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Re: Misdiagnosis?
From: lorimjc (anonymous@obgyn.net)
Tue Sep 23 10:05:56 2008
I thought it was kidney stones as well but when they did the CT Scan I
was told that it would have shown up then. All my labs came back fine
with no signs of infection. The pain isn't so bad that I can't
function...but its there...all the time. I don't know if the dr is that
well educated with endo. The scar tissue comment makes sense. I did
have my gall bladder out in 97 just prior to my tubal. But who knows.
I get such a sense of frusteration when trying to describe my pain and
how it leaves me feeling. Worst part is that i'm battling depression &
anxiety issues. Stupidly I 'cut' when I'm feeling that I'm losing
control and because i have kids, I cut in places that they won't see. My
belly has been the place that i've put a few small cuts. Not deep, not
lots but when the dr in ER saw the few I had, he quickly changed his
tune from concern to "attention seeking". So needless to say i'm scared
to pursue this further for fear of things being swept to the sidelines
due to my mental state!
Thanks so much for all the comments and advice. Nice to know I'm not
THAT crazy! LOL
At Tue, 23 Sep 2008, Candace wrote:
>
>Yes, while kidney stones can make you double over in pain, for some
>people it doesn't. My first one I had my entire body in the seat of the
>wheelchair. I wasn't touching the arms or the back. However, my
>subsequent ones were not that bad. Yes, they were extremely horrible,
>but I was not doubled over. :). Still one of the worst things I've
>ever felt in my entire life though.
>
>I may possibly have another one at this moment, and luckily, I have a
>sit down job. If I was still serving there's no way I could work, but
>as of right now. I have a heating pad in my cubicle, and I am already
>on percocet (dr. agreed with me and took me off of morhine) I feel
>exactly like I did with all of my subsequent kidney stones. Pain that
>comes in waves with a shot of nausea.
>
>I hope this isn't what she has, but with the pain being near her ribs,
>it is possible.
>
>At Tue, 23 Sep 2008, tnkerbl wrote:
>>
>>At Mon, 22 Sep 2008, anonymous wrote:
>>>
>>>Was the doctor familiar with all types of endo? If he/she is not very
>>>versed in endo its very possible it is there and he/she just missed it.
>>>Most ob/gyn only look in the common areas endo is found such as the cul
>>>de sac. It could be possible you also have adenomyosis or endo in the
>>>uterine wall muscles. I had the debilitating right sided pain too and
>>>when I had excision last month it was all over my abdominal wall. Its
>>>possible that scar tissue and adhesions could be the culprit or a cyst
>>>on your ovary. As far as endo going away Im not sure I would accept
>>>that as the drs explanation. I know endo can go into "remission" so to
>>>speak during pregnancy due to the high progesterone levels.
>>>
>>>Is there another doctor you can see in a nearby town? If so I would go
>>>there or try to find a endo or pelvic pain specialist. Also did they
>>>test you for IC? Interstitial Cystitis? It can cause pelvic pain as
>>>well. As far as the bowel issues another poster mentioned I dont think
>>>that is the issue unless your experiencing diarrhea/constipation issues
>>>as well. Kidney stones could be a culprit as well but with kidney
>>>stones you would be doubled over and begging to die LOL atleast I was.
>>>It was the worst pain I have ever felt. I would take 10 c sections
>>>before I would want another kidney stone.
>>>
>>>I would deffinately find another doctor. Do you have pics from your
>>>surgery? If so look and see if you see any shiny spots which is how some
>>>endo presents. Also the pelvic organs will look red and inflamed not a
>>>pink salmony color normal organs are. Look for dark red/powder burn
>>>looking places as well as endo presents like that too.
>>>
>>>Im sorry your having to deal with pain and Hope you feel better and get
>>>some real answers soon! Take Care!
>>>Niki
>>>
>>>At Mon, 22 Sep 2008, Candace wrote:
>>>>
>>>>Did they test for kidney stones? Also, unless he's experienced he may
>>>>not see clear endo, which does exist.
>>>>
>>>>At Mon, 22 Sep 2008, bren wrote:
>>>>>
>>>>>I just had a lap this past Thurs & w/o knowing the results & being home
>>>>>recovering, been having a lot of time on my hands posting on this forum,
>>>>>giving & getting advice, doing research, etc. Anyways, I'm glad to hear
>>>>>that you were able to have 2 wonderful children w/ endo. It sounds like
>>>>>since your endo/adhesions were "cut" out, which is known to be more
>>>>>successful than lasering/buring it out, your endo has not grown back
>>>>>(this is what it sounds like to me)..There is no cure for endo & there's
>>>>>always a high probability for it to grow back (especially w/ just
>>>>>burning/lasering it) & @ times come back worse along w/ something extra
>>>>>such as scar tissue from previous surgery(ies). I know of someone who
>>>>>didn't have the debilitating symptoms of endo & had surgery to get it
>>>>>removed & later had kids & after never had problems w/ endo again, so I
>>>>>know of "success" stories as well. It's just mind boggling how this
>>>>>disease can be so debilitating for some & others who don't even have
>>>>>symptoms besides infertility & how it doesn't matter what the extent of
>>>>>the disease is for correlation to the extent of pain one experiences.
