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IBS or Endometriosis
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IBS or Endometriosis

Hi,I'm 29 yrs old and for almost a year been looking for answers and relief from chronic pain (abdominal,rectal,pelvic pain) along with rapid 100lb weight loss,fatique,increase gas (trapped,"rumble" constantly) appetite loss,low grade fevers and leg pain.Have had IBS for years,but never this severe with pain lasting for so long.May'06 had colonscopy,hida scan,all normal,endoscopy,mild acid reflux,Aug'06 laparscopy,no endometriosis.Oct'06 appendix almost ruptured,thinking it was cause of pain..pain continues! week later 5cm complex cyst (1.9cm now)found on right ovary,complicated by hemorrhage or infection,dr dont think it is abcess (abscess) from appendix,pcp say's pain is IBS,new gyno think it is endometriosis that was "hidden" at time of first laparscopy,any other ladies experience this? also had ca125 test,level was 4,to rule out ovarian cancer.
    Does IBS/Endometriosis occur together? Bowel movements are cry out painful,alternate,mostly constipation,and after bm still feel pressure and pain(takes forever to complete bm)I'm never pain free and it is effecting my life.I'm interesting in knowing how many woman been told it was just IBS when in fact it is endometriosis.Sorry so long,any input appreciated.
             Stephanie
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11 Comments Post a Comment
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82861_tn?1333457511
Hi Stephanie!  Yes, lazy doctors love to diagnose abdmoninal problems as IBS, collect their fee, and shuffle you out the door.  I have been told it was IBS when the problem was really: endometriosis, gallbladder, appendix, bowel adhesions, and more adhesions.  LOL!  Docs are not Gods, and sadly, it seems to be getting more and more difficult to find docs who actually listen to what the patient has to say.

It is entirely possible that endometriosis implants were missed on your last surgery.  Endo can be notoriously difficult to treat.  Some women even end up having a hysterectomy due to endometriosis: some women have great results; others don't.  In addition, the endo implants are very irritating to the structures they are on, and that inflames tissues and can cause scar tissue to form.  If the adhesions form on bowels, you will have IBS symptoms and pain.  Endo-related adhesions can pull ovaries and tubes out of place, causing pain.  My sister tended to get implants on her bladder, and she had pain and terrible urinary problems.

Anyway, were I in your shoes, I wouldn't settle for the IBS diagnosis - particularly if the usual IBS remedies are not helping.  Head back to the gyn and ask some more questions.  It just might be worth going back in and having another quick look.
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148354_tn?1211237506
Hi,thank you for your reply,I appreciate it.You are very knowledgeable and a help to everyone on here.What were all your symptoms? was it on daily basis?I'm not settling for "IBS" theory anymore.It's been a year of pure living hell,obviously something else is going on.I also have  partial rectal prolapse which I suspect endometriosis plays a role (uterus is tipped against rectum)makes sense to me endometriosis behind uterus, for years dealt with chronic constipation and difficult bm's,I live in the bathroom! sorry to much info,lol,wouldnt dr during laparscopy look behind uterus,or do they just look on outside,obvious places? due to this pain I live on ensure,dread eating because of discomfort/nausea afterwards.At 29 I feel like I'm living like a 80 yr old,most of time housebound.I dont have kids but want some.I'm worried if it is endometriosis if I will ever be able to have any.
          Ok I better get going before I write a chapter! just needed to vent,thank you!
                   Stephanie
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82861_tn?1333457511
Hi again!  Yes, the many years I dealt with endo, the symptoms were always present, but worse during menstruation.  A compentent gyn surgeon should be able to check all around the uterus, cul-de-sac (way down by the rectum) and everywhere in the abdomen.  I had (and still have) bowel adhesions, which act like a rubber band and slow down the movement of waste, so I had constipation symptoms as well.  It wasn't the "usual" constipation with hard dry stool - it simply wasn't getting through my intestines.  Don't know quite how to describe the difference, but that's about the best I can do.  As far a sex went, forget about it!  It just hurt like fire.  :-)

I've been on a primarily liquid diet for several years, and while it is possible to maintain good nutrition that way, it sure does get boring.  Most of the time I don't think about it any more, but once in a while I really do want a normal meal - like a big fat steak!  

