# IBS/Endometriosis



## Bowiegirl (Oct 12, 2004)

Hi, It's been a while since I have visited. It's good to be back. I wanted to share with you the outcome of a doctor's visit that I had. I went to an endometriosis specialist in Denton, TX. Not that I have endo, but I was looking for a new gynecologist and I heard he was very very good. To get to the point, he talked to me about my IBS. He said that 90% of his patients that walk through the door that have been diagnosed as IBS actually have endo. I go for a sonogram on Tuesday for him to get a better look at what is going on. He was almost positive that I had endo just from the symptoms that I have. At first I thought he was a quack for saying that without looking at me, but after talking to him for a while I had no doubt in my mind that this man knew what he was talking about. I'll let you know what he says on Tuesday. I would love to hear your comments.


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## Fed Up (Jun 5, 2005)

LOL - It's right in front of my nose Roo! What am I like! Texas Girl I've read up a little on this and I can't believe how simular the symptoms are! HOw were you diagnosed with this rather than IBS?


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## 19955 (Aug 3, 2005)

I have endometriosis and thought it was IBS later to discover that I have both. But I found out I had endo about 4 years ago and really did not have any pain again until a year ago. 4 years ago I had the laporascopic surgery and I was good to go until last year now my OB/GYN has put me on a non stop birth control so I don't have a period or the pain.


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## Fed Up (Jun 5, 2005)

Well I have a bit of a dilemma. I went on the contraceptive injection, and Prozac a couple of days apart. Since my D eased up I thought it was the Prozac that was helping, but since someone mentioned Endo on another post I actually looked it up, and the injection is actually supposed to help with Endo. What do you think? I'm due another injection in September so I'm thinking of not having it this time to see if the D returns. Wondering if I've been misdiagnosed - The doc has never mentioned Endo to me at all!


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## Bowiegirl (Oct 12, 2004)

I have to go to him tomorrow and he is going to do a sonogram. The sonogram will show him how much endo is actually in my abdomen. If there is a lot, then I got the impression that he would want to do a diagnostic laporoscopy to cut some of it out. As far as a diagnosis...him listening to my symptoms convinced him. For a definitive diagnosis you would have to test some of the scar tissue that he would remove during the diagnostic lap. I was really stunned by the percentage of women that he said was midiagnosed with this. In my case, my endo is on my intestines. Therefore, my bowels aren't working properly. That is why I was diagnosed with IBS. I'm really looking forward to tomorrow so that I can get some more info. I'll definitely post my results of the sonogram. I'm just in awe that no one has told me about this after all of this time. I've been to 2 other doctors and they haven't been aggressive with my situation at all. One visit with this guy and I have answers to questions that I have had for over 2 years. What a relief!! I'll keep you posted.


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## 17939 (Jul 25, 2005)

Hey Texasgirl, I'm Kaly from Austin,TX. I was diagnosed with probable endometreosis in 1993. I had laperoscopy surgery in early 1994 to remove it. At that time the only clear diagnosis could be from the laperoscopy procedure. I was a mess befor the surgery. I had my period all the time. My breasts were constantly swollen & hurt. I developed an ovarion cyst the size of a tangerine. I had bacterial infections all the time. Since the surgery I've had little to no problems. I will tell you that I am also prone to being IBS-C. However, diet & exercise helps with this. Best of luck to you! Let us know how you are doing!


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## Bowiegirl (Oct 12, 2004)

Hi Kaly, Thanks for your response. I have some questions for you if you don't mind. I read that you had the diagnostic lap done and haven't had any problems since then. Are you on any medications? Is the diagnostic lap the only procedure/surgery you have had? Did you notice a substantial change in your IBS as far as it becoming almost nonexistant? I am relieved that I might be able to stop taking Zelnorm on a daily basis, but my fear is that I will have to start taking a different pill for endo. I am hoping that this doctor is right and that I don't have IBS.Thanks to all for responding. The more info the better.


