that surgery.
>>
>>No pain on that left side for almost 2 weeks after the surgery. Then,
>>little by little it creeped back in. Hey, I was going to the bathroom
>>every single day though - I wasn't going to complain.
>>
>>April, pain increases, can't go, did I mention PAIN? It's now the end of
>>May and NOT ONE DOCTOR HAS EXAMINED ME with anything other than a darn
>>stethescope. Only a nurse practitioner who suspected a cyst on the
>>right ovary and put me in for an ultrasound. I don't get to do that fun
>>trip until JUNE 2nd. April - June, pain and without any exam by a
>>doctor, any ultrasound, no CT scan - and all I keep hearing is darn IBS!
>>How the heck do they know that left ovary hasn't stuck itself to my
>>colon or my colon to my abdominal wall now or the right ovary doesn't
>>have a cyst too since it's sending nice shooting pains all into my groin
>>and thigh?
>>
>>Nah, it's IBS and if the GI doc says it's not, then I need
>>antidepressants. You know, last month I was so upset over this I might
>>have done the antidepressant route. This month, I'm so ANGRY over being
>>dismissed, talked to as if I'm unable to make decisions and bounced from
>>one physicians assistant, to a nurse practioner, to finally getting to
>>see my GYN and being told to see a GI doc, I want to SCREAMMMMM! And -
>>cause great havoc by writing letters to bosses when I finally find out
>>what the problem is and these people have let me suffer for months :(!
>>
>>So, there you have it. Chronic pelvic pain when I've only had pelvic
>>pain TWICE before in my life and both times there was a reason. IBS,
>>but if not IBS, then I need antidepressants. WHAT do I do now??
>>
>>Oh and my doc doesn't think adhesions. Adhesions hurt all the time he
>>said. I wake up fine in the morning. NO pain for the first 30-45
>>minutes. Once I'm up and getting babies ready for school, dogs out and
>>cooking breakfast I start to hurt. By the time I have to cook dinner at
>>night, I'm in so much pain it's in my thighs like when I had my period.
>>I'll mention this is how I felt while waiting for them to remove the
>>cyst after the hysterectomy. But nah, it couldn't be adhesions. I'm 31
>>years old, in good health besides THIS atrocity, and by the time I walk
>>through walmart I'm hurting so bad I just want to curl up in a bawl.
>>Nah...I need antidepressants.
>>
>>Anyone else been in this situation and have any words of encouragement
>>or experiences to share? I'm NOT depressed, I'm finding I have a rage of
>>anger growing inside though lol.