Went to ER last night, sooo much pain!!!

[Ihurt]

Hi everyone.

Well as you all know, I am still not diagnosed. I just keep being told I have IBS. Well I started having pretty bad lower abdominal pain like in my pelvic area on Friday night. Well I woke up Saturday and It was pretty bad and kind of escalated all day. Well I layed down last night thinking : oh my God, I am so much pain. I have a pretty high pain tolerance so this was severe. I woke up at 1: 30 in the morning with just awful sharp pains in my lower pelvic abdominal area, it was kind of in the right side more so, but also some on the left. I really did not want to got to the ER, I mean damn, the flu is running rampant and I sure do not want that! Well It got so bad the pain, that I just decided to go.

When I got there I told my symtpoms to the doctor. They ordered blood work and took a urine culture. I even told them about how I have been dealing with this pain for almost two years now. I also told them about the slight pinkish blood tinged vaginal discharge I am getting. They did a pelvic exam where they just feel your ovaries and whatnot. Since I cannot take many meds and am so sensitive, they just gave me 3 tylenol and zofran( not sure why the zofran since I did Not have nausea, but whatever, they said it may help the bowel pain). When the blood came back normal they were just going to leave me go. At first the one lady doc mentioned a CT scan. Then she decided No, she was not goingt do it since I cannot drink the contrast( I have severe reactions to it). Well there was a time switch and I saw a different doctor who was taking over that shift. I told him, "listen, I am in pain, BAD pain here, I know something is not right". Then I asked him what he thought about doing the CT without the oral contrast, but with the injection in the vein. He said, YES, that that would be a good idea. Now I dont get it, the first lady doc said that because I am very thin they would not see much without the oral contrast. But then this doctor tells me, yes they can still get a good look without the oral contrast as long as you can have the injection one with the iodine. So finally I get the CT scan.

doctor comes back and says the CT scan did not show ANY appendisitis or anything else that would be of concern. He said that he did not have an explanation for my pain. I told him all the other tests I have had done( an MRE of small bowel, stool tests, blood work, etc...) I told him my gastro did not want to do a colonoscopy due to how bad I reacted to the MRE and the stuff I had to drink. Well this doctor said that I probably should eventually get a colonoscopy if all this keeps getting worse, but then he says that because my MRE of small bowel was normal and that they did not see anything sinsiter on this CT scan, he said He is pretty sure I dont have crohns! But he did say the only real way to rule out or diagnose crohns is through a colonoscopy with biopsies. But he said he was certain the scans would have showed something if I had crohns. I asked him about my pelvic ultrasound and he said it did not show anything concering.

Here is where things get nuts. So, he discharges me and says to follow up with my GI doc. I asked for a copy of the CT report just so I can have a copy, I like to have copies of all my tests. Well on the way home I am reading the report. This is what it says :It basically says all organs like liver, kidneys, spleen are all unremarkable. It also says there is NO small bowel obstruction and that the vascular osseous and soft tissue structures are unremarkable.

Then it says this about the CT part of the pelvis: There is a 2.3-cm corpus luteum within the left ovary. Mulitple follicles within the right ovary. There is suggestion of a mild hydrosalpinx.Multiple nabothian cysts are present in the cervix( which I already knew I had and was told this was normal by my gyne awhile back). But then it goes on to say there are uterine fibroids seen as well well. There is a small amount of free fluid which is likley physiologic( normal). There is no bowel obstruction. The appendix is unremakable. There is no pelvic adenopathy. The vasular, osseous and soft tissue structures and unremarkable.

OK, why the HELL did this doctor NOT tell me about the flbroids in my uterus??? I mean I was in there with severe pelvic pain and did tell him I had the blood tinged discharge! He did not even mention the fibroids! I called him when I got home and asked him about it. He then pulls up the CT image and I asked him ow big were the fibroids. He said that one measured 4 to 5 centimeters. Then I told him that the report said there were Fibroids seen( more than one). He said that a CT scan is ok at seeing them, but a vaginal ultrasound would be better. ( UMM ok, lets see here, I am dying in pain and it may be from my intestines, but it also could be related to my female parts too. WHY on Gods green earth did he not order a vaginal ultrasound while I was there!!!!!????). So now I am at home, still in agony with pain in my lower intestines and pelvic area with nothing to really help the pain.

WTH! I am so worried and feel so awful here. I mean this is why I HATE going to the ER! They are so F****** useless! I mean wouldn't you as a doctor have looked a bit more into the fibroid thing since I was complaining of some pinkish discharge for the last couple months?? I mean I just dont know what to think. Also he told me that I likely do NOT Have crohns as something would have been seen on the CT scan and the MRE I had a couple months back with me being in this much pain. But then he goes on to tell me I should get a colonoscopy eventually if the pain continues. But he says nothing about the female thing or fibroids.

