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Post by jennapurr79 on Oct 18, 2006 13:55:54 GMT -5
Today I see my gyn and I'm nervous. I'm afraid I'll walk in there and forget all the questions I have and not be fully prepared to deal with it all and I'm afraid I'll be talked into a treatment that I'm not okay with. The biggest problem I have is how do I approach the doctor about pain management? I'd love something other than vicodin for pain management (I've heard neurontin works) but I doubt I'll be given anything but vicodin. And now my stomach is so bad I have no idea how to deal with it. Today is such an important appointment and I feel so unprepared!
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Post by candice on Oct 18, 2006 14:39:47 GMT -5
At least you aren't afraid of crying like a baby. Thats what I did and I was so embarassed. Just remember that a Dr. is just another person. If you mess up, call him or her back. You could probably ask the questions you forgot right over the phone.
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Post by erzulie on Oct 18, 2006 16:01:43 GMT -5
It's very important to always write out a list of questions and take it with you to important appointments. Before my laparoscopy I typed up a list of questions and brought in a pen so I could write down the answers. The doctor seemed impressed that I was so prepared! Then I didn't write down questions before my post-op visit and I completely forgot to ask most of them. I still don't know the answers.
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Post by ouchy on Oct 18, 2006 19:38:27 GMT -5
^ditto.
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Post by jennapurr79 on Oct 18, 2006 20:45:04 GMT -5
Well, I just got back from the hospital. It was a very long appointment, but in a nut shell this Sunday I am having a transvaginal ultrasound done and I am having some blood tests done. If they can clearly identify any mass that needs to be removed via the ultrasound they will go ahead and perform a lap right away. If not, then they want to immediately start me on Lupron. They are convinced it is endo, and that unless they can find something from the transvaginal ultrasound that they do not want to perform a lap because they feel it is unnecessary. They are also worried that the longer I put off treatment the more damage will be done. I saw a completely new doctor and he confirmed that it is not uncommon to diagnose endo without doing a lap, and based only on a pelvic exam, TVU, and family history. I did ask A LOT of questions and got the answers I wanted. My doctor did say though that if you ever are having a heavy period and feel lethargic and light headed to go to the ER immediately because you could be dangerously anemic and need a transfusion. Right now they are testing my blood to see if I need one. This is the short version of the app. but they did say that if the Lupron does not work and all other options are exhausted that they will perform a full hysterectomy. I feel good about today and I feel much better about starting treatment. Thanks for your support everyone!
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Post by ouchy on Oct 18, 2006 21:54:33 GMT -5
Wow. Well, please do read the threads on Lupron. From everything I've read/friends who've been on it telling me as well, after cessation of the drug, the endo comes right back. It would be quite tragic, in my opinion, for someone who has never even been properly diagnosed to wind up having a hysterectomy--because of endo--when endo has never even been looked for! In fact, a hysterectomy is a major surgery as compared to a simple laparoscopy. That would be sad for a doctor to agree to remove someone's uterus--without even knowing if there is any endo at all, which would only take a scope! WOW WOW WOW...I can't believe so many doctors out there are so haphazardly "diagnosing" ...let alone haphazardly "TREATING" endo!
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Post by candice on Oct 19, 2006 4:46:10 GMT -5
I had a transvaginal ultrasound in August. It was painful, embarassing and showed clear. My Dr. said that I was normal and healthy. I cried and he sent me to a gyno. She told me that the transvaginal ultrasound was a good idea becuase it eliminated a lot of other possibilities, but that it did not eliminate the possibility of endo. In fact, she was sure that endo is present. I am going in for a lap on the 3rd. I'm just saying all this so that you can see where I am coming from. I thought laps were totally necessary to diagnosing endo? ?
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Post by katie35 on Oct 19, 2006 7:07:30 GMT -5
Goodluck to you! I am going through the same symptoms as you and my appointment is tomorrow. I will let you know what my Dr says. Every Dr seems to have different ways of treating endo. My regular Dr moved as I have said before and I feel so depressed about losing him. He was the best Dr and so understanding. He always calmed my nerves when I was scared. It's strange how attached you can get to a Dr. He also delivered my 6 year old boy, so I felt very attached to him. Now I have to go through explaining the whole mess over again to someone I don't even know. I dread it, but I also need some answers, so I will be glad to get it over with.
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Post by ouchy on Oct 19, 2006 9:22:31 GMT -5
I thought laps were totally necessary to diagnosing endo? ? They are.
