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Post by ouchy on Apr 8, 2006 1:06:22 GMT -5
UGHGHGHG! Sorry for venting here, but that's what this room is for, right! Well, for a week now I have been having pains like I felt before my last lap, when my intestines were all twisted from endo, as well as my sigmoid colon all twisted to the side and glued to my pelvic cavity wall.... So, I told my husband that the endo is back. I'm having extreme burning radiating all throughout what I have come to know as my sigmoid colon (I know this from the times I have had the endo lasered off and the difference in pain before and after and where it recurs.). HEEEEEE had the nerve to tell me that I'm not a qualified doctor and I don't have the right to "make that assumption" that the endo has recurred and is right where I say it is! I tried to explain to him that I can tell where it is by how it feels. I asked him if he had ever cut himself with a razor (what I explain endo to feel like, that or a knife twisting inside) when shaving his face. He said that he had. I said...okay, and when you sliced your face w/ the razor, you didn't say your knee hurt, right?! I confirmed that he could pinpoint exactly where he had sliced himself w/ the razor just by the pain and feeling. I started crying, and now I am here on endo-resolved. He wound up telling me I could send my file to Dr. Redwine in Oregon and that we'd pay for the surgery out of our pocket, since we know that our HMO wouldn't cover it. I don't know if I feel safe with excision, but I do know it has the best results as far as recurrence, and Dr. Redwine has been doing nothing but endo excisions for over 25 years now. I just don't know.
Ohhhh. And my husband tried to make me feel like a hypochondriac (which didn't make me feel any better) by bringing up that I once thought I had multiple sclerosis and had an MRI to rule it out. He failed to realize that I had gone to the E.R. with muscle spasms and tremors. I also have one pupil which is slightly larger than th other, and my pupils don't dilate in tandem, so the E.R. doctor put all of those together and decided to order an MRI to rule out multiple sclerosis. Luckily it was negative and the tremors were just due to Zoloft, but I only got the MRI done because the doctor ordered it! At no time did I go to a doctor seeking a diagnosis of multiple sclerosis! I didn't even know fully what that was!
I hate when people try to make me feel like a hypochondriac when the only thing wrong w/ me is endo, and doctors even told me a hypochondriac when they didn't think I had symptoms of endo, because they were ignorant! Thank God I finally found a doctor who listened to me; however, I think he is going to be against the excision surgery. I know that the laser surgeries I have had haven't stopped the endo from coming back, so I thinking I am running out of options.
Sorry this is so long and talking in circles. Thanks for reading. ~ouchy
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Post by erzulie on Apr 8, 2006 13:35:43 GMT -5
I'm sorry ouchy. That really sucks it's frustrating when people say there is nothing wrong with you and you KNOW there is. The shaving thing was a good analogy. As far as I can tell endometriosis always comes back, I mean whatever's wrong with us that makes it be there in the first place isn't going to go away just because we get the tissue removed. Excision makes it stay away much longer though. I've heard of people staying pain-free for over five years after having excision. I think it you go to a competent, experienced doctor that excision really isn't more dangerous than lasering--after all, stuff goes wrong with lasers all the time. As you said, Dr. Redwine's been doing it for ages, so I think you'd be in good hands.
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meka
Full Member
Posts: 164
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Post by meka on Apr 8, 2006 21:48:13 GMT -5
How infuriating! You'd think he'd be more believing since he knows you've been through this before. I'm sure you've told him how endo works in our bodies, so he shouldn't be treating you like a hypochondriac. The fact that he knows you study the human body probably makes him feel like you think you know it all. I'm a teacher, and people have told me that I think I'm an expert on learning. I'm far from it. But when you have studied something, then you know a little about it. And when you have personal experience, as you have with these pains, then you know a lot about it. Hopefully this was one of his humanly-weak moments, and he'll be supportive again soon. He's probably frustrated, too. Endometriosis does indirectly effect the lives of our loved ones, coworkers, and more. And I'm very sorry to hear your pain has returned. I stopped off at the health store today and picked up some Black Cohosh, thinking, "If it worked for Ouchy, it could work for me!" At least you had a month or so of freedom, right?
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Post by ouchy on Apr 9, 2006 1:19:11 GMT -5
Hey, guys. Thanks for everything!!!
Meka, I'm still taking the cohosh. I'm sure it is still going to make my period less painful! It's still helping a lot with coming out of my birth-control fiasco.
It may not even be that the endo has returned to my intestines and colon. I ate some bacon and scrambled eggs about 2 months ago, and I scrambled the eggs in the bacon grease----bigggggg mistake! My intestines were all spasming and it was hell for about a week, and maybe it is possible that they just got stuck in some scar tissue left over? I'm not sure. I also had a whole lot of oreo cookies last week before all of this started, and I know those mess up my tummy really badly, so maybe that started this mess this time? Who knows. I guess I won't know until I'm opened up.
One scary thing though, is that during my last lap, my belly button got messed up. It's all stitched together (I have to have a plastic surgeon fix it!). The scary part is that to the right of my belly button, I started having cramps today, and it feels more superficial, not deep like the endo on my intestines or wherever it has been in the past. I will be PISSSSSED if I find out that my doc. did such a hurried job that not only did he stitch my tissues underneath my belly button wrong, but that he also was careless and spread the endo into his stitches! Time shall tell!
GRRRRRRRRRRRRRRR! I should have been born a boy! ...but then I couldn't wear cute skirts! hehe
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Post by ouchy on Apr 11, 2006 22:09:03 GMT -5
update: I feel sooooooooo much better. I upped the fiber to twice daily. I think my bad tummy was triggered by eating all of the Oreo cookies I ate...I ate about 12 to 15 of them at one time! I've noticed that whenever my tummy gets triggered, I hurt like that for at least a week. I'm guessing that the endo caused the IBS, which was triggered by the Oreos or whatever I ate. I have doubled my fiber for several days now, and today I am back to having no pain! Yayyyyyy! Let's just see how this month's period goes! Thanks for being there for me, girls! Love you all! ~ouchy!
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candy
New Member
Posts: 9
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Post by candy on Jun 14, 2006 16:38:39 GMT -5
You know, I have a wonderful hubby. BUT....he just does not understand. He'll say things like "are you hurting today? because you have not complained for a few days so you MUST be having a bad day today"....that hurts my feelings. Before I was officially diagnosed with Endo, everyone kept telling me not to think about it, no reason to talk about "what if's" ,it'll be just fine etc You know what? I was RIGHT.....and no one let me talk about it when I knew exactly what it was. They made me feel like I was a hypocondriac because I thought I had Endo. I try not to even talk about it to people at all....they just dont get it! Ouchy: Glad to hear you are feeling better!!!!!!
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Post by ouchy on Jun 14, 2006 16:46:44 GMT -5
sorry, candy. i know EXACTLY how you feel! it hurts the most when the criticism comes from those we love!
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lilyloves
New Member
sunshiney mind
Posts: 28
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Post by lilyloves on Jun 17, 2006 10:52:04 GMT -5
Oh tell me about it. They've seen you cry, watched you research it to death, lamented with you over the difficulties with fertility and treatments that work. Thye've even filled hot water bottles and held your hand when you cried but still don't grasp how you feel about it, or realise that you're halfway to being a gynaecologist cos you know so much about it! xXx
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Post by ouchy on Jun 17, 2006 11:13:21 GMT -5
Exactly! Here!Here!
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candy
New Member
Posts: 9
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Post by candy on Jul 17, 2006 15:12:33 GMT -5
Yeah, my husband thinks I research too much and self diagnose. But really, I tell him I keep waiting for the Dr.s to tell me something I DONT know already.
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