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Post by 1234 on Apr 22, 2012 13:46:33 GMT -5
It sounds like you're a little closer to a decision. I understand leaning towards surgery. This doctor does full excision? Does he think that with this surgery he'll be able to get it all?
The good thing too is that June is a ways off, so you have time to think before then--and time to continue trying to get pregnant without another surgery. What will the CT urogram show? endo or somethign else? Sorry, not very medically educated.
How much family is involved in teh discussions? Will your husband talk to the in-laws or will you have to do that too? I've sort of been unable to talk to my mom about the whole thing since I was diagnosed--she hasn't been particularly understanding--so I feel you on that.
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Post by semicolon on Apr 22, 2012 17:07:56 GMT -5
He does excision, the same one who did my other two laps. Since he spent six hours mainly on the bowel and bladder flap mess, I think he wants to look at the left side and uterosacral ligament. The second surgery was right after that one to get the diaphramatic endo and small bowel, no other work in the pelvis. I know the excision has helped since have had no more small bowel issues and the diaphragm is great.
The CT urogram looks at kidney, ureters, and bladder to make sure they look structurally ok and to help him locate the ureter for surgery, I think. I'm not sure if it would show lesions or not, but I'm not sure he's looking for that anyway.
I don't really talk much about the fertility stuff with the fam, but to explain another surgery I feel that I have to. My hub already talked to his sister a bit. I try not to let the family in on all the ups and downs of all of this, but I'm sure they have probably read between the lines by now (the fact that they don't ask about it makes me think they've done their googling the basics of endo and fertility!).
Omak, I had one if those bug outs the other night after reading a blog a woman wrote about her depressing struggle with endo. The thoughts, "what if this gets way worse, what if I can't be the person I want to be, can I even commit to a family?" complete with melt down. Then I sucked it up and put my head back on and resolved to plow ahead for now. Sometimes this whole chronic disease realization totally side swipes me.
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Post by omaklackey on Apr 22, 2012 22:20:19 GMT -5
yeah, the more I learn in class about dealing with Chronic diseases the more I realize we should all be getting counseling!
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Post by semicolon on May 16, 2012 20:56:23 GMT -5
So I haven't updated in a bit. I have a surgery date scheduled for June 21st to hopefully free up "righty" and check out the bladder mainly. I had my CT scan yesterday, and I had increased pain and diarrhea last night. My PT was thinking it might have been the contrast solution, but I only had the IV, not the oral.
I still feel a bit mixed about the surgery. My last period was only terrible for two days, then only moderate pain. But I had some nearly crippling abdominal pain on the way home from visiting family- we stopped at the grocery store to get some things and I kinda had to pee (not crazy like), but after I went I could barely stand up straight and walk around the store. It seems more endo than IC to me, any thoughts? I'm still unsure. I think the PT has helped a bit, and I'm still gluten-free for now (not sure how much that is helping). I can actually register kegals on the biofeedback sensor now!
My doc sent specific orders for the CT scan with delayed visuals to look at the ureters. But the tech had trouble with good pics of the left ureter (most of my probs are left side including my hip pain), so I am anxious to hear what he thinks of the scan. The damn left side won't let me be!
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Post by omaklackey on May 16, 2012 20:59:40 GMT -5
Endo on the bladder causes IC. Its probably both. Isn't that nice... I remember being told I might have IC and thinking "I don't have that, I have endometriosis and that's all that's wrong" boy was I naive. LOL
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Post by semicolon on May 16, 2012 21:21:13 GMT -5
I think it's both too, but I keep trying to sort it out. I have given up most of the IC no-no's minus the occasional alcoholic beverage but alas, it continues! I think my doc is of the mindset to clean any endo out, and what I'm left with is more IC pain.
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Post by Karen on May 16, 2012 21:33:55 GMT -5
Hmm, well, you don't seem like your mind is made up just yet. And that's ok. You have a bit of time to figure out what feels best. Have you ruled out a UTI as the source of your recent bout of pain? I'm not suggesting it couldn't be something else, but perhaps something to cross off the list.
I'm glad PT seems to be helping a bit! Does your PT just work with strengthening the pelvic muscles (high five for a kegal registering on biofeedback!), or does she help to break up adhesions as well? I swear, for me, best. thing. ever.
Let us know what the scan results show!