Oh and on the CT report it says that Helical CT of abdomin was performed with administration of nonionic intraveinous contrast. Oral contrast partially opacified the bowel. But I did NOT drink any contrast at all!!! HOw could they say that. I mean I asked the doctor if they obtained a good picture as I know that usually it is better when you drink the contrast. He said they got a pretty good picture with just the intraveinous contrast. Can you get an accurate CT without the barium contrast???

So that is where I am. I am confused and in pain with No answers ( oh but now I do know I have uterine fibroids). Not sure about what to do about those..

 

[Jennifer]

ER docs will always be hit or miss Ihurt as you saw first hand when the doctors switched out. If it helps here's some info on Uterine fibroids: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001912/ Says a pelvic MRI can also be done.

I never drank barium for a CT scan, usually only did the IV contrast but one time there was a clear liquid contrast (don't remember the name) I had to drink and I believe they did a CT for that one. A CT without oral contrast will still show if there's anything life threatening that the ER can address.

Sorry you're not feeling well at all. Keep us posted on how you're doing.

 

[Ihurt]

Hi Crabby, thanks for the reply. I am just really upset right now. I mean first off the CT states that I had fibroids seen on the scan, yet the ER doc did not even mention them, I found it when reading the report. Well I am a bit confused because I had the MRE of small bowel and Pelvis less than three months ago and they did not mention anything about my uterus at all! I talked to a friend of mine who is married to a doctor and her hubby said that an MRE should have seen a fibroid especially one that is 4 to 5 cm in size. He said that there is definlitely some incompatant radiologists or doctors making out the reports. Also the fact that is it possible for a fibroid or a tumor to grow that quickly within 3 months, I mean is that why they did not pick it up on the MRE?? I mean I am in so much pain and feel that the ER just sloughed me off. I mean I told this idiot doctor that I am having the pelvic issues as well as the intestinal. I mean I have been having blood tinged discharge for a few months now. Went to a gyno and he was no help either! I mean come on, really????The least the ER doc could have done is order a vaginal ultrasound right??? I am now trying to talk back with the gyne's office and see what the next step should be. I just want to rule out anything serious with my lady parts! I am so scared....

Thanks for listening..

 

[Jennifer]

I'm sorry Ihurt, I know its beyond frustrating. With the ER they treat life threatening problems. As far as I read about Uterine fibroids they are fairly common and not an immediate health risk (that's what I got out of the link I gave you anyway). Yes it is possible that they can cause complications but if the ER doc doesn't feel that your life is in danger than they would prefer that you followup with your regular doctor to have further testing done. If your GYN isn't taking this seriously and wont do the ultrasound or MRI then if possible please find a new one (more hassle I know) or you could have your General Practitioner order these tests and then see your GYN with the results.

I may be sounding insensitive, but I really do understand. I've been to the ER so many times for myself or for my husband and sometimes we get all the help we need and sometimes we're completely brushed off (there are two different hospitals to go to here as well and we use both depending on the experience with the last one). My husband went in on Saturday due to extreme pain in his groin, left testicle, and lower left abdomen. They did do a CT scan (IV contrast) and didn't find anything that was an immediate danger to his health. That's a key phrase there, "immediate danger" that means its possible that something else was found but he should followup with his doctor but how do you followup with your doctor if they don't tell you about the little stuff they found during the scan? Its good that you get a copy of your records. I do it the slow way by telling my doctor that I went to the ER and then have their office get a hold of the results. Its a bad habit really I think, then again I'd have a ton of papers that I wouldn't know what to do with.

Anyway, they asked him if he had any other tests done and I told them that he had an ultrasound done about or over a year ago and nothing significant was found. The ER doc suggested that they could do the ultrasound again but they felt the issue wasn't with his scrotum but with his colon as he has had bowel issues in the past (polyps removed from colon, blood and mucus in stool, diarrhea and abdominal pain etc). So the ER doc said he should see a GI again. Lots of fast talk really but in the end my husband still doesn't know what's wrong and was given pain meds that wont last long.

You just have to keep doing this over and over until you find a doctor who's willing to listen and keep running tests until you get a diagnosis. Sometimes those doctors are really hard to find but they're out there.

