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Post by ouchy on Oct 22, 2006 18:42:39 GMT -5
Something else I thought about...if a doctor haphazardly diagnoses you with endometriosis without doing a lap...then it is in your medical records that you have endometriosis, which might lead to some troubles down the road insurance-wise since you'll be labeled as having endometriosis. If you have a lap and it turns out that you actually don't have endo, then you don't have endo on paper, whereas a haphazard diagnosis will show on your medical records as endometriosis...even if it is not for certain.
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Post by jennapurr79 on Oct 23, 2006 0:44:06 GMT -5
If my doctor doesn't do a lap then I am HOPING that when I see the GI doctor that maybe he will find something. Well, not really hoping but if it is endo that is causing all of this then at least I would know for sure if the GI found something. At first I didn't want the lap and now I am scared that it's not being offered even though it's very likely that I have endo. I can't think of what else it could be and every other test came out negative (cancer, IC, UTI etc.) This disease is so confusing...
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Post by normadesmnd on Oct 23, 2006 8:33:50 GMT -5
my step-mom had a lower GI done due to excruciating pain. the drs. thought it was diverticulitus and operated for that. once they were in there, they found it was endo. strange stuff. what they thought were pouches in the intestine, were actually endo on the outside of it.
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Post by vatechgrad on Oct 23, 2006 13:31:19 GMT -5
I had my lap to rule out anything more serious. Yes, endo sucks but it isn't cancer or anything else thats going to kill me. I didn't want to assume it was endo I wanted to be sure it wasn't something else. I had mine over a year ago and I've had very little pain since. I still have crampy days (my cramps feel like labor) but nothing to awful. I didn't do any meds for it as I didn't want menopause this young, I just felt that would be even worse since there was a chance wouldn't help pain but would most likely make me crazy as bc pills make me crazy.
Janet
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Post by macymoo on Oct 23, 2006 13:44:31 GMT -5
My Dr has thankfully not mentioned the word endo in an letters to me...until I have the lap we are calling it PID (pelvic inflammatory disorder) or something as that is not classified as a chronic condition. I then can be monitored via ultrasounds etc and still be covered by insurance. My dr calls it endo to me though.
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Post by jennapurr79 on Oct 23, 2006 14:14:12 GMT -5
I am already in the hole as far as insurance goes. I can't buy it because no company will give it to me in my condition so I have to go through the County to get my insurance. I'm not sure what is on my records but I have heard the words, IBS, IC, IBD, PID, UTI...you name it. I can only imagine what my doctors have written down in the past that is completely false. I feel like I am the only one with completely incompetent doctors!
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Post by ouchy on Oct 23, 2006 20:48:47 GMT -5
until I have the lap we are calling it PID (pelvic inflammatory disorder) or something as that is not classified as a chronic condition. And did he tell you that PID is caused by STD's? So by your doctor helping you avoid a possible diagnosis of endometriosis by calling whatever is wrong "PID," you now have a history of STD's in your medical record? PID can usually be determined by case history, positive culture for chlamydia or gonorrhea, ultrasound, and in some cases...a laparoscopy may even be necessary to diagnose PID. If you've never had any STD's, you might talk to your doctor about finding another "catch-all" diagnosis. Here is the CDC's webpage on PID. www.cdc.gov/std/PID/STDFact-PID.htm#What(P.S., I was intrigued to learn about PID in one of my science classes in college. I sat next to a nurse practitioner on a plane who happened to have retired from Planned Parenthood in a rough part of California. I asked her if she had ever heard of PID being caused by just simple bacterial vaginosis (overgrowth of healthy vaginal flora). In her 30 years of working with every kind of STD imaginable, she had only seen PID caused by gonorrhea and chlamydia.)
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Post by erzulie on Oct 23, 2006 21:25:45 GMT -5
Well, PID isn't ALWAYS caused by STDs. It usually is, but there are rare cases where people get it without having an STD, so it doesn't necessarily mean that.
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Post by ouchy on Oct 23, 2006 23:33:58 GMT -5
^ No, but from every doctor I have asked (I was a bit worried after having bacterial vaginosis--overgrowth of normal bacteria--for over 2 years that it would lead to PID), none have ever heard of just normal bacteria causing PID.
Sadly, from what I have read and heard, the CDC classifies PID as an STD--no matter from which bacteria it was caused. And the Planned Parenthood nurse also had never found a case of PID caused by anything other than an STD in all her years. It doesn't HAVE to be caused by it, but the CDC still classifies it (medical journals, too) as an STD from what I've heard/read, so I'm assuming having it as a diagnosis code in your insurance files will aslo lead back to the insurance company/any other doctor who reads the file to see it as an STD.
It's also sad that NSU (non-specific urethritis, which itself denotes that it's not caused by a common STD) is now considered an STD, as is trich, which is widely known CAN DEFINITELY be sexually transmitted, but can still be passed in non-sexual ways such as in jacuzzis and sharing bath towels!