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Post by semicolon on May 17, 2012 6:28:13 GMT -5
I think I'm more unsure of what the results of the surgery are going to be hence my doubt, but I'm working on being ok with that. I'm not sure if it will help the bladder or not, and I'm not sure if freeing up the ovary will help our fertility or not. But it will give me the chance to move on.
I should have a follow up urine test, but my last one in Nov. was negative for UTI but did show blood in the urine (I've been having the bladder symptoms since the before that). I put it off because I want to see if he wants another blood panel before surgery to hopefully get it all done together.
My PT does work on it all, and some internal work. I like the manual work, I think that has helped. I've tried to do that myself but it's just not the same!
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Post by 1234 on May 17, 2012 8:33:08 GMT -5
I know that crippling pain after peeing, etc, Semi, but don't know what causes it. FOr me it sort of happens right at teh end of peeing, and/or as I'm standing up. It's ridiculous.
Unsureness seems to be what we are left with, with this disease. you never know when or if something will help, or when or if some horrible pain will come pouncing out of nowhere and eat you. The surgery might not solve everything, but it's possible it will solve some things. It does seem that since you do ovulate and have a regular cycle, that freeing the ovaries would give you a stronger chance, but then that's really all it is, which is a hard thing to make a decision on...I guess that's your point.
Sorry i'm not adding much here!
Also, I know many of us have discussed blood in the urine, but I don't remember teh conclusion about causes for it, if there isn't a UTI. But it seems lots of us have it. Maybe it's like the rectal bleeding? that there is just inflammation/irritation externally, and that can cause teh bleeding, even without direct bowel/bladder involvement.
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Post by semicolon on May 17, 2012 20:30:59 GMT -5
Yes, the uncertainty of endo is really overwhelming. I was thinking more about my doubts, and I think it is more the fear that I'm putting my body through another surgery for nothing. It all comes down to fear, but I really have the utmost faith in my surgeon to help (or at the least, not make things worse!). I also still have trouble telling people I'm having another surgery, i am completely over talking about my health!! well, not on here, I guess . Rust, I am amazed at my body's robust ability to be regular, it gives me hope! At least I will be able to say I've done everything I can for my health and fertility. I would love to do a study on blood in urine and ladies with endo! It would be nice to have a link that is scientifically based.
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Post by Karen on May 17, 2012 20:56:35 GMT -5
I'm all for surgery, but after a few of them in a row, I can understand your fear of going through another surgery without getting results or more answers. But, if that's your most logical option, I can see why you'd lean towards it.
Add me to the list of women with blood in the urine! Never got to the bottom of it, though my bladder symptoms mostly resolved after diet changes. I haven't had a urine test since to see if there's any blood in there.
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Post by semicolon on May 27, 2012 14:36:52 GMT -5
On the good news/ bad news train, we ran one of our favorite 5k's today. It was our first race ever in 2004, my comeback run after the colon resection last year, and benefits a great cause. So we did a personal best time (I was hauling a$$ for it) but I had some major bladder leakage issues! This was the worst I've ever had, i usually have a few drops here and there if I'm really pushing it. My husband said, "yeah, you don't need another surgery" (insert sarcasm here). I still rocked it for the record!
The very good news is that my foot & ankle feel good (I was worried I was developing a stress fracture and took a week off). Gotta avoid the dreaded boot!
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Post by Karen on May 27, 2012 14:56:58 GMT -5
A PB is great news!!! (Despite the leakage, of course... Is PT helping w/that?) Way to kick endo's ass by rocking a 5K!
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Post by JC on May 27, 2012 14:57:18 GMT -5
You totally kick ass for running that and beating your record time! Even despite dealing with health problems! You rock!!
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Post by JC on May 27, 2012 15:00:20 GMT -5
I just saw the comments on blood in the urine. My entire family has this problem (even the men). A doctor diagnosed my family with a condition called thin basement membrane nephropathy. It's a benign condition and supposedly harmless. I read somewhere that the only way to diagnose this is through a kidney biopsy and none of us have ever had one. I don't really want one either. LOL. Kidneys are supposed to filter blood and keep the blood cells from entering the urine while removing the waste. For us, there is a membrane that is too thin and sometimes leaks through some blood cells. I'm not sure how common it is but everyone in my family has it. None of us have kidney problems so I've been comfortable with calling the condition harmless.
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