 

[xX_LittleMissValentine_Xx]

Just wanted to say I understand why you are frustrated, but you are a step closer in understanding what is going on. Dont give up and good luck x x x

 

[Niks]

I really hope you get some answers soon.. I know how frustrating it is, my daughter has never really got very far with the ER.. Only pain relief and rehydrating

 

[Ihurt]

Thanks everyone, I appreciate the support.

Crabby: I am sorry your hubby is going through the mill with not knowing what is wrong. That sucks. I hope they can find out what it is and help him. I never even would have went to the ER, but I actually thought I was having an appendicitis or something. I was very disgusted that the ER doc sat there and told me the CT was completely normal only to find out that it showed the fibroids( which I do not have a history with having those). Also I told him I had an MRE of my small bowel and pelvis just three months ago and they did not mention fibroids on that MRE scan which would have seen a growth that size. This is what is concerning me. How could something like that grow out of the blue that big?? That or it was seen on the MRE and just not mentioned( which would be odd, but then again, not suprising with how incompatent these doctors are these days!). I am losing all faith in doctors

I have an appt, with a new gyne for Feb 5th. She is suppose to be knowledgable about uterine fibroids. I think I have a lot of crap going on here. I just need some answers already. Thanks again!!!

 

[UnXmas]

I think Crabby was absolutely right here - the ER (or A&E where I am) only treat emergencies. They assessed you to find out whether your current pain was an emergency, but they were not interested in your chronic, on-going symptoms because, as much as you might want answers, that's not their job.

I'm assuming the fibroids are not an emergency situation. It would have been helpful if they told you they were there, but really it just seems they decided they were not an immediate problem, and probably not the cause of your current pain. They don't generally have the time to get into discussing long term issues. They don't know your medical history and aren't in a position where they can relate everything to your previous tests results and investigations. You can tell them relevant information yourself, but they're not equipped to manage you in the way that a consultant you see regularly, who has all your records and knows about what stage you're at in terms of reaching a diagnosis. ER staff contradict each other and themselves when deciding what tests to order because they're having to make snap judgements in a situation where they don't have many details.

Tests often reveal abnormalities which aren't of significance - i.e. aren't likely to be causing symptoms and don't represent a threat to health. My mum had a routine colonoscopy (due to family history of cancer) and the report said everything was normal but also said here colon was very large - I think it said it was slightly "atonic". She saw this on the written report later, but they hadn't discussed it with her because although it's not typical, it's not problematic. The doctor said the results were completely fine. This could be what has happened with the fibroids. If it's not - if they may be causing some of your symptoms - then this will be followed up in your outpatient appointments. Even if they are a problem, they're not an emergency so as far as the ER staff are concerned, your tests are normal.

Don't take this as a sign that they think you're not in genuine pain or that you don't have serious health problems that need to be addressed. I think I've said this on this forum before, but I once went to A&E because of heart palpitations and as soon as they'd concluded I wasn't having a heart attack they sent me home. They weren't unfriendly about it - they weren't saying anything about my other health problems - they were simply saying I didn't need treatment there and then. This kind of thing happens to so many people all the time.

I know how frustrating it is to be undiagnosed, but going to the ER isn't going to help with this. It was right for you to go because you had new, severe pain and needed to know if it was something serious happening. You may also have needed to go to get pain relief. But if you really want answers, it does seem like a colonoscopy is going to have to be the next step, if you can bring yourself to risk having it. It will hopefully at least decide on the Crohn's diagnosis one way or the other, when you're ready to have it.

 

[Ihurt]

Thanks Unxmas for the reply. Yes, I agree that the emergency room is only good for emergencies. I called my Gastro nurse yesterday and told her what happened at the ER. She also said the ER is only good for like gun shot victims and life threatening emergencies, though she did say it was good I went due to the severity of my pain just to make sure it was not something that needed immediate attention.

She did say that the ER was actually wrong to not mention the fibroids though. she said that especially since my complaint Was pelvic pain! It would be different if I went in there for some other unrelated issues and they just accidentally found the fibroids, but because my complaint was pelvic pain, they were very wrong not to address it.

She also told me that uterine Fibroids Can and do cause intestinal issues depending on where the fibroids are located in the uterus. I also have been having all the issues with the pinkish vaginal discharge for the last couple months as well. ( another reason the stupid ER doc should have mentioned this). My gastro nurse worked in a gyne's department for over 20 years so that was good, she is very experienced in this area. She told me she thinks this pain I had is definitely gyne related. She said first thing I should do is get in to see the gyne( I have an appt. on Feb 5th). She said they will do an ultrasound to find the location and size and number of uterine fibroids or anything else.

