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Post by Karen on Jun 14, 2012 21:33:27 GMT -5
I'm sorry you're not feeling better yet. I had a reaction to the iodine and band-aides, too - even the monitors they stick on you during surgery! I had some nice, perfect square and rectangle rashes all over my body after my lap. I hope the bladder infection clears up soon - those can get pretty nasty! I'm hopeful your nausea goes away after it clears up. You can always get e-readers online and order books online - no wait needed! If you haven't read The Girl With the Dragon Tattoo series yet, I'd highly recommend it! It's a bit dark, though.
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Post by 1234 on Jun 15, 2012 10:09:42 GMT -5
Glad you went to the doctor and got some meds to handle the infection and rash, but I'm sorry about the steroids. I'm just on my last day of prednisone and will be SO GLAD to get off of it. Tough drug to handle, particularly in high doses.
What sort of books do you like? My husband and I are reading a really interesting history type book--American Nations--that basically boils down american history to the interactions of 12 identity groups. It's fascinating!
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Post by faithh on Jun 22, 2012 20:54:33 GMT -5
Hey! I've been reading the pretty little liars series - its a little juvenile but its actually kinda good - especially after the 3rd book. :-)
I'm glad your getting better! Even though your having a hard time with it at least you now have answers!
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Post by chibineko717 on Jul 9, 2012 19:11:11 GMT -5
Thanks everyone for the reading suggestions. They are now on my summer reading list. faithh, I have been watching the TV series of PLL, so I'll try to track down the books.
The allergic reaction went away but I am having a lot of pain since I've had my period for about 2 weeks. My period came a few days after my last post op, but it came back about a week after it stopped and hasn't stopped.
I'm also up all night because I think the surgery aggravated the IC. Dr. M did not mention it at my last post op and she did not mention any treatments for the endo. At my pre op she said that we would probably have to do PPT, so I hope I can get that set up when I see her next week.
I've tried to switch up my diet, but my mom does not really believe in going gluten free. I can't really walk to the store yet to get some things that would make it easier to go gluten free.
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Post by semicolon on Jul 9, 2012 19:51:55 GMT -5
The first 1-2 periods after a lap can be rather horrendous, maybe she will have some insight at your next appt. have you looked at the diet for IC? I think it is easier than gluten free, might be easier to start with that. PPT is pretty cool, it would be great for you to try to see if it helps.
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Post by chibineko717 on Oct 28, 2012 17:53:22 GMT -5
I went to see Dr. M last week since my appoint was bumped up. Since I haven't stopped vomiting, she gave me some protmethazine for the nasuea. She thinks it might be that my nerves keep sending pain signals even though the endo is gone. She is trying to put me on Cymbalta to see if that will help with the pain. I'm just waiting for the insurance to approve it.
I am also scheduled for a CT on Tuesday to see if I have a bowel obstruction since my pain is getting worse.
This nausea and vomiting is really getting to me since I can't digest any veggies or fruit.
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Post by chibineko717 on Nov 2, 2012 19:12:39 GMT -5
I had the CT and Dr. M's nurse called today and said that my intestines are pulled out of place. My nausea and vomiting is because I have a UTI. I do not have an obstruction!
She said that there is a surgery to try to fix the issue, but it would most likely do more damage. They want me to gain weight so that my intestines have some "cushion" and are not pulled out of place further.
I've been at the same weight since I was put on Lupron years ago (it made me gain 10 lbs.), but I have not been able to gain more since then. I have no idea how I'm going to do this.
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Post by Karen on Nov 2, 2012 21:26:28 GMT -5
I'm glad there's no obstruction!! I really wish your insurance would cover PT, it can totally help put organs in place! I hope the uti treatment at least gives you some relief. Keep us posted?
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Post by JC on Nov 2, 2012 23:52:22 GMT -5
I'm glad to hear you don't have an obstruction! Hopefully treating the UTI will bring you lots of relief! How much weight does she want you to gain?
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Post by 1234 on Nov 3, 2012 9:18:01 GMT -5
I hope the antibiotic helps you. That is some UTI! What reason did Dr. Mos give for the organs being out of place, other than weight?
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Post by chibineko717 on Nov 3, 2012 13:32:19 GMT -5
Karen, I went to a few sessions of PT, but the therapist said that she can't break up my adhesions and scar tissue since it is too deep. She only knows of one therapist in the area that has the training to do that, but I would not be able to afford it.
