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    Old 06-01-2004, 08:31 PM   #1
    hello_kitty_777
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    Question Endometriosis Help Plze!!

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    Hello. I have had endometriosis since I was a teenager. I am now 26 years old. I have had 2 laps. done because of it. My first one I was under for 3 1/2 hours. My second one they found no endo. I have tried the lupron-depot twice and numerous birth control pills. I have horrid periods. Never know when they're coming or going or how ruff the ride is gonna be. I have been experiencing something I call intestinal pain because it hurts in my intestinal area. I also get a horrible burning stabbing pain under my right rib cage. I have heard a lil bit about "adhesions" from laproscopies. I did have a CT done and they did find something that they called adhesions on my intestines but did nothing about it. Said it was normal from my surgeries, but my surgeries were over 3 years ago, and I am in serious pain. I can barely keep solid food down. Cannot tolerate any fried or greasy foods or spicey. Sometimes it feels like my intestines are coming out my back. I also have diareha/constipation; usually either black or light colored. Any advice or suggestions would be helpful!!! Tired of hearing "IBS" we all know what that really stands for BS.


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    Old 06-20-2004, 08:15 PM   #2
    Lisa T
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    Exclamation Re: Endometriosis Help Plze!!

    I realize you posted this quite awhile ago, but I was trying to find out info about endometriosis when I came across your post... I haven't posted on this part of healthboards before...

    I went to my doctor for the pain under my ribs like you are describing!!!! He did a stool culture and I had some type of bacteria and he gave me some antibotic to take and its gone!!!!!!! Took the constipation and diahiria away too!! Hopefully this will help you if you haven't found anything out, good luck!

    I go this thursday for an ultrasound to see if it shows anything. He seems to think I have endo, but wants to check for cysts, will endo show on the ultrasound??? Can't find that answer anywhere! Having terrible pains around right ovary area, swelling in my tummy, really heavy periods(irreagular), and I can't sleep for the pain. But it sounds as though if I had this my pain should be more present at cycle time, but mine is all the time. No relief!!!! And I have completely cut my Husband off (lol) It just hurts way to bad!!!!

    Good luck and thanks for any insight you give me!!!!
    Lisa T
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    Old 06-21-2004, 07:20 AM   #3
    hello_kitty_777
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    Re: Endometriosis Help Plze!!

    an ultrasound will not show endometriosis. that is y sometimes its hard to get diagnosed. it took me 3 years to get diagnosed. i was diagnosed with everything from IBS to depression. finally when everything they did just didnt work i was took in for an exploratory laproscope (only way to diagnose endo.) girl, i was covered. i had stage 4. they said i probably had it since i was like 17 or 18 and left untreated it just kept progressing. it took em 3 1/2 hours to laser it all off and i almost lost my right ovary. 1 1/2 years later, symptoms returned, another lap. no endo. found. now experiencing pain in my right rib cage and around my belly button(where most of my scars are) oh i aslo had my appendix out 1 month after my first lap. anyways, i was reading on here that you can get adhesions on your intestines and stuff from laproscopic procedures but again those are hard to diagnose too cuz you have to have a lap. done and are usally misdiagnosed with IBS. thats me. i go see a new dr. today. hopefully dont get diagnosed with that yet again and still come home in pain and feeling hopeless.

    angel

     
    Old 06-21-2004, 07:35 AM   #4
    Vintage Wine
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    Re: Endometriosis Help Plze!!

    Quote:
    Originally Posted by hello_kitty_777
    i was diagnosed with everything from IBS to depression.
    angel
    LOL! Not at you having endometriosis but that doctors are so lame that when they can't (more often - WON'T) try to get to the root of your illness, they throw some anti-depressants your way and say it's "Psychological"!

    Endometriosis does indeed affect your intestines. I had spastic colon for years and years. Had ovarian cysts and several laporoscopies for ovarian cysts and when I got off the pill, the endometriosis reared it's ugly head with a vengance. I also suffered severely from adhesions. It took a couple of years to get those cleared up. Endo also affects your bladder. Endometriosis is a horrible illness that is as bad as cancer. Though not "deadly" like cancer, the pain, frustration, lack of support, etc. is enough to make one want to give up.

    Hello Kitty, have you spoken to your doctor recently about your pain? What did he/she say? If they won't listen, try to find another doctor who will.

    Keep me posted!

     
    Old 06-21-2004, 07:19 PM   #5
    Lisa T
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    Exclamation Re: Endometriosis Help Plze!!

    Could you explain the stages to me, what does that mean?? Is there anything that can be done to relieve the pain???? Its so bad !!!I've tried pain killers that the doctor gave me, and just plain old aleeve like he suggested for the swelling but nothing is helping and I'm only getting a couple hours of sleep a night. I'm hitting exhaustion!!! Which is not good for anyone, but for me makes my seizures more active!

    I wish Thursday would get here... can anyone tell me what to expect?? What is usually the next step after the ultrasound (of course depending on what they find)... I can't believe how nervous I am. Sorry about my chitter-chatter tonight I'm running on fumes!!!
    thanks for the info everyone!!!!