The ER doc, I even questioned him about the crohns. I told him my whole history and his answer was that due to my having a normal small bowel MRE and a normal CT I probably dont have crohns otherwise they would have seen something on one of these scans likely, like some sort of inflammation. But he also did say that if I keep having the issues then it would be best to eventually get the colonoscopy just to rule stuff out which I will have to do. He did also say that colonoscopy can sometimes worsen whatever condition that is already there which is why my gastro is so leary of doing it. But in the end, if my pain is getting worse, then I gotta figure this out.

I am a bit worriied right now about the whole fibroid thing. Here is the thing, I had an MRE about three months ago of my small bowel and the pelvic area and that absolutely should have seen a fibroid tumor that is 4 to 5 cm in size! The MRE did not even mention my uterus though. I even called my primary care doc and she was baffled as to why the person writing my MRE report did not mention my urteus, I mean they mentioned the ovaries and all that so she said they got the right splices and should have seen. It once again comes down to incompatent doctors! She said it should have been mentioned SO now my doctor had to call the hospital where I had the MRE done and tell them to have the radiologist pull up my images and now he has to re read it again, but correctly this time! It is such a joke. There is a part of me that does not even want to deal with doctors anymore at this point. I mean it seems like they really dont know anything and they make all kinds of careless mistakes and usually only end up making matters worse!

I also HATE being in the hospitals as they are soooo filthy! I am terrified of coming down with C-diff. I am on a low dose antibitoic long term to keep UTI's away so I know that makes a person more at risk to get c-diff. When I was at the hospital they did not even give me any covers for my socks so I was walking around in my own socks on the filthy hospital floors!. Well due to being so exhausted I forgot to throw out my socks in the garbage when I got home. I instead put them in the wash with my other clothes. Hope I did not contaminate everything. They were colored so I could not use bleach. ( I am a bit of a germaphobe understandably though due to all my issues).

Yeah, so I am just so fed up at this point. Sorry for the long rant. Thanks for listening. I am just so tired of all this....

I think Crabby was absolutely right here - the ER (or A&E where I am) only treat emergencies. They assessed you to find out whether your current pain was an emergency, but they were not interested in your chronic, on-going symptoms because, as much as you might want answers, that's not their job.

I'm assuming the fibroids are not an emergency situation. It would have been helpful if they told you they were there, but really it just seems they decided they were not an immediate problem, and probably not the cause of your current pain. They don't generally have the time to get into discussing long term issues. They don't know your medical history and aren't in a position where they can relate everything to your previous tests results and investigations. You can tell them relevant information yourself, but they're not equipped to manage you in the way that a consultant you see regularly, who has all your records and knows about what stage you're at in terms of reaching a diagnosis. ER staff contradict each other and themselves when deciding what tests to order because they're having to make snap judgements in a situation where they don't have many details.

Tests often reveal abnormalities which aren't of significance - i.e. aren't likely to be causing symptoms and don't represent a threat to health. My mum had a routine colonoscopy (due to family history of cancer) and the report said everything was normal but also said here colon was very large - I think it said it was slightly "atonic". She saw this on the written report later, but they hadn't discussed it with her because although it's not typical, it's not problematic. The doctor said the results were completely fine. This could be what has happened with the fibroids. If it's not - if they may be causing some of your symptoms - then this will be followed up in your outpatient appointments. Even if they are a problem, they're not an emergency so as far as the ER staff are concerned, your tests are normal.

Don't take this as a sign that they think you're not in genuine pain or that you don't have serious health problems that need to be addressed. I think I've said this on this forum before, but I once went to A&E because of heart palpitations and as soon as they'd concluded I wasn't having a heart attack they sent me home. They weren't unfriendly about it - they weren't saying anything about my other health problems - they were simply saying I didn't need treatment there and then. This kind of thing happens to so many people all the time.

I know how frustrating it is to be undiagnosed, but going to the ER isn't going to help with this. It was right for you to go because you had new, severe pain and needed to know if it was something serious happening. You may also have needed to go to get pain relief. But if you really want answers, it does seem like a colonoscopy is going to have to be the next step, if you can bring yourself to risk having it. It will hopefully at least decide on the Crohn's diagnosis one way or the other, when you're ready to have it.

 

[UnXmas]

I understand your frustration.

The ER doc, I even questioned him about the crohns. I told him my whole history and his answer was that due to my having a normal small bowel MRE and a normal CT I probably dont have crohns otherwise they would have seen something on one of these scans likely, like some sort of inflammation. But he also did say that if I keep having the issues then it would be best to eventually get the colonoscopy just to rule stuff out which I will have to do. He did also say that colonoscopy can sometimes worsen whatever condition that is already there which is why my gastro is so leary of doing it. But in the end, if my pain is getting worse, then I gotta figure this out.

