annie
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Aug 1, 2006 14:36:12 GMT -5
Post by annie on Aug 1, 2006 14:36:12 GMT -5
Hi there, not been on for a while with exams and stuff. Right, I had my laparosopy last Monday and the Doctor said everything looks fine in there? Anybody have any idea what is going on then? I am still in pain and now think I'm pretty much addicted to my painkillers too. I have all the symptoms of endometriosis but now people are looking at me as though I'm making the whole thing up, it's frustrating! I know it sounds really stupid but I wanted the diagnosis to just get on with it but I've been in this what the hell is going on state for neraly a year now and I just don't know what to do. Has anybody else had a similar experience? Is there anything else it could be? My symptoms are daily lower abdominal pain; unbelievable painful and heavy periods; constant tiredness; exruciating pain on intercourse or internal examination; inability to sleep at night; occasional chest pain. I am really confused, I have to go to clinic soon to discuss what he found (but because I'm friends with the nurse who looked after me I already know the results). I really am stuck now, I don't know how much more of this I can take! On a lighter note - I passed all my exams in medical school so I am step closer to starting to try and find a cure for this crap!
Any help would be great, need some reassurance and cheering up Thanks Annie X
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Aug 1, 2006 20:07:23 GMT -5
Post by erzulie on Aug 1, 2006 20:07:23 GMT -5
Well, my doctor told me that sometimes endoemtriosis is microscopic. She told me if she couldn't see any in me that she would do a random tissue sample and check it to see if it was endoemtriosis. She said that has worked before, but obviously it could be there and not show up in the random sample. She said if a person has all the symptoms of endometriosis but it can't be found that usually she will go ahead and treat her for endometriosis and just assume it is microscopic. In some cases the symptoms could also be something else and the patient might be evaluated for other possibilities. To me it sounds like endometriosis with you, so hopefully the doctor will consider the possibility that it is there but not visible. If he won't you might have to seek out a specialist.
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Aug 2, 2006 2:12:04 GMT -5
Post by ouchy on Aug 2, 2006 2:12:04 GMT -5
Hi, annie! Congrats on passing your exams! What erzulie said is correct. Also, you could have adenomyosis (endometriosis of the uterine wall), which would not be seen upon regular laparoscopy and is usually only conclusively diagnosed upon pathological analysis of hysterectomy (although occasionally conclusively diagnosed upon removal of fibroids). Anyhow, it wouldn't show up if the outside of the uterus were to be examined. Blood clots during menses are also common with adenomyosis, and if I remember right, you did mention something in one of your posts about blood clots and cramps.
Also, have you had any STD (sexually-transmitted disease) labs run? A lot of pelvic pain can be caused by STD's, some of which aren't even always transmitted sexually. Trich, for example, is now considered an STD, even though you can catch it from a jacuzzi or sharing a towel with someone harboring the bacteria.
Man. I guess a good thing is that you now know your tubes and ovaries are free (no endo on them). However, it is more tricky to know what is inside the uterus. My gyne. suspects I have adeno, but the surgeries for it are pretty rare, because it involves removing sections of the uterus and stitching it back up. It's a pretty hefty surgery, and most women are left w/ a misshapen, smaller uterus. Since I haven't had kids yet, I dont' think this would be a good thing for me.
Sorry this is rambling. It's pretty late here. Someone in our apartment complex decided to wake me up by playing the ukulele and singing... how random! Especially after midnight!!!
Anyway, sorry you don't have a conclusive diagnosis yet. I hope that you'll find some answers soon!
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annie
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Aug 6, 2006 1:44:16 GMT -5
Post by annie on Aug 6, 2006 1:44:16 GMT -5
Thanks for your help girls, I'll let you know something when I know something!
