Re: What do I do now?
From: heather hetrick (motega3@msn.com)
Sat May 24 23:45:08 2003
Elaine,
I have experienced the same thing, you are not alone. The more movement
causing more pain makes sense because adhesions are sticking things together
that should NOT be together preventing the proper flow so to speak. This
was not told to me by the doctors I have seen but the same thing happened to
me. My big problem this last time was I couldn't sit. To eat a meal, to
drive, to work, to sit and read my kids a book.
My history includes a cyst on the back of my ovary for 13 months (since it
couldn't be seen in an ultrasound no one would go in) I say a different GYN
every month, 3 trips to the emergency room. I was told I just suffer bad
cramps, loose 60 lbs and change your sexual position, we can't find an
infection but here are some antibiotics. After I found a doctor who went in
and found the problem I did call a lawyer, you can't get them on
malpractice, but you can mention misdiagnosis if you choose to go that
route. About a year after the removal of the cyst and some adhesions I
started having pain again. A doctor wanted to go the infection route again,
the next day I went to another GYN who said there is no infection and agreed
to go in at the end of the week. He found endometriosis, adnomyosis, and
the right ovary still hurt so I said take that. Whether it was because the
cyst had been on there so long I don't know. I refused to pay the other
doctor his co-pay on the grounds of misdiagnosis, never heard from him
again. Strange huh?
I know that adnomyosis is painful and for that reason I will never be sorry
I had the hysterectomy. for that matter endometreosis isn't that much fun
either.
I had 3 years after the hyster with no problems then Aug 02 I started having
pain. I have had 3 surgeries since October, the first on with the scope but
he couldn't reach all the adhesions, after the second surgery I had to find
a new GYN because he said I don't know what to do with you anymore. This
last one went in May 2 and after removing more adhesions (and finding that
my left ovary is surrounded by adhesions and pulled back into my bowels)
suggested a physical therapist, more specifically myofacial massage to keep
things stretched out. I have only had one appointment with her so far but I
mentioned problems with my bowels and she didn't blink an eye. I also told
her that I have to hold my peritoneum up in order to have a bowel movement,
she said that is probably the colon dropping from the uterus not being there
any longer and we talked about my bladder, fortunately that isn't
dysfunctional yet, but was painful the first urination of the morning before
this last surgery. I will let you know how I make out with the massage and
you can see if there are any in your area. I can already feel the adhesions
coming back after only a few weeks! How depressing!
I have also been told it was all in my head. When the doctor stared in
about anti-depressants I started to steam. When he ask me what treatment I
wanted to seek, I told him that he was going to write me a referral to see
some else for a second opinion, turned out I was right. I have also been
giving the IBS route.
I am also very angry about everything I have been put through and trying to
deal with that constant pain may be with me until SprayGel comes to the US
and US doctors know how to use it. I have 3 children, 4 dogs, a job, a
wonderful husband. I want to enjoy them all. How am I supposed to do that?
I am sorry to have rambled but it is almost like you and I are living the
same life! IF your insurance lets you find another GYN, one that takes you
seriously. I know states and insurance's are different. Because a lot of
the doctors wanted to send me to a GI specialist I quit mentioning my bowel
problems to them to get them to take me seriously, I just stuck to the pain
part. But it is strange that the bowel problems straighten out after the
adhesions are removed, but we don't know our bodies, right? Know that you
are right and don't let them control you, just because they have a degree
doesn't make them right. Use the anger! but in a nice way to their face.
Sorry those are the only suggestions I can make for your (and my)
situations.
Heather (PA)
>----- Original Message -----
From: "Elaine" <noemail@email.com>
To: "Multiple recipients of list ADHESIONS"
<adhesions@mail.medispecialty.com>
Sent: Wednesday, May 21, 2003 6:44 PM
Subject: What do I do now?
> 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.
>
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