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Post by uncomfortable on Feb 13, 2010 19:15:24 GMT -5
I just had my first Lap yesterday. I don't have the whole operative notes, but from what my mom was told after my surgery I am completely clean and clear. My organs are in tip top shape and everything looks the picture of health. I am relieved to be healthy. But I don't really know what to feel about my doctor not having found anything at all. I have been suffering severe pelvic pain for 9 years, and I have had every other test done, all with negative results. I feel really drained over all this. I have poured so much energy into finding out what has been causing the pain. Endo, while a terrible thing to have, was my last hope at an answer. I have changed diet, I have tried heat, birth control, other pain killing drugs (which have destroyed my stomach as a result) I simply don't know what to do anymore. I am exhausted. I just want all this pain to go away.
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Post by Karen on Feb 13, 2010 22:04:43 GMT -5
I'm sorry you're still without answers. That has to be completely frustrating and defeating and I don't know what else to say.
I hope you're recovering well! Whatever is going on inside of you, we'll still welcome you around here, k?
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Post by uncomfortable on Feb 13, 2010 22:53:57 GMT -5
Thanks Karen.
I don't know, I think I just need to heal up and keep on trucking, but the way I feel lately I just want answers. Hopefully my post op appointment will give me some more direction (in 6 weeks :s )
As far as recovery, I think I am doing OK. I didn't have any of the gas pain everyone has spoken of, so that is a nice plus. I am a bit swollen and bruised, but that is to be expected.
UGH! this all pretty much sucks for me. I can't believe things are STILL coming back negative. (although it is still probably a good thing)
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Post by hellsbells on Feb 14, 2010 6:14:36 GMT -5
Aww I understand the mixed feelings, it went the other way for me, I got the diagnosis, which was a relief aswell as a bit scary. Have you been down the gastro route and had that side of things checked out? Don't give up looking for answers, and don't let your doc give up. We're still here for you, we all understand relentless pain, regardless of what's causing it. Big hugz xx
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Post by Karen on Feb 14, 2010 8:05:26 GMT -5
Yeah, I can imagine. Has your doc considered adenomyosis? I don't know much about it, but basically, it's considered endo within the uterine walls, and I believe sometimes it can be hard to detect. The bad news is that it's often diagnosed via biopsy after a hyster (Pamela may be able to tell you a bit more as she was diagnosed with it). I know a diagnosis is so important to healing and moving on, but keep digging around with your allergies, etc. Perhaps that might uncover some sort of relief along the way! And there's always pelvic physical therapy, acupuncture, traditional Chinese medicine, etc. to consider. Find a good practitioner and see if they can offer any relief! Remember - those try to treat the root of the symptoms (which can often seem a bit far-fetched at first)! Chin up and wishing you a speedy recovery!!
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Post by uncomfortable on Feb 14, 2010 14:56:06 GMT -5
Thanks for your support Karen and Helen I haven't discussed Adenomyosis with my doctor. I don't know too much about it either. I am feeling a bit better after a good nights rest. It just kinda hit me hard yesterday when I realized exactly what I have put myself through in search of answers. What all of you have put yourselves through too! I am starting to heal well. My stitches are getting itchy which is a good sign, and my swelling has gone down. You might have something there Karen about all my allergies. Perhaps they are a larger culprit then I have thought all along. once I am healed up I am going to have to start exercising more too I think. The one thing I have been thinking about the last couple of days though, is that I have been on Provera for 2 months, and it has been helping decrease the bleeding a lot and as a result has helped with pain. I am probably grasping at straws here, but I was wondering if having been on Provera before my lap could have interfered with what would be seen inside me? I don't know. No time to dwell I suppose. I really appreciate your support (even if I don't quite fit the club guidelines )
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Post by hellsbells on Feb 14, 2010 15:50:12 GMT -5
I guess it's possible, but my God it would be a fast worker if it did! I doubt it would clear up that quickly though. And you may not have the endo diagnosis but you have the symptoms, so we're right there with you!
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Post by KSA on Feb 14, 2010 17:05:04 GMT -5
I am so glad Karen mentioned adenomyosis I found out only after having a hysterectomy that I had that also. It is so close to endometriosis infact my doctor said it like having endo on the inside of your uterus. Mine was covered inside and out. Endometriosis and Adenomyosis have very similar symptoms. A surgeon can do a biopsy of the uterus either at hysteroscopy or at laparoscopy. They also measure your uterus and touch different spots for signs of the disease. It is sad to say tho with this disease the most common way of treating adenomyosis is hysterectomy. Myself and Pam both had already knew we were going to be reomoving our uterus and when i found out that I had this disease also I was not in any way shocked. My doctor did tell me that even if I would have choose to have a excision surgery with my endometriosis I would have still had the issues with adenomyosis. Removal of the uterus is the ultimate treatment my doctor uses for this particular disease however if you are able to take certain drugs they can prolong the surgery. I hope you get a answer soon until then ask as many questions as you can to your doctor. We are here to support you too. Good Luck and glad to hear you are recovering and ready to exercise.