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Aug 6, 2006 21:17:34 GMT -5
Post by denna on Aug 6, 2006 21:17:34 GMT -5
hi annie,
ya i think we need an endometriosist specialist
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annie
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Sept 12, 2006 10:42:29 GMT -5
Post by annie on Sept 12, 2006 10:42:29 GMT -5
Ok so I have been back to see my lovely doctor (yeah right). He said that he has no idea what is going on so I should just get on with it and there is no point me being a patient of his anymore therefore he should discharge me. I was absolutely devastated. I really need to know what the hell is wrong. People are saying I am making it up, how can i be making it up when I am crying everyday with pain and bleeding non-stop? Every symptom seems to be getting worse and I am fed up of people rolling their eyes when I need to take another pain killer. My boyfriend is so fed up of me moaning, there is only so much he can take. I can't do things I enjoy anymore because I end up crying in public - which is definately something I would never do. I have been told that my pill is not effective enough so i have to go on higgher oestrogen, but I have always had bad side effects with oestrogen as it is. So I am no on my new pills and they have done absolutely nothing to help me at all in fact I sometimes feel I am getting worse not to mention I now have this wonderful headache which lasts for a week on top of everything else I have asked my GP if I can change consultants and he just smiled at me and ignored my request by laughing it off. I feel I am going around in circles I just dont have any idea what to do now somebody please give me some advice?
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Sept 12, 2006 13:26:34 GMT -5
Post by ouchy on Sept 12, 2006 13:26:34 GMT -5
Sorry you have to deal w/ all this crap. Is there any way you can pay privately for a different doctor? If you are constantly bleeding, ask for hormone tests, or you might even quit the pill and see if that helps? My constant bleeding quit when I quit the pill. I don't really know what to say. I'm sorry.
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annie
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Sept 13, 2006 13:47:23 GMT -5
Post by annie on Sept 13, 2006 13:47:23 GMT -5
Thanks for your reply. I did stop the pill for a month or so before my lap but the bleeding didn't stop and the pain got worse. I'm seriously thinking of going down the private route, not quite sure how I am going to pay for it though, full time student! In my next life I am coming back as a man
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Sept 13, 2006 14:20:02 GMT -5
Post by ouchy on Sept 13, 2006 14:20:02 GMT -5
Can you request hormone tests?
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annie
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Sept 14, 2006 5:23:57 GMT -5
Post by annie on Sept 14, 2006 5:23:57 GMT -5
Can you request hormone tests? Which ones? I don't know much about this. I had a blood test no so long ago for LH and FSH but they were normal. Is there any others?
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Sept 14, 2006 10:58:29 GMT -5
Post by ouchy on Sept 14, 2006 10:58:29 GMT -5
You might see if they can do an estradiol test. Sometimes low estrogen can cause continuous bleeding. ---And for those reading this who freak out over the estrogen crap, you CAN have endometriosis AND be LOW on estrogen. Either way, your doctor needs to know about it and take action. Continuous bleeding can also be a sign of cancer, etc. You should probably also get a blood test to see if you are low on iron, as you can become anemic from losing too much blood.
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annie
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Oct 9, 2006 15:33:38 GMT -5
Post by annie on Oct 9, 2006 15:33:38 GMT -5
I will have to ask about the estradiol tests, i am going to see the idiot man from hell next month so I'll ask him then. I don't know if I should be having a hysteroscopy if there is nothing visible on lap? I've had me FBC done to check for anaemia quite regularly but still being told I am normal even though I am permanently tired. I think I should have another one because I am losing so much more blood daily now, including clots. Came home from uni crying again today, we had a lecture on endometriosis which wasn't approached with any sensitivity at all! Thanks for all your help on this girls, you really are a rock for me
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Oct 9, 2006 19:44:49 GMT -5
Post by ouchy on Oct 9, 2006 19:44:49 GMT -5
Hi, annie. Sorry about your day!!!
You could ask for a hysteroscopy, but even if they do find adenoymyosis (endometriosis of the uterine muscle), the treatment for it is resection of the uterus--which not to many doctors are keen on doing, unless you have fibroids to go along w/ it or something.
Let us know what happens.
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