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Post by jennapurr79 on Oct 19, 2006 15:00:15 GMT -5
I have had a total of 4 doctors diagnose me this way. All of them said that it is fairly common to get a diagnosis like this if all symptoms are present, by having an exam and if family history is present. Yesterday he did acknowledge that a lap is the only real way to diagnose it but he said in a lot of cases even with a lap they can't find the endo and women have the surgery for no reason because the implants can be so small that the surgeon misses them or they are in places that they can't get to etc. He then said that if they went by that standard alone there would be some women out there with endo not being treating because of a clear lap. He also said even if I have a lap that chances are I will have to be treated with Lupron or some type of med like it afterwards. The transvaginal ultrasound is to rule out any large masses or abnormalities. If something is found via the ultrasound then they are going to go ahead and do a lap right away. If it comes out clear then they are going to go ahead and treat me with Lupron and then go from there. The doctor did a much better job explaining everything than I did just now but it all made sense at the time. He also said the longer I wait to start some type of treatment the more damage will be done to my body. I know a lap is supposed to be standard, but I have exhausted all my options as far as doctors go because of the insurance I have and I can't put off treatment much longer. I just have to let go and hope for the best.
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Post by erzulie on Oct 19, 2006 15:53:14 GMT -5
Everything your doctor said is true, but he left out the fact that other things can cause pretty much the same symptoms as endometriosis, including ovarian cancer, and those things can be diagnosed or ruled out with a laparoscopy. If nothing were found during the laparoscopy, it would be reasonable to figure based on your symptoms that you most likely have endometriosis and should treat it as such. Microscopic endometriosis is rare though, and so long as he can find it he can TAKE IT OUT, which is a bit more helpful than Lupron which just shrinks the implants (and your bones...I hope he mentioned that part). So I would have to say I disagree with him, both about the surgery being a waste of time and about the Lupron being a great treatment (90% of doctors think it's wonderful while 90% of patients hate it, or so it seems). Please research Lupron as much as you can before you take it. It can be a very dangerous drug. I know you probably would rather believe that Lupron is a miracle drug without side effects because that would be GOOD news which is what everyone always wants to hear, and it would mean you could stop worrying which is what everyone wants to be able to do. But if that were true, we'd all be on Lupron and we'd all be singing its praises and urging you to take it. It would be better to do the research now and at least know what your risks are when you take it than to go blindly into this and have your hopes miserably dashed. I'm not saying Lupron won't work for you because it does work for some people, but I do think you should consider it carefully. Personally the stuff scares the hell out of me, and if you read the thread on Lupron (if you haven't already) you'll understand why.
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Post by jennapurr79 on Oct 19, 2006 18:12:37 GMT -5
I have already read the threads and looked all over the internet and I know all about Lupron which is why I had asked him about all alternatives first. I wasn't given any. I know that what he said isn't exactly what I want and should hear from a doctor, but as I said, since I have county insurance I have no other choice than to see the doctors that they allow me to see. They all said the same thing. I was denied disability and every insurance I have tried to apply for has denied me. No one will let me buy insurance and my credit is shot from not being able to work so I can't get payment plans. That being said, I can do one of two things:
1. Take the Lupron and hope that it helps
2. Take nothing and keep living with the pain
The doctors already said they are cutting off my Vicodin prescriptions and this is the last one I will be getting. I'm in a very hard place right now. If I am lucky, something will show up on the trans ultrasound which will make them have to do the lap. That is what we are all praying for...but unless they find something my only option is drug treatment and they want to give me Lupron monthly. I really don't know what else to do?
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Post by erzulie on Oct 19, 2006 20:03:03 GMT -5
There are a lot of natural treatments you can try. You can read a lot about people's experiences in the "alternative treatments" section. You can also read about one natural treatment, progesterone cream, in its own section although that doesn't do much good by itself. If you are going to do Lupron the monthly injection is probably the best, at least that way if you decide the side effects are unbearable you don't have to live with them as long. There are a lot of us who are neither taking Lupron nor doing nothing, so those are by no means the only options.
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Post by ouchy on Oct 19, 2006 21:35:25 GMT -5
Wow. Well, Good luck with everything.
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Post by ouchy on Oct 19, 2006 23:53:36 GMT -5
There are a lot of us who are neither taking Lupron nor doing nothing, so those are by no means the only options. I've actually found this to be the least painful of the options!!!! Sounds weird, but those fake hormones screwed me up BIG TIME! I actually feel GREAT compared to when I'm on the synthetic hormones. For me, living w/ endo w/out trying to manipulate it w/ drugs has been easier than treating it (pain-wise).
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