Jenaya, she wants me to gain a "few" pounds, so I have no idea how much she really wants me to gain. I think a few pounds for me would probably be about 10. I'm currently at 110 and am 5'.
Rustmyrtle, she said that adhesions are causing my intestines to move around. They are being pulled towards my pelvic sidewall, so my lack of fat there is making it easier for my sidewalls stick to something.
The problem is that I haven't gained weight for a while, and when I gain weight it is always in my butt or legs and never my abdomen.
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Post by 1234 on Nov 3, 2012 15:06:00 GMT -5
I know that Dr. Mos is an expert, but that seems really odd to me. And telling someone who is 5' even and 110 pounds to gain weight seems odd--that is a normal healthy weight at 5 feet. What are your thoughts about what to try? Has the nausea gotten any better?
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Post by chibineko717 on Nov 5, 2012 14:23:39 GMT -5
The nausea is slowly getting better, but I still cannot keep any fresh veggies down.
I'm also apprehensive about gaining weight since I am at a normal weight. I think part of their perception of me is that I'm so small, but all of my weight is on my bottom half and am really skinny up top. Everyone in the office always thinks I'm 16, so I think that they may think I need to gain weight since I am small. But being short does not mean that I am underweight.
It also seems that for me to have enough fat to create a barrier between my sidewalls and my organs would require me to gain a lot of weight. My dad's side has a history of diabetes and everyone is obese, so I don't really want to go down that road.
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Post by deborah1 on Jan 28, 2013 22:10:42 GMT -5
I saw Dr. Mosbrucker for my pre-op today. She explained that they would do a presacral neurectomy, remove my appendix, gallbladder, adheasions, scar tissue, and endo. She also said that she will shoot some Botox into my muscles to stop them from spasming. Has anyone had Botox before to treat endo pain? I've never heard of using Botox for endo. She will also look for endo on my diaphragm and reconstruct it with Dr. Pai if needed. There is also the possibility of a bowel resection. I'm so glad I'm deeing Dr. M for this since it seems like she is the only on with a clear understanding of endo in the area. I'm excited right now because the pain is so bad it is getting harder to breathe or keep food down. Dr. M also moved me to be the first patient of the day for surgery. Although it is really early, 5:15 am, I'm glad I don't have to wait for the robot. My last surgery was about 5 hours late and I was so dehydrated that my IV vein collasped during my surgery. I'm sick too! My tonsils are swollen right now that it is hard to swallow. I got some antibiotics from my PCP and am hoping that this clears up before next Friday. Hi chibineko717! I am scheduled for radical excision of endo and also a presacral neurectomy. I am wondering how the neurectomy worked for you. Any side effects? I've read about bowel and urinary trouble and it sound s as if you've had the latter right after surgery. How are things now?
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Post by chibineko717 on Jan 29, 2013 14:58:21 GMT -5
The neurectomy was okay. I had pain on my uterus since my ovaries had been stuck to it in the past. But most of my pain did not come from my uterus since the endo was mostly everywhere else.
The side effects I'm having now are hard to tell what they came from. I am peeing a lot. I have to get up about 3 times a night to go. I don't know if it is from the neurectomy or the IC. I am lately having a lot of bloating and digestion issues, but that might be from my bowel resection. I still have some cul de sack pain, so the neurectomy did not help with that.
I am starting to get some endo or adhesion pain back, but it is mostly on my right side where the endo was really bad. I've only had my period three times since the surgery, but I did not have uterine cramps, but the pain came mostly from my ovaries. I did not bleed as much as I normally did before the surgery. So it seems that the neurectomy just cuts off the pain to the uterus not not to other areas.
I do not know how it would effect pain during sex since I'm still a virgin. It also seems I have lost a little bit of flexibility in my lower back and hips, but I was a dancer so I used to be really flexible. I can't go into a full split anymore but that might be because I still might have some Botox in some muscles.
It is really hard to pinpoint where endo pain coming from, but I think that the neurectomy helped just a little bit. I thought it would help more, but I know now that the endo was on other organs and that the endo on my uterus was not as bad. I think if had had my period more often, it probably would help with the bleeding and clotting, so I'm glad I did it.
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