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## 17939 (Jul 25, 2005)

Hi Texasgirl,My doctor actually removed all my endo with a laser at the time of the laberoscopy procedure. There are less invasive ways to control endo. but not get rid of it. One of my options was to take a monthly progestrone shot that would work as a birth control method too. I've always had a hard time taking birth control pills & I really just wanted the endo. gone, so I went ahead with the lap. surgery. As for making my IBS-C better; my symptoms actually worsened with the endo. so in a way they were better, but I still have problems with it. In other words, for me they were two seperate problems. I'm curious, does Zelnorm work well for you? My C usually can be controlled with diet & exercise, but when I have a bad flare...oh boy! I hope that your IBS goes away if your doctor determines you do have endo.Kaly


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## Bowiegirl (Oct 12, 2004)

Hey Katy, Zelnorm has been a miracle drug for me. I've been on it for about 1 1/2 years now and I can't imagine not having it. At first my pain went completely away and my bowel movements were regular. It never has helped with the bloating for me though. But, the effectiveness has started to wear off some. I don't necessarily go everyday now. I definitely won't go if I don't take the medicine and the pains during a bowel movement are present when I don't take Z. It just seems like it isn't as effective, but it is still necessary. I recommend taking it if you don't already. Have you ever tried it?


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## 17939 (Jul 25, 2005)

Hi again,I realized that I did'nt answer all of your questions. I never had to take any medication for my endo since the doc was able to remove it. The laporascopy procedure is the only surgery that I have ever had for anything except for wisdom teeth removal when I was around 18. Although I have not had any trouble since my doc removed my endo. he did tell me that it is not uncommen for the endo. to return after removal.


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## 17939 (Jul 25, 2005)

Hi Texgirl,Thanks for your reply about Zelnorm. I've never tried it. Was just curious how well it worked for you. I've heard some people say it's a miracle pill while it has not worked for others at all. I guess any time we take something on a regular basis it'll loose part of it's affect after a while. Does it have any side effects at all? That's what I hate about medication. One pill fixes something & causes something else to go wrong. My doc put me on Prevacid for reflux & I've been having to take magnesium at night because it has caused me to have really bad C. I hate this!kaly


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## Bowiegirl (Oct 12, 2004)

Kaly, The only side effect that I had was in the beginning. For the first 3 or so weeks I had diarrhea. Being that I am IBS-C it was welcomed. Others have had headaches, but they were temporary. Some people quit because of the diarrhea and headaches, but it passes with time. For me, it was well worth 3 weeks of diarrhea for me to be able to use the restroom for the last year and a half. It's worth trying, believe me!!


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## 17939 (Jul 25, 2005)

Thanks Texasgirl,Yes, I know about welcoming D. At least then it's gone, I definately would be a happy camper! That's not to say people with D would agree with that. I know that anytime someone has a chronic problem it's awful! Let me know what happens with your endo.Kaly


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## Bowiegirl (Oct 12, 2004)

Well, I went to the doctor yesterday. I left a little flustered and in shock. Basically the sonogram found a fibroid on my uterus, endo in the wall of my uterus, adhesions on my right side coming from bowel attached to my right ovary and uterus. There were also adhesions around the left ovary. The doctor recommended a hysterectomy to take out my uterus and ovaries. I was shocked at first because I'm only 29. But, I have two kids and don't want anymore. Endo can spread to your major organs (ex: lungs, liver) and I don't want that to happen. They also said that I do not have IBS. During the sonogram you could see my bowels "gurgling" which was a good sign that I do not have IBS. I guess when you have IBS your bowels don't gurgle. I don't know that for sure, just guessing. Anyway, good new is I don't have IBS. Bad news is I have endo. But, this is something that all women should consider having checked out if you are diagnosed with IBS. I've been taking meds for 2 years for IBS and I didn't even have it. Kind of frustrating. I hope I was able to shed some light for some people and good luck to everyone. Please respond if you are interested.