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Post by pamelaj on Feb 14, 2010 19:17:09 GMT -5
Adenomyosis is terrible. It is endo of the uterus as Keri said, is generally only found after a hyster or via hysteroscopy. Did your surgeon do that? If not, they can actually be performed in a medical center and not in an OR. It is day surgery where they go in and take a sample of the uterus. Adeno can be so microscopic that it is NOT visible to the naked eye. Keep your chin up and im glad you're still searching for answers. Feel free to ask questions and I will do my best to answer.
Pamela
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Post by uncomfortable on Feb 19, 2010 19:21:50 GMT -5
no, my doctor didn't do a hysteroscopy. We were both sure that endo would be found. I fit so many of the symptoms. I haven't had my post-op appointment yet though so I still don't really know exactly what she did and didn't see. I am only going off of what I was told by my mom afterwards. I am very thankful if I indeed do not have endo, and I really feel for all of you who do. Its a terrible thing for anyone to deal with. Now for me its just a matter of keeping up the search to find out what is wrong. My doctor suggested stress to be a possible factor. I don't know about this being the cause of me nearly passing out on a monthly basis due to extreme pain, but what do all of you think? Do you think Stress can be a factor, and to what degree do you think it plays in the extent of the pain. As for the Provera working that fast, yeah I didn't think so either. I have been on birth control and then provera non stop since July, but I was still have excruciating pains in October. The intensity started to settle down in late November and December was a lot lighter, and less crampy. January has been my easiest period ever with no need for Tylenol or anything else. BUT I was also barely bleeding, thanks to the Provera. You have definitely given me something to look into with the Adenomyosis though, and I will ask my doctor about it when I see her next. Is there a certain age of onset known for that, or is it like endo in that it is only discovered in older women? thanks for all your support
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Post by hellsbells on Feb 19, 2010 20:46:24 GMT -5
DOn't know so much about that, but don't forget endo can be microscopic. Were any biopsies taken? I had probs when I was a teen, started bcp at 17, things ok til 29 ish, came off bcp and everything had got steadily worse still. Don't give up looking for a cause, and we're all here for you in the meantime xxx
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Post by Karen on Feb 21, 2010 14:19:33 GMT -5
My doctor suggested stress to be a possible factor. I don't know about this being the cause of me nearly passing out on a monthly basis due to extreme pain, but what do all of you think? Do you think Stress can be a factor, and to what degree do you think it plays in the extent of the pain. Although I think stress could aggravate the pain (it does for me), stress certainly wouldn't CAUSE pain and horrible periods. Don't let anyone suggest that the pain is all in your head, k? I'll never forget my surgeon looking at me in the eye and telling me she knew the pain wasn't all in my head. She said 'if it were all in your head, why would you pick THAT very specific spot to have pain?' Good luck with your post-op, and don't be afraid to have your doc explain the surgery report line by line so you understand everything!
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Post by uncomfortable on Apr 9, 2010 17:34:46 GMT -5
So, on paper I look healthier then the average, which is a great thing, so why do I always feel sick?
I have had blood work done for all sorts of things, everything always comes back "normal". I had a lap done, nothing was found. I have "a pelvis to be proud of". My family doctor keeps asking me questions every time I go see her, to access me for stress - which I admitted to being stressed over feeling sick. there is nothing that anyone can find that leads to any reason to always be nauseous, and to get really painful menstrual cramps. I don't know what to do anymore. No doctor thinks anything is wrong with me aside from maybe being a crazy hypochondriac. But all my symptoms have been so consistent for such a long time, and they are all so undesirable, why the heck would I want to make them up. I am doubted by my doctors so often I have begun to wonder myself if I have somehow created all these symptoms. What am I missing. I *know* there is something not right with me. I feel it. I don't want to give up on finding out what is going on, but gosh darn it I'm sick of health care professionals looking at me like I should be pitied for the things I am imagining are wrong with me.
I know none of these questions can really be answered by any of you, but I just needed to vent them.
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Post by Karen on Apr 9, 2010 18:17:30 GMT -5
Vent away! Something may not be 'visible' on any test right now, but keep persisting. You don't go from healthy to unhealthy (based on test reports) overnight. Good to see you around again!
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Post by uncomfortable on Apr 9, 2010 18:49:59 GMT -5
thanks Karen,
Things have been a bit crazy with me lately, between feeling like crap and getting no answers to life and the things I have been putting off catching up with me. I am still sort of around, just a bit pre-occupied most of the time.
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