I can only speculate that the ER doctor meant that having normal CT and MRE scans means Crohn's is less likely, but that a colonoscopy might be able to pick up the odd case that the other tests fail to detect.

Do you want a diagnosis primarily because it could lead to treatment, or to have an explanation for how you're feeling or some other reasons?
I actually think giving up caring about diagnoses was a better thing for me than actually being diagnosed! But I know you're not at that point yet. Unfortunately, there are bad doctors whether you have a diagnosis or not.

 

[Ihurt]

Those are some very good questions Unxmas .

Well, I think the biggest reason I want a diagnosis is to make sure whatever I have is not dangerous. I know that crohns can lead to damage if left untreated or left to get worse. But on the other hand I would just like to have some sort of treatment that would help me to function better and have less pain.

I dont know, from everything I read on here in how so many people go through tons of testing and still have no answers it makes me want to just stop going to the doctor period. I mean now I have my gastro's nurse telling me that she thinks a lot of pains may be coming from my gyne issues. I am not sure, but I definitely think it is also intestinal. I do believe I have some gyne crap going on, but still that does not explain all my issues.

It really sucks that having a colonoscopy is so invasive, especially for some. I mean my regular doctor is certain it may make me worse. She told me that you can actually get C-diff from having a colonoscopy, and I would be at a higer risk since I have had to be on long term low dose antibitoics due to my bladder issues. I guess the way my doctor explained it to me is that when you drink all the stuff that cleans you out, well you are also clearing out a lot of your good bacteria in your bowels.She said that leaves a person very suseptible to picking up C-diff,especially if you are taking antibiotics or have been on them recently. I did not know this but she said you can even get it from the scopes themselves! Well hearing that and the fact that doing the scope will ensure a definite UTI for me, it makes it very hard to make the decision to do it. But then there is that other part of me that would like to know for sure what I am dealing with. I mean you get what I am saying right???It is just so frustrating.

Believe me, if crohns was not such a serious disease( damaging to the point where you will need surgery),then I would Never pursue testing. Testing is over rated, very expensive and can have consequences and a lot of times, very unreliable. With a lot of the other health issues I have, I use to try and go from doctor to doctor trying to figure it out until I just got so sick of doctors just not knowing anything and all of them having a different answer or diagnosis. So I totally agree with you and understand your feelings about Not caring about diagnosis anymore, I do get it...

I understand your frustration.



I can only speculate that the ER doctor meant that having normal CT and MRE scans means Crohn's is less likely, but that a colonoscopy might be able to pick up the odd case that the other tests fail to detect.

Do you want a diagnosis primarily because it could lead to treatment, or to have an explanation for how you're feeling or some other reasons?
I actually think giving up caring about diagnoses was a better thing for me than actually being diagnosed! But I know you're not at that point yet. Unfortunately, there are bad doctors whether you have a diagnosis or not.

 

[UnXmas]

Hi again.

I got diagnosed with 2 different conditions after over a decade of symptoms, so I really think any time span for diagnosis is possible. My other condition I don’t want to name on the forum because it’s really rare – so much so that anyone I know would recognise me on here, especially since I don’t hide my gender, age or the country I live in. I’m paranoid not paranoid, but I write really personal stuff on this forum so I like to feel I’m doing so anonymously.

It’s because it took me so long to get diagnosed that I follow your posts and those of other undiagnosed posters – I understand the frustration so much.
The thing I had to weigh up was when pursuing a diagnosis was whether I would be treated badly by the doctor. Every test that came back negative and every time I was referred to a new consultant, I had to risk being accused of faking, being mentally ill, being a hypochondriac, having anorexia, etc., etc. And many doctors seem to see mental illness as the patient’s fault, so it always was put to me as an accusation.

At first I wanted to be diagnosed so I could be cured. Then later to validate and explain what was wrong with me. By the time I was diagnosed, the main point has been that I don’t have to go through testing and new referrals any more. I still have some symptoms that aren’t accounted for, but I’m just living with that remaining unknown. Getting diagnosed has not helped as much as I used to think it would because my symptoms are still out of proportion to the level of identifiable disease I have. For example, the amount of inflammation they found in my stomach and intestine shouldn’t cause me to struggle to gain weight as much as I do, so I still feel worried that doctors will suspect I’m anorexic.
Your reasons are quite different to mine, but living with a constant dilemma is very familiar to me.

I suppose that at least if you do end up having a serious complication they would have to treat you right away, and that may lead to a diagnosis. That would be a terrible way to have to get it though!