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## 17939 (Jul 25, 2005)

Hey Texasgirl,Goodness gracious, what a time you are having! I was 29 when I had my endo removed & I had a pretty extensive case. It might not be a bad idea to get a second opinion before you go ahead with the hysterectomy. If you do decide to have it, at least you won't have to deal with that monthly thing & everything that goes along with that anymore.IBS is not a disease like IBD. It's a condition where one has chonic pain whether it be D or C or gas, but there is no disease in the intestine.Hope you get better soon! Let me know what you decide to do and how you are feeling!Kaly


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## Bowiegirl (Oct 12, 2004)

Hi Kaly, Thanks for the response. I think I am going to go ahead with the hysterectomy. I could do the diagnostic lap but the endo is just going to keep coming back and possibly spreading. To save myself from more and more surgery's I'm just going to take care of it now. Plus, there are perks like no periods and stuff. I am a little worried about the hormone issue and side effects of medications. But, anything would be better than living in this pain. Thanks for the conversation. I've enjoyed it.


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## 17939 (Jul 25, 2005)

Best of luck to you. I've enjoyed our chat too!kaly


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## 19955 (Aug 3, 2005)

Hi Texasgirl,Did you go to your gyno or gastro doctor for the synogram. I wonder if I don't have IBS and it is just my endo acting up. I was going to say that you should get a second opinion about the hysterectomy but since you have 2 kids and don't want anymore it should be okay. My aunt had it and said she feels much better. Not to mention she also had all the symptoms we have been having but found out her gall bladder was messed up and they took that out too. Unfortunately for me I can't have a hysterectomy although I would welcome it to feel better. I don't have any children I am 31 and I just got married so we are going to start trying to have children in the next year. Well good luck to you and keep me posted on how you are.


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## Bowiegirl (Oct 12, 2004)

Hi ron_b_1993, I originally was using a gynecologist and gastro doctor in a different town. I felt like the gyno that I had used for 7 years had done all he could do. He didn't show any interest in looking for any other causes. My gastro doctor really didn't do anything except tell me that I have IBS and gave me Zelnorm to take. I heard about this really good doctor in a different town so I tried him. He's the one that diagnosed me with endo. I never knew I had it. When he told me that 90% of the women that come in his office that have been diagnosed with IBS really end up having endo I knew I had to share that info. He is a specialist in this area so he knew I had endo right off. The sonogram that they performed in his office proved that. I'm not saying that every women that has been diagnosed with IBS should seek an endo doctor, but the 90% number convinced me that I needed to share that info. You mentioned getting a second opinion and I thought about that. But, this guy is a consultant for medical books/journals, has written his own journals, is asked to speak at medical conferences in other cities, and is involved with somekind of World Doctors Assoc. I feel like his credentials speak for themeselves. I honestly don't know that I could find someone more qualified then him. How long have you had endo?


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## 19955 (Aug 3, 2005)

I have had endo since probably high school but only diagnosed in 98. Every doctor I went to never seemed to know what was wrong they gave me ultrasounds and all kinds of test but not what I really needed. Then I found this great woman doctor who was able to diagnose me. I was so happy to finally know I wasn't crazy. My periods would come and I would not be able to go to work or school for almost the whole week. It was horrible. One of my friends has the endo as bad as you do and all she did was get hers removed with the lap surgery. But if you want it gone then have the hysterectomy. I am going to have one as soon as I have a child. I don't want any of these problems anymore I also want the IBS to be gone. For some reason this week I have D and I am going crazy. I thought C was bad but D oh my goodness. I am in pain. God please help all of us.


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## Bowiegirl (Oct 12, 2004)

Hi everyone, I think I have decided to go ahead with the hysterectomy. I haven't told my doctor or anything. I still feel a little hesitant. I'm worried about the hormone thing. I've also heard you gain weight after a hysterectomy. Does anyone have any insight on this?


