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Re: Newbie to this board, referred from Resolve. Having endo, cyst, gastro issues - Warning TMI and very longFrom: Alice (anonymous@obgyn.net)Mon Mar 20 19:00:58 2006
At Mon, 20 Mar 2006, Jaime wrote: > >Hi Tara, >I just saw your post on the Resolve board and then came here and found >this one. I just wanted to let you know that you are not alone in this. >I have almost the exact symptons and I was Dx with stage 4 endo in Aug. >I however have been dealing with the gastro problems a lot longer. I >thought I had IBS, but now know it's realted to the endo. I don't have >fix to offer you, since I can't seem to control it either. I know you >can find special diets for IBS, and this might help some. Another thing >that might help is a fiber supplement. I try to take one a day to help >keep me regular, but I still have flair ups to deal with that just come >for no reason. It's an awful thing to deal with on top of all the pain! >I hope we can both find some answers from knowledgable girls here. >Please feel free to email me or look for me on this board or Resolve's >board. > >Jaime > Hi Jaime & Tara, I was dx with endo last June. I also had some relief with the luprron tx but I have also had 2 ruptured cysts in a span of 6 months and the pelvic and back pain has been coming back. My period has not reyrned since I did my surgery last June 2005. How long did it take for your cycle to start back. How are you guys able to work with all the pain or the inconsistency in the pain. I have been feeling down with all this up and down. I know we have to hang in there but this is so hard sometimes
-- Alice >At Mon, 20 Mar 2006, Tara wrote: >> >>Hi, >> >>My name is Tara and this is the first time that I have posted on this >>board. A wonderful lady on my Resolve board let me know about this site >>and I will be forever grateful. It's nice to find somewhere that might >>have more people with my problems. It's nice not to be alone. >> >>If you read both boards then this is going to be mostly a repeat. Sorry >>about that. >> >>I am 34. I have no children as of yet. I have been married for three >>years in April. During this time we have not tried to avoid getting >>pregnant and we've been actively trying to get pregnant for about 9 >>months now. We haven't had any lasting pregnancies. >> >>About a year ago I had a cystectomy for two endometriomas. While they >>were taking care of those they discovered stage 3 or 4 (depends on which >>doctor you ask) endo. I never knew I had it. I just knew that I was in >>a lot of pain and it was getting increasingly worse. I was to the point >>where I was on tramadol, vicodin and muscle relaxants and it still hurt >>so bad at times that it would make me hyperventilate if I wasn't >>careful. After the surgery it was such a blessing. Hardly any pain at >>all. It lasted for a few months. I think the endo has now come back >>with a vengeance because I am back to being useless for two to three >>days a month due to pain. >> >>This is the TMI part. Since my surgery last April and the one I had >>prior to that in January to take out my gall bladder, I have had some >>gastro issues. For awhile after my gall bladder surgery they were >>pretty severe but they cleared up for the most part. After the >>cystectomy I started bloating pretty badly and had a lot of gas. Still >>do. This AF I developed some new problems which is what has brought me >>here. I need to find out if anyone else has similar symptoms and if >>there has been anything that you have learned of that can help or at >>least seems to for you. These new issues had me freaking out pretty bad >>the other night so I would appreciate any suggestions, opinions, etc. >>that you might be able to offer. >> >>At the tail end of AF this month I developed some nagging lower back >>pain and some lower abdominal or pelvic pain. Accompanying this were >>gastro issues. I had a lot of gas. I'd feel like I had to go but >>couldn't or if I did then there wouldn't be very much or I would go but >>it would be very loose stools (not quite diarhea). Sometimes these >>loose stools would be very acidic and sometimes they weren't. Then I >>would have times where I would have hard stools and they would be >>preceeded by dull, achey cramping and some sharp pain which is mostly on >>my right side. There were a couple of short ones on my left. The sharp >>pain seems to be in my ovary area so I'm wondering if maybe the stool is >>pressing on a cyst or something. I am on day 10 of my cycle and today >>was the first day that I didn't have pain from this that was so bad I'd >>cry and not be able to sit still or concentrate. I have found that when >>the pain is bad, if I lean over something and rock sideways, it seems to >>diffuse the pain somewhat. It's like if I change the direction gravity >>is pulling it helps. Having it pull straight out from my stomach >>instead of straight down like I am standing or sitting seems to help >>ease the pain. The problem is that when the pain is this bad I don't >>have a whole lot of energy to spare and end up getting tired if I stand >>bent over so I end up kneeling with my upper body in a chair and rocking >>sideways that way. Pacing helps a little too. The sharp pain seems to >>be worse in the late afternoon to early evening. I don't know if this >>is because I tend to start my day late or not (typical first meal is >>around 2 or 3 p.m.). >> >>Have any of you had similar symptoms? Have you found anything that seems >>to help? I seem to ovulate a little early so I am currently in the >>window where my body could be working on being pregnant (hope springs >>eternal) so I won't take anything other than Tylenol for the pain. Kind >>of sucks, really. I was wondering if maybe anyone had found any types >>of foods that seem to help or maybe foods that you steer clear of. If >>you have these symptoms, does there appear to be any rhyme or reason to >>them? Do you tend to have them for a certain amount of time and then >>have them clear up? Are they worse at a certain time of day, etc.? >> >>The lady that referred me here said that she had similar symptoms and >>that hers were from endo being wrapped around her intestine. Eventually >>she would have to have part of her intestine taken out. >> >>I know I should probably go to the doctor but we are in the process of >>changing from COBRA insurance to paying for all of it ourselves. I'm >>worried that if I go to the doctor that they will find something wrong >>and then we'll be screwed for insurance after COBRA runs out. I know >>that if we've had insurance for 18 continuous months that they can't >>deny us but they can make it so expensive that we couldn't afford to >>have it. I have fibromyalgia and chronic fatige so it's really >>important that I have insurance. >> >>Thank you for listening to me. Any advice, opinions, etc. that you >>might be able to give will be greatly appreciated. Also, thank you for >>being here. It's very nice to find you. >> >>Take care, >>~Tara |
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