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Post by Karen on Nov 21, 2010 20:40:05 GMT -5
If it corresponds to endo pain, don't let your mind wander too much!
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Post by Shannon Elizabeth on Nov 21, 2010 20:47:07 GMT -5
I have to work so hard even though I realise I need the loo and I have to go right then, and it's taking a lot longer than it used to, and coming out in small parts. Sometimes I'm tired out or it won't come... but generally I can feel a bit like I haven't finished and my body is like 'meh, try again later' You know...I've been having this same problem too. Usually I have a couple bowel movements a day, normal, fine, whatever. But these past couple days I've been feeling like you...like its just not coming, but it needs to. I don't dare take anything because I'll get the runs if I do. I barely have to eat some flaxseed or drink a glass of fresh juice and my everything moves. So that's why I find this weird. I'm hoping its just a temp thing and it goes away in a day or two
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Post by cherry on Nov 22, 2010 18:31:12 GMT -5
My fingers are crossed for you Shannon, you sound like me in that it's too easy to set off loose BMs and that you normally have a good healthy routine. I can imagine you're finding it really distressing too right now, hugs and keep checking in and let us know how you are ok? I had to tell a friend today more detail of what I mean by not arranging a drink before xmas because I can't rely on my health. I'll be honest I've been avoiding thinking about it and trying to be factual and not panic when I talk to the doctor, but I bust out in tears when I wrote it all down. Reading it back I have scared myself silly and been ashamed that I can lecture people 'take care' and I'm ignoring some very worrying deteriorations in my own health. I'm gonna have to write it down (total scatterbrain) and see my doctor and get her to investigate it as a new separate thing from endo, even just googling the symptoms it came up with a few things and not one of them was mild or reassuring, MS and lupus and a tumour were top of the list. Not that I think it's any of these but that it's made me think 'just get it looked at'
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Post by Shannon Elizabeth on Nov 22, 2010 21:27:37 GMT -5
I was up all last night with all this pressure in my belly. It kept making me feel like I had to pee, and I get up and I don't really have to go. I had this before, but since going off wheat, I haven't had an issue, unless I mistakenly eat something with wheat in it. But yesterday all I had was a gluten free ciabatta roll with strawberry jam for breakfast, two sweet potatoes for lunch, and a fruit only smoothie for supper. So no wheat to be found there. I woke up with pain this morning too (and lucky me, it was my first full day back to work in THREE months) and had several bowel movements and then I was okay. Yuck. This is no fun.
I hope you get some relief Cherry...its so terrible what this does to us. I was talking to a coworker today and she had extreme bleeding when she had her periods. She was literally afraid to stand up, let alone go anywhere, because it just poured out of her. She ended up having an endometrial ablation. But she said the doctor only got to that point when she asked her, "Is this altering your life?" and it obviously was. Its so sad how all this is so life altering for us that it plain ruins just about every stinkin day!
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Post by cherry on Nov 23, 2010 12:39:18 GMT -5
I think when we have issues like this and we just try to cope and get into a routine with it, 'is it altering your life' is a really good question to ask yourself and a good way to present it, especially if you have a doc who is unsympathetic or doesn't know much about endo. Thanks My friend was horrified that I'd sat there and done nothing when it happened in work, it is valuable to have a none-endo perspective cos she said basically endo or not I can't let this go on, I realised it must sound terrible to someone who doesn't know the details of this disease. I slept 13 hours last night so wasn't up in time to call my doctor but I will do so tomorrow morning. My bms are a little better cos I'm going a lot (yuck is the word). Given that I've had endo screwing with my rectum before I will have to make sure I tell the doc, I'm worried it could be back and causing the difficulty with passing motions. The pressure and numbness never really feels ok does it girls, it's not like with pain where you learn to cope, it just feels wrong
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Post by chicagogal2 on Nov 23, 2010 12:58:50 GMT -5
Cherry, what are you taking for treatment of your endo right now? Are you on BCP? I'm back on antibiotics AGAIN. This peeing problem and rectal area discomfort is making me crazy! I'm about to loose it. I don't know where to turn to. I want this to stop already. Shannon - what are you currently taking for treatment? I'm about ready to throw in the baby making towel and go back on the pill - I have greatly declined IMO since going off and I'm not sure this is worth it anymore.
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Post by cherry on Nov 23, 2010 13:01:14 GMT -5
Yeah I take Yasmin (slightly different to Yas and the best for me due to skin problems and lack of side effects) and I take it for as long as possible. When was your last lap CG? I'm hoping to God they can find a way to help me that doesn't mean surgery, and the injections don't work on me so this is my only solution for the time being.
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Post by chicagogal2 on Nov 23, 2010 13:08:15 GMT -5
My first and only lap was in 2002. So it sounds like what I was doing then - I was on zovia ( not brand name but equals to something else brand ) and I would take it continual for about 6 mths, stop for a bleed and then resume again. I was great other than some spotting here and there. It sounds like you have other problems though despite being on the BCP - shouldn't the pill fix this all and put it to sleep sorta?