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## 13728 (Jul 13, 2005)

Hi TexasGirl - I think that the hormone thing can be controlled... either with meds, diet, exercise or all of the above. And I'm a firm believer in Gaining weight means that you're taking more food in than your body needs...and not doing much physical exercise. Hopefully that doesn't sound crude... I know people gain weight on meds.. because either their metabolism slows down or they're taking more in (either for comfort, etc.). I have a slow metabolism - so I have to be very careful to take in what I need... When I was on BC pills - I started gaining weight... I adjusted my diet and the weight fell off. Hopefully that makes you feel better. My mother in law had a hysterectomy when she was 29. She never had major problems with hormomes. She did find that she was less lubricated sexually (but there are alot of things OTC that you can use to help this). She also supplemented her diet with a nutritionist. I'm glad you're going through with your hysterectomy and I hope that it relieves you of the pain and suffering you've been going through. I hope all goes well for you and will be praying for you too! Is your doc in Denton? I'm in grapevine and looking for a good doctor. My gynies (Womens Integrated Healthcare) are basically jack**ses... wouldn't even consider endo when I saw them two weeks ago... told me to work with my GI to figure out the problem!!!!If you notice that you start gaining weight, eat less and try to get some physical exercise 3 or 4 days per week. Keep us posted on your plans, etc.Roo


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## Bowiegirl (Oct 12, 2004)

Hey Roo, thanks for the advise. It helps to hear of other peoples experiences or of others that they know have been through this.My doctor is in Denton. My personal email is t.davis###communicomm.com if you want his personal info. I am hesitant about posting it on here for the world to see. I tried to send you a "private message" with the details on him, but it said I was not authorized. Do you know what that's all about?


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## 21898 (Aug 7, 2005)

TexasGirl - Is the sonogram the same thing as a pelvic ultrasound or is it something different? I was surprised to read your post because I thought the only way endometriosis could be seen was via the laproscopic surgery. I would be interested to know about the sonogram method your doctor used. I'm suspicious that I may have endo and a sonogram would be easier than the surgery. Is it something that you have to go to an endometriosis clinic for? Thanks.


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## Bowiegirl (Oct 12, 2004)

Colonial, they did a regular sonogram on the outside of my stomach and also a vaginal sonogram. The vaginal sonogram is what gave them all of the information. My doctor said that you could see the same thing from a vaginal sonogram that you would see during a laparoscopy. The only difference is you can't test anything. It is a visual thing only. I was shocked at how much they could see. I don't know that you necessarily have to go to an endo clinic, but I would definitely go to an endometriosis specialist. This is what this doctor is. Now that I know all of this information, I would recommend any woman getting this checked out before you live the rest of your life in pain because you think you have IBS. My doctor did say that a lot of doctors miss this. Which mine did. He was a great OB doctor, but this obviously wasn't his cup of tea. Has anyone ever brought up endo to you or do you just suspect that you might have it?


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## 21898 (Aug 7, 2005)

TexasGirl - Thank you! It is very helpful to know that it is the vaginal sonogram that can reveal so much information. I've only had two ultasounds on my outer abdomen. They showed a large fibroid and some cysts but it feels like more must be going on from the pains. My primary care doctor has mentioned the possibility of endometriosis several times and thinks I need to get it investigated. I tried to ask an ob/gyn about it several years ago but like your previous doctor, he did not seem very knowledgeable.


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## Bowiegirl (Oct 12, 2004)

I have come to the conclusion that OB doctors are not the doctors to go to. Obviously they are more interested in the baby part of gynecology then all of the other stuff. Once I went to someone that didn't deliver babies, I got answers. I hope you decide to check into this. It sounds like you have seriously thought about it. Not knowing and feeling like there is no hope in sight is the worst feeling. Let me know if you decide to proceed with this. I'd be interested in comparing doctor's info. Good Luck!!