Something else that pisses me off is that insurance companies a lot of the time won't pay unless there is a diagnosis. Even if something isn't wrong, most of the time they require a diagnosis to pay for certain procedures. I see it at work, and it really infuriates me! Even authorizations I've seen that have come from doctors' offices that obviously had no way to test for something come complete with a diagnosis!!!! To me, THAT is wrong! I even called up an insurance company to ask about it, and I was told that the test can't be authorized w/ out a diagnosis!!! WTF!?! So people are often being diagnosed in order to get an authorization to be tested for exactly that thing!!! I had NO idea this was going on, and now it just makes me sad and frustrated! I wonder what all my records say! ..that's my little soap box for the night!
And macymoo, sorry if I have flipped out on this. I'm definitely not saying that you have/have ever had an STD. I just wanted to bring that to your attention, in case that bugs you, the chance of having that in your files.
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Post by macymoo on Oct 24, 2006 6:39:18 GMT -5
no probs ouchy:) Maybe insurance companies work differently in the UK. They will not pay once you are diagnosed with a chronic condition. If you are not diagnosed or have a general non-specific thing like inflammation you will be covered for as many tests as you want until a diagnosis is made. I haven't got STD's (I would just like to clear that up!!!) but my dr said that PID is a general non-specific inflammation in the pelvic area, if they find the cause after tests etc then the insurance company will look into whether the cause is chronic or a one off. So we are calling it PID until the cause is found (although we really know it is endo) As you have said the only way to confirm endo is via a laparoscopy so until I have that procedure there is no confirmed diagnoses, so I can keep being investigated an monitored. You can even be treated without a diagnosis in some cases, for example I have low blood pressure which I am being treated for via fludro cortisone and as there is no condition name associated with the low blood pressure so my appointments with the specialist etc are all paid for and so are all the tests. Also I have CFS which although it is a chronic condition because there is no way of properly diagnosing it everything I have done for that is a covered as looking for reasons for tiredness and various symptoms.
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Post by ouchy on Oct 24, 2006 9:28:12 GMT -5
but my dr said that PID is a general non-specific inflammation in the pelvic area, if they find the cause after tests etc then the insurance company will look into whether the cause is chronic or a one off. Wfwew! You're lucky you're not in the U.S. Here, our centers for disease control considers PID treatable w/ 2 types of antibiotics! I think the U.K. has the right idea!!!
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Post by needadvise on Nov 18, 2006 11:19:04 GMT -5
i have been doing the same thing, and having any other test just to avoid the lap one. i had a raised CA-125, but my obgyn says that can be slightly elevated like mine, for many reasons, and have lots of false ++'ves, and so he doesn't suggest a lap, both dr's suggest pregnancy before a lap.
anyway ouchie are you saying endo can become so bad, it actually turns into cancer in some instances? iam awaiting my brach 1 and 2 tests, i so hope they come back alright, but ovarian cancer is big in my family.
my mom had endo and a lap and said it wasn't worth it to her, but she was done having kids. i am going to a urologist to make sure it isn't a bladder realted thing, hwoever endo on my bladder makes more sense, cause of the pain, the family history, and ibs etc. it just sucks..i really would rather not have surgery have a baby, and then go on BC....that is what i might do, if things pan out that way. no dr has pushed this procedure on me/
i have not had a cat scan or MRI done...what is the chances of spotting endo on these tests?
hugs, michelle
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Post by needadvise on Nov 18, 2006 11:21:49 GMT -5
ps- iam trying to get life insurance now, i hope there is nothing awful written down in my paperwork, since i have not been officially diagnosed, just proboble diagnosed.
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Post by needadvise on Nov 18, 2006 11:26:20 GMT -5
yes....my CA-125 came back 'slightly' elevated, but he didn't give me a #, which my obgyn wants the # and i wanted the test re-done, cause on was on day 5 of my menses, and i read that can cause raised levels, and so i was worried over that friggen test for awhile, and it may be a false positive anyway. they aren't rare, but they won't let me re-do it, i guess he thinks the ins. company may not pay for it. i just had a comprehensive brach 1 and 2 blood work done for $3,000 (eek), and haven't gotten those results yet but those are for cancer risks.
i read raised ca-125 means you can have advanced endo, and till i read about the false positives i was buggin out. noone has been forcing the lap on me, eventhough iam ttc. iam scared of it, but so far my GI noone can find anything else wrong, but i do have major GI problems. GL hugs, michelle
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Post by ouchy on Nov 20, 2006 23:34:51 GMT -5
anyway ouchie are you saying endo can become so bad, it actually turns into cancer in some instances? iam awaiting my brach 1 and 2 tests, i so hope they come back alright, but ovarian cancer is big in my family. I don't think I said anything about endo turning in to cancer. Erzulie posted a thread on endo and cancer if you want to read-up on it.
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