A year of accepting IBS is, in my opinion, too darn long, and a cop-out on your doctor's side.  Time to get aggressive and get to the bottom of what's going on.  Endo and adhesions are so frustrating because they don't show up on any tests.  All you can do is keep a list of your symptoms, research them, and hope you have a good doctor who actually listens and takes the time to think.
Now go get 'em!  :-)
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148354_tn?1211237506
I'm gonna get em alright! I go to gyno tomorrow so hopefully he will listen,he seems compassionate and great dr ,so this time I hope to get somewhere.
  What kind of liquid diet have you been on? I drink 2-3 ensure a day but it is getting nasty! if I eat any meat (had steak few days ago,big mistake) it seems to slow my digestion down so I stick to soft easy  to digest foods which makes getting enough fiber hard(learning to like oatmeal)I'm worried being so long on liquid diet (9 months)my stomach will forget to how to work..lol,not sure if that is possible.I went for 3 months just on ensure when I started to gradually eat solid food I was sick for days.
  I'm not sure if what I have is true "constipation" I will occasionally have hard stool.I usually go daily,but have difficult time passing stools ( even soft bulky stool) it get's "stuck" so the result is prolonged sitting on toilet,I cant get up.laxatives/fiber dont help,so I know this isnt normal.I have strong feeling it is endometriosis,epseically rectal endo.
  Did you hurt worse after bowel movement?
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82861_tn?1333457511
How did the gyn visit go today?  Hopefully you at least have a plan for investigating your symptoms, if not outright answers.

As for the liquid diet, I usually make my own smoothies with yogurt, different fruits, and a powdered protein supplement like weightlifters use.  Over the years I've figured out the proportions that work for me.  Also, those Nouriche smoothies from the grocery store are pretty good for something different.  Obviously, I still have to supplement with multi-vitamins.  I never could tolerate Ensure - makes me feel almost worse, and has such a vitamin B flavor to it that the smell just gags me.  LOL!  

If you really want to get hard-core with it, get one of those Juiceman juicers and experiment with different veggie juices.  Carrot and beet juice is actually pretty good!  I don't do it very often because it's really kind of messy, but at least I get some different nutrients in my system.
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82861_tn?1333457511
What fabulous news that your gyn is willing to go in for another look!  Is your surgery scheduled yet?  You might consider asking the gyn to have a general surgeon assist to look at the gallbladder and other upper abdominal structures.  Hold on to that in the meantime: at least with the surgery you'll know that every last thing that could be checked WILL be checked.  Hang in there kiddo!
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148354_tn?1211237506
Hello! the gyno visit went good,going to have another laparscopy to get a second look,had to kind of argue about it.He suggested another colonscopy (had one may'06,normal)I stood firm (=
   Also experiencing middle/upper right abodminal pain that radiates to chest and back...greeeeat! woke up with it today with fever/nausea/chills,finally eased up,asked gyno about it,thinks could be gallstones,I wouldnt be surprised,rapid weight loss (100lbs) he said could cause it.Talk to my pcp and got the it is "IBS" again...grrr! I was in hospital for 3 days in April'06 for suspected gallbladder pain,after ultrasound/hidascan surgeon said no gallstones and gallbladder was fuctioning normal,so sent  me home,IBS theory.10 yrs ago had gallbladder attack after eating pizza.Now I have to pull teeth with dr again over this.
    I'm going to try your liquid diet,this ensure is bad! I'm so tempted for a pizza! dont want to end up in er tonight so I will stick to soup. ty for letting me vent,helps to know I'm not only person that has gone through this,take care
               Stephanie
            Stephanie
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148354_tn?1211237506
Hi! how are you? I have to call gyno office this week to find out when laparscopy is,waiting for insurance to approve it.
    This pain and symptoms are driving me crazy.Now I'm second guessing myself and wondering if I even need another laparscopy! but IBS alone should not be this severe/painful for so long,and this complex cyst I had for 5-6 months prob should be checked out. I'm a whimp when it comes to surgery! after having 2 abdominal surgeries I shouldnt be as scared,I'm a big baby when it comes to surgery.Gyno also suggested another colonscopy,to be honest Id rather have laparscopy,I was awake during my first colonscopy and I never want to repeat that again..I was horrified! lol...
     Given my first colonscopy was normal (may'06)I doubt it is all just a bowel problem or anything has changed,I see no reason to repeat it,unless laparscopy reveals nothing then I have no choice,eh? ahhhh fun!!!! lol...have to keep sense of humor or go nuts literally..
                            Stephanie
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148354_tn?1211237506
Hi,having issues with this site not able to see all the replies,must be new format? still getting use to it!
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I have severe endo - about 20 yrs now.  I am almost 38 and have had several laps and a partial hysterectomy 2 yrs ago.  The surgery went well but my incision stayed open for 12 weeks.  It was horrible!  I had a colonoscopy before my hyst and it was fine.  After I finally healed, I had aweful pains and bloating every month.  Of course, 3 Dr's said IBS was the cause but they couldn't find meds to help me.  I was tired of hearing the IBS story and found
another Dr who did a sono and found cysts on my ovaries again.  I have since had another intravaginal sono and my Gyn says it's time for the ovaries to come out as well.  I did have a CA125 test and it came back at a 48.  I am very freaked out about having surgery again but my gyn doesn't seem to be too worried.  He says the CA125 test can be elevated by a reoccurance of endo.  I am wondering if I should find a gyn-oncologist to have more testing OR go ahead and have the surgery and find out then what I am dealing with.  I am so scared and am confused about how to handle this.............any advice?

Thanks!
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3135783_tn?1342799221
Stephanie my name is stephanie and have the exact same symptoms. Did they ever figure out the problem
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