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    Old 06-21-2004, 07:41 PM   #6
    hello_kitty_777
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    Re: Endometriosis Help Plze!!

    the stages are just the severity of the disease. when there isnt alot of endo., it is stage 1, when there is alot it is stage 4, etc. stage 4 is the highest you can go and is what i had/have. As I have said before, you cannot see endo. on an ultrasound, just cysts. You cannot see endo. on a CT either. The only way to diagnose it is through the laproscopic surgery. It took my dr. a long time to get that far with me. I was told it was all in my head. and told to take tylenol. Then on occasion when I went to ER for it I was given hydrocodone. But after so many visits there, your labeled as an addict. So, I feel you girl. I had to go as far as buying on the street once it was soooooo bad before my period I thought I was gonna die! and the ER dr. told me I was in there 3 times within 3 weeks and she wasnt giving me anything else but enough pain meds. to take care of it for 2 days. Well, finally 3 months later my dr. I guess got tired of the ER visits and dr. visits and did the laproscopy. I was covered. Stage 4. She felt so bad. I didnt even need to make an appt. after that I could just walk into her office and she would see me. She put me on hydrocodone for about 6 months after my surgery cuz there was microscopic pieces she couldnt get out. Then I moved to florida. Labeled as an addict again. Had another Lap. done, no endo found. Its been about a year and a half since that lap. still having painful periods real heavy/irregular and backpain especially before my period. new symptom though, sometimes streaks of blood in stool for a day or two before my period. So I dont know what is gonna happen now. GYN wont give me any pain meds. So im back to goin to ER and getting treated pretty bad in there. labled as an addict again. I dont know whats gonna happen now. So I know exactly what you are goin through girl!! wbs

     
    Old 06-24-2004, 07:57 AM   #7
    kaosmom
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    Re: Endometriosis Help Plze!!

    Have you gone to see a GASTROENTEROLOGISTS for the black or light colored stool? I had the same pain you have with the black stool and they find that I had a blooding ulcer.

     
    Old 06-24-2004, 10:14 AM   #8
    sidnee74
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    Re: Endometriosis Help Plze!!

    I just had an ultrasound yesterday. I read a few places online that said they can see endo on an ultrasound if it is big enough. But I also spoke to another woman who said they didn't see hers. So now I am confused. I was really hoping if it is endo they would be able to tell something by the U/S so that I can put an end to the madness LOL!! 2 CT, 1 xray, pelvic, pap, and U/S in the past month. If nothing shows up I will probably have to have a ureteroscopy to look for a kidney stone that *may* be there and *may* be the cause of my pain. What if nothing shows up on the U/S? What do you do next? Isn't the lap kind of an invasive procedure to just ask the dr to do? I'm sure mine would do the ureteroscopy first since there is the possibility of the stone.
    AAARRGGGHHH! Just when I think I'm getting closer to a dx....

    Well, at least God knows what's going on.
    Sid

     
    Old 06-24-2004, 11:20 AM   #9
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    Re: Endometriosis Help Plze!!

    Hi there, I had severe endometriosis with a lot of scar tissue and adhesions. I had a full abdominal hysterectomy on June 4th and spent 13 days in the hospital. I have never been so sick and so scared. I ran into some problems and had to have a 2nd surgery due to a nurses error. Anyways before you opt for a major surgery check out all of your options. I feel I am worse off now with other problems, bladder leaking all of the time etc.


    Good Luck!!

    Robyn

     
    Old 06-24-2004, 12:10 PM   #10
    clint3521
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    Re: Endometriosis Help Plze!!

    HELLO KITTY777- something else you may have them check is your gallbladder. I had several abdominal pain on my right side from under my right rib cage to my lower abdomen. They checked me for everything and nothing came up. I had a lower GI and Upper Gi, bloodwork(tons of it), paps, CT, you name it, I had it. Then 9 months later they did a test on my gallbladder and it wasn't working. I'm only 23 and so they ruled that out saying I was too young, and like you diagnosed me with IBS. Just a suggestion and best of luck. Now I'm having lower abdominal pain on the right side and they say it's a spastic colon and I have constipation. I'm thinking it's a women issue, but I have had my ovaries and fallopian tubes checked through ultrasound and nothing wrong. So now I'm looking into Endometriosis. Best of luck to all of you! God bless!

     
    Old 06-24-2004, 06:23 PM   #11
    Lisa T
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    Wink Re: Endometriosis Help Plze!!

    hello kitty... I wanted to update you (and everyone else) I went for the ultra sound and everything looked fine! So doc took pitty on me and is going to do the laparoscopy on me Wednesday the 30th at 7:30 in the morning!!! Said he felt we were past the point of trying birth control pills to see if they would help, we needed to know what the problem was. I think answers might be coming my way!!! He did talk about the big H word. But I had prepared myself for that!!! I'm 31 and I have two beautiful children (one boy, one girl) and my husband has had a vastemy(sp) so the talk didn't even scare me. He wasn't saying I needed one, just if he found I was covered, that that would be his recomendation. So I'm on my way.....

    How are you... any relief???? Hang in there....

    Sid... I'm thrilled my doc wants to take a peek inside to see if I have endo, my understanding is thats the only way to get diagnosed with it and get treatment.... Good luck and I hope they find whats up with you, keep me updated, I'm not to far behind you in your test list!!!!


    Lisa T
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    Old 06-24-2004, 07:39 PM   #12
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    Re: Endometriosis Help Plze!!

    hey is me kitty had to change my name and password. forgot the other one. this is my new one. well, guys. sad to say had to go to the hospital yet again! tuesday morning. was there from8 am to 2 pm. I had started my period monday night and by tuesday morning i could barely walk. and my back hurt soooooo bad. this time was different though, i had pain on my left side (is usually on my right). i could feel like a tubey thingy, it was sooo hard. the dr. said it was just from bein swollen probably covered in endo. all my blood tests were fine though. so he gave me some fluids and sent me home with a script for some blue percosets. i am confused about my white cell count though. cuz before my period starts, usually about a week before, my right side will just KILL me and i cant eat anything greasy. well, last month it was so bad i was in the hospital. and all they could find was my white cell count was high. the dr. dx''ed me with IBS and sent me home with some nulev. which did absolutely nothing by the way. could i have endo. on my GB or something over that way. or adhesions?? i am totally confused. and also, if i had a lap. done 1 1/2 years ago and nomore endo was found, could there be some there now???

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