>>>>>For some reason w/ women's pelvis pain or disease, lots of time I hear
>>>>>"it'll be better after you have kids", which I find ironic-maybe has
>>>>>something to do w/ hormone levels changing when u get pregnant &
>>>>>afterwards since it seems like hormanal imbalance seems to be the cause
>>>>>of a lot of women's pelvis pain &/or any disease going on., Well, the
>>>>>pain that you have & from what the new Dr. said how no endo was found,
>>>>>doesn't mean that you were misdiagnosed w/ endo in the past or that you
>>>>>don't currently have pain. It sounds like since you've had surgery
>>>>>before, you probably have scar tissue from the previous surgery that
>>>>>could possibly of gotten larger or spread to other areas that could most
>>>>>definitely cause pain. I had my appendix removed in 2003 & later had
>>>>>pain in the same area & close by areas as well & I was told by doctors
>>>>>that it's always possible that scar tissue can cause pain. Even from my
>>>>>lap a few days ago, altho' I don't know my results, I remember the
>>>>>doctor telling me that I had quite a bit of scar tissue that spread from
>>>>>my appendectomy, which is one reason for some of my pain. I've also had
>>>>>bowel issues eversince my appendix was removed (irregularities & pain).
>>>>>Did you ever get the update on papsmear & ultrasound? If you did & if
>>>>>they haven't called you, that usually means that results came out
>>>>>normal. This doesn't mean that you are imagining your pain. Obviously,
>>>>>somethings not right if you are having pain & if tests come out normal,
>>>>>it just means u need other tests done, but it is very likely that you
>>>>>have scar tissue from your previous surgery that is causing your pain or
>>>>>maybe bowel problems such as constipation or IBS or other abdominal
>>>>>problems that causes pain..I would try to see a GI Dr. as well along w/
>>>>>another Obgyn specialist or see your primary care Dr. to get referrals
>>>>>and any other tests ordered. Hope this helps.
>>>>>
>>>>>At Mon, 22 Sep 2008, lorimjc wrote:
>>>>>>
>>>>>>I was diagnosed with moderate endo in 1992. A year later I got pregnant
>>>>>>with my first child and my second child in 1997. In November of 97 I
>>>>>>had a tubaliagtion and at that time my obgyn said there were 'some
>>>>>>adhesions' which he cut and some spots which were cauterized. Flash
>>>>>>forward to 2006. My pains became extremely uncomfortable again and I
>>>>>>found myself at another obgyn in a new city. He suggested a scope which
>>>>>>I agreed to as previous ones did aliviate some of the pain before. He
>>>>>>went in, did the scope and told me a week later that there was no
>>>>>>endometriosis present.
>>>>>>Can it go away? I felt so negated and have not returned to the obgyn
>>>>>>since. (We only have two in this city and the other is not
>>>>>>recommended). Again, I'm dealing with pain, having gone to the ER this
>>>>>>week & having a CT Scan done to rule out appedicitis and any bowel
>>>>>>concerns. I have the pain through my right side. It feels like
>>>>>>something pulling from my ribs down to my hip. I feel like a total nut
>>>>>>job looking for attention, which I'm not.
>>>>>>On a side note, my family physician sent a request to this particular
>>>>>>obgyn SIX MONTHS ago for me to get a pap & ultrasound....still haven't
>>>>>>heard anything.
>>>>>>Any suggestions?
>>>>>
>>>>>--
>>>>>Bren
>>>>>
>>>>--
>>>>Candace
>>>>
>>>>Wishing for pain free days for all!
>>>>
>>Thanks for the advice, Yes my Dr. specializes in that area of practice.
>>I had a D&C in july and was sent to pathology and thats how he diagnosed
>>me with adnomiosis. then sent it off again after my hystorectomy and
>>thats how he found I had endometriosis, and yes thank God for my two
>>children. I lost 10 babies though in the process and had very high risk
>>pregnancies. I will ask my dr tomorrow when I see him about kidney
>>stones. But the pain is identical to the pain I had before all in my
>>right side abs and in my lower back and down into my legs.... I really
>>thankyou for your advice and I will look into other possiblities...
>>thanks again TNKERBL
>
>--
>Candace
>
>Wishing for pain free days for all!
>
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