MAMADOVE has question about Fibro and Endo

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Nov 21, 2006.

  1. MamaDove

    MamaDove New Member

    Many of you know that I just went through a hospital stay for rectal bleeding and pain and swelling in my mid-section that stumped the doctors...It was deemed a Crohn's attack and I am still suffering from some aspects but able to sit up now and look for answers...

    This morning came as a shocker...The fresh blood after 3 bm's along with the onset of my period which was burgundy in color (sorry for the graphics but it must mean something) all this while I am still on Prednisone and Cipro...Now aside from the burning in my lower right belly, ovary, hip and inguinal area (crease of leg and belly), I feel less swollen and less 'sick', like the start of my cycle replaced the fullness I was feeling...

    From day one when they removed a 4lb. mass on my left side, my health has gone downhill...As of today, this minute, I am convinced that my main problem is coming from endometriosis involving the bowel...I had never been aware, or told, that my cycle could bring on rectal bleeding but when I told my gastro last month, he admitted that many woman are complaining of this lately...

    I go back in tomorrow for a sigmoidoscopy to determine the cause of the 'fresh blood' and after looking up many things today, discovered he could also determine if this is endo related...Most woman start with Endo, possibly get misdiagnosed with Ulcerative Colitis and/or Crohn's (me) have trouble while on all the drug trials to stop teh bleeding, pain and most of all swelling and all the while its undetectable/undiagnosed endo attaching itself everywhere else...After this morning, the relief I feel is unbelievable, I was able to help make dinner and stretch to reach a dish for the first time in months..

    My ob/gyn is getting involved too, after Thanksgiving of course...Most likely a laparoscopy to 'look' in there...

    Okay girls, any advice for me???

    Love to hear from you!!!
  2. mollystwin

    mollystwin New Member

    I don't have any advice, but wanted to say that I hope you get to the bottom of this! I'm glad your a bit better, you've been through quite a bit of trama!!!

    Hope you have a great holiday1
  3. munch1958

    munch1958 Member

    You are not ALONE! I had (stage 4) endo in my recto-vaginal septum. It was removed by Harry Reich, MD. He is a top notch endometriosis surgeon (offices in Shavertown, PA & White Plains, NY) during 3 separate surgeries in 1991, 1992 & 1993. I have been pain free (and endo symptom free) ever since my endo was surgically removed. The doctor must remove deep fibrotic nodules to remove the endo and the pain!

    Get your medical records and find out if you have an obliterated cul-de-sac. Do you have a pathology report on the mass that was removed? Was it a chocolate cyst? Do you know what stage your endo is? Do you know if you have nodules on your uterosacral ligaments?

    If it is determined that you do have rectal or GI endo I would highly recommend that you see a surgeon that operates on the toughest cases. This means traveling because INMHO the average GYN can not remove this kind of endo.

    My biggest clue that I had rectal endo was extreme knife like pain with BMs. The kind of pain that makes you want to pass out, scream and grab onto things. OK at home but not so great in public washrooms! People do tend to wonder what are you doing in there?!


  4. MamaDove

    MamaDove New Member

    had a terrible night and now i wait for the sigmoidoscopy this afternoon...

    i stopped all my meds cause i really feel poisoned, i was up all night with bone pain, even the back of my head where it touched the pillow was like red hot on fire...my skin is super thin from the prednsione and the wierd thoughts that are going through my head are enough to drive anyone nuts...

    i cant believe this is happening while i live in maine..i am nervous...at least while in ny you have options...here its like, good luck, better luck next time...the docs i do have took me time to find and have done right by ME so far but the more i hear about the cases that go undiagnosed til its too late and how they prescribed 14 different meds for something that caused something else without looking into what I would see as 'abvious'...I get more nervous...you should hear the horror stories I hear at my support group meetings, its all what most of us have been through AND WORSE...thats why we meet, to find some answers and understanding...

    okay, must start my evac stuff for my tests, i hope i will be glad to get whatever else is in me, out...

    gee, this is a long bout of feeling like i a not gonna make it...pray for strength...by now i need it...

    love to all and a blessed thanksgiving too~Alicia
  5. munch1958

    munch1958 Member

    Good luck with your sigmoidoscopy today! Sending you healing vibes and prayers for a good outcome. The rectal bleeding could be from something as "simple" as 'roids since such lovely GI problems go hand in hand with FM. You know your own body best so if you have a "gut" instinct about what's probably wrong with you -- you are probably right.

    Rarely does bowel endo penetrate through the entire bowel wall to cause this kind of bleeding. It usually grows on the outside surface of the bowel wall in the abdomen but it CAN happen. If this is your diagnosis then I suggest you seek out a top endo surgeon.

    Yes, I know all about FM & endo horror stories. I ran an endo support group myself and was the president of the Chicago Chapter of the EA for many years. We had about 550 members at the time. I've personally taken thousands of phone calls from women with endo. Typically, I saw and heard the worst case scenarios at support group meetings.

    I live in Illinois and after exhausting every endo doctor in the area, I made the trip to PA to get help. Chicago just didn't have a national caliber bowel endo expert that could remove my bowel endo. I learned this the hard way after being everyone's treatment failure. I've had a total of 6 endo operations and no one was getting to the root of the problem.

    With a 20+ history of GI disturbances, I've had many UGD's and colonoscopies over the years. I understand your anxiety and fears. I still have the urge to barf whenever I see another bottle of bowel prep. Please let me know what they find.

    [This Message was Edited on 11/22/2006]