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Post by pretty on Nov 23, 2010 14:08:06 GMT -5
hey just to ask, is gluten-free the same as wheat free? don't they remove the gluten from the wheat? doesnt that mean the wheat is still there? just sayin..... could explain your pain if the wheat was there. make sense to anyone else?
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Post by cherry on Nov 23, 2010 18:09:11 GMT -5
Wish I could help pretty, I know nothing about wheat though You'd think so CG but when I met this gynae and he investigated my 'IBS' (my old gynae claimed I was cured by the injections and I had IBS even when I told him I poop like a trooper) he found I was stage 4 but that it came away easily and left no scarring on the important bits. He stated it was angry and aggressive looking and covered every visible surface, so they're not surprised to see me come back in, I just try to manage the symptoms as long as possible. My last op wasn't as bad it was more about stuff stuck together but the symptoms leading up to it were horrible. I will be really good after an op and then it pops back up and goes downhill really rapidly. I didn't respond at all to the GnRH agonist injections, the pill is my failsafe! I would ask my mother about her endo cos she was diagnosed then had a hysterectomy within 4 years when she was 33... we're very much not talking though, and she was pretty nasty and un-supportive about my diagnosis too. There's so much I want to know. Knowing the history isn't everything though, the support and advice from you girls more than makes up for that. Don't know what I'd do without you all
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Post by Shannon Elizabeth on Nov 23, 2010 19:24:02 GMT -5
I've been on Depo-Provera injections every 3 months since Dec 31 of last year. I had my last one Aug 16 and I'm due for one now, but I've decided to go off of it. It was terrible to my body! I couldn't do regular BC pills....tried a few different kinds and my body couldn't tollerate the estrogen in them. I'm going to go off everything and see what happens, but if I just can't manage having a cycle on my own, I think I'm going to ask to try the bio-identical progesterone pills like Karen takes and see how that goes.
But I saw a new doctor a week and a half ago. He only practices as a chiropractor, but he is also a natropath, internalist, accupuncturist and god knows what else. A jack of all trades. But he found I have liver and pancreas problems, a major protein deficiency, and all sorts of wacky stuff wrong with me that is helping to make me feel like the crap I do every day. We're taking it one step at a time. But he told me something interesting. Just like our body uses BMs and peeing to excrete toxins, it uses the menstrual cycle to do the same thing! When we lose the blood and lining every month, its getting rid of toxins. He said that a woman that may work in a really toxic environment for a month is more likely to have a really bad period and lots of bleeding and cramping because her body wants to get rid of all that crap. So he said coupled with my bad liver, and all the toxins I've been pumping in but not getting out properly thru my liver, he said no wonder I have all the bad pain I do cuz all that crap is wanting out. A different approach that I've never considered, but I believe it.
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Post by cherry on Nov 23, 2010 19:35:12 GMT -5
Shannon I completely agree with your doc, he sounds like an ideal person to see and it's great that he's identifying these issues. Hoping you feel tons better with the treatments he's planning. I've noticed that as well as alcohol having a bad effect on my mental state in the days following, and making the endo twinge more, if I have it just before or during a period, it really has a knock on effect. So besides avoiding sugar cos of sugar crashes (even though we tend to crave it more), I just try to eat 'well' during a period, mindful of the toxin theory as well as my nutritional needs. I don't remember where I heard it but I've always believed in it, it makes so much sense.
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Post by chicagogal2 on Nov 23, 2010 21:23:52 GMT -5
Ugh. I just don't know what to do. I'm going to see my old gyno, she was one of the top ones in chicago and I really trust her. I only stopped going because she was obstetrics and gyno and then she moved to just gyno to be with her family more so she said if I wanted a baby I should maybe switch to someone else. I'm going back to her for the endo though, the baby is getting further and further from my mind now. I'm so over not feeling well and being on the pill made me feel good, no pain, a little spotting here and there but other than that normal and stress free. I haven't been this worked up and upset in awhile. I see her next Friday.
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Post by cherry on Nov 24, 2010 7:20:45 GMT -5
Really hope that works out for you. If I could make it 2 years without a lap it'd be great, hats off to you for doing 8! My gynae also specialises in fertility, he has clinics here and Cyprus, I just hope he never gives up on his endo speciality because I would never see another doctor after him. Do you think you'll go back on the pill?
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Post by Shannon Elizabeth on Nov 24, 2010 11:54:22 GMT -5
The first thing that he said we need to do with me is build me back up. He said my body is too incredibly weak to treat for anything (like detoxing or cleansing) until we get it stronger. Otherwise I could just end up sicker. So his "prescription" was amino acids, L-Lysine, 12 a day for 5 days, and 3 a day until the bottle was gone (which ends up being another 10 days). Then I see him again next Friday and we'll start the next thing.
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