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## 13728 (Jul 13, 2005)

Hey TexasGirl... I'll email you... I haven't been on the boards for a week or so... Thanks!Roo PS.. I don't think the messaging works or is enabled on these boards.


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## Bowiegirl (Oct 12, 2004)

Hey everyone! I thought I would let you know that I finally scheduled my hysterectomy. It is Sept 28th. I've been putting it off out of fear, but finally decided to call this morning. I thought I was mentally ready to do this, but when I hung up the phone I just broke down. I feel better about it now, but making that appt was so final. Thanks for listening and good luck to all!!


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## 21898 (Aug 7, 2005)

Texasgirl - Surgery is a big decision but hopefully it is the right step towards a resolution of some of your pain problems. Try to focus on the positive outcomes that you will eventually have from doing it to distract yourself from worrying about the recovery period. I know several women who decided to undergo surgery for fibroid removal and they are feeling better now. I am going to have to wait until November when I can change my health insurance before I can see a local doctor who treats endometriosis.


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## Bowiegirl (Oct 12, 2004)

Hi! Well, I had my surgery a week ago today. I can't tell you how much better I feel. I feel like a new person. Plus, I have been having 2 bowel movements a day for the past 3 days. I can't tell you the last time I remember having 2 in one day. There is no doubt in my mind that I never had IBS and that I was misdiagnosed. I don't regret having the hysterectomy at all. I hope that this bit of info has helped some of you. I know that my only regret is that I didn't find all of this info out earlier. Thanks for all of your comments. Good luck to everyone!!


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## 18944 (Sep 15, 2005)

Your post interested me and it is definitely something I will have to bring up with my gastroenterologist when I see him next week. In the meantime, I was wondering if you could answer a few questions:1. My IBS had its initial flare-up right around when I started using birth control pills - Does this sound like a red flag, or would that be something to take away from the endo. possibility?2. What diagnostic tests will NOT show endo.? I have had an EGD, colonscopy and CAT scan of my abdominal region, all turning up normal (except some bladder distention on the CAT) - Would any of this have shown the endo?


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## Bowiegirl (Oct 12, 2004)

Hey Highlandfalls, Those are some hard questions. To be honest, I can't answer your question about the birth control pills with actual knowledge. My feeling would be that that would not take away from your chances of having endo. I would think that it would be more of an idicator. Sorry, not much help with that question. I do know that the colonoscopy would not show endo. Your GI doctor probably isn't the person to ask about this. I doubt that he/she will be able to answer your questions. The only thing that showed endo in my situation was a vaginal sonogram. The laprascopy (where they go through your belly button with a scope) will also show endo. Those are the only procedures that I am aware of that will show endo. Even then, when they got in there to do the hysterectomy it was worse than what they thought. I would find a gynecologist that is really good with endo. That's what it took for me. The one thing that prompted me to even post about this was my doctor's statement of that 90 something percent (I can't remember the actual figure) of women that walk through his door that have been diagnosed with IBS have endo and not IBS. That has proven true for me. Good luck in your endeavor and let me know if you have anymore questions. Hope I helped some.


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## 18944 (Sep 15, 2005)

Thank you for your comment and your attempt to answer any questions. I appreciate such a quick response.I just scheduled an appointment with a gynecologist for next week - I feel very lucky because I'm a college student with all my doctors at home and usually it's quite difficult to get appointments during the times I'm home. Also, it tends to increase the amount of time before a diagnosis is made - I have a feeling I would have been IBS "diagnosed" and on medication long before I actually was had I not been at school.I don't know my doctor's level of expertise on endo. I've actually never seen this particular doctor before because there was a scheduling error for my first gyno appointment and someone else had to look at me. I appreciate you posting this so much, because it's something I probably would have never thought of otherwise. I know that it could still be IBS, but given my symptoms, I definitely want to test it out. I hope your recovery goes well.


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