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Post by omaklackey on Jun 10, 2012 21:04:59 GMT -5
We are cutting into my few vacation days to go to it. I hate it, but I don't have a choice. I can't do anymore surgery right now but I'm going to need something to get me through until I can. At the very least I need a sympathetic ear to talk to. UGH! I was so sure if I went to a specialist like her that it would be worth the time and expense and I would get a nice long bit of relief. It really didn't get me much more then my surgeon in Wenatchee. Its so frustrating!
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Post by omaklackey on Jun 20, 2012 22:25:02 GMT -5
Had a long conversation with my hubby about this appointment we are going to. He keeps asking what I hope to accomplish and I said that I thought she might suggest another surgery but I didn't know. We had a long discussion and he actually talked about how hard the surgeries are on him, and the kids. He never talks about things but tends to bottle it all up. The conclusion we finally came to is; what good are the surgeries? Even going through all the expense of Dr. Mosbrucker what good did it do me. Five months after the surgery I ended up in the hospital for five days. His comment was that he would agree to more surgery if he could see that it helped at all but that it didn't seem like it ever does and its not fair to him to make the kids, him and me go through this over and over again if it never does any good. I just don't know what to say to that because it really doesn't seem like it helped as badly as I wanted it to. The fatigue that these surgeries causes takes months to recover from and by the time the fatigue is starting to go away I'm back to where I was before the surgery because of the pain. I just don't know what to say about all this. I think that this is just what I have to live with for the rest of my life and we have to make the best of it, and I can choose surgeries once or twice a year in a blind optimistic wish that one of them will help, or I give up. I think my optimistic side always wins and I try again, and again. He was really open about the fear that he has, about me not waking up from the anesthesia one of those times, or loosing something I can't get back (body wise). He has just never been that open so even though those conversations are always rotten, I think it was necessary. But now what do I do? Do I just ask for better pain management, some kind of pill solution or what? I just don't know.
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Post by hellsbells on Jun 21, 2012 6:35:35 GMT -5
Ah Karla I really feel for you. I don't really know what to tell you. if I were you. I'd go to the appointment but with the idea that I wouldn't just agree to another surgery. See what she has to say. Good luck hon, whatever you decide to do x
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Post by Karen on Jun 21, 2012 6:39:31 GMT -5
Whatever you decide - surgery or no surgery - I have a feeling she'll do whatever you want and steer you in the right direction. It also may be worth considering getting her take on some of the more alternative ways to treat this disease - really clean diet, PPT, acupuncture, etc. to get her take on what some of the most effective ways to treat it are and what she feels you may respond best to. It may be worth taking the money that may be spent on surgery and putting it towards something else. I totally get you not wanting to go through surgery again for the exact same outcome.
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Post by loveshoes on Jun 21, 2012 12:38:15 GMT -5
I feel very badly for you reading this Karla. I can understand your concerns as well as your hubbys. I have seen so many girls go for the surgeries with poor outcomes and worse issues caused from the surgeries it seems. I don’t want to make a blanket statement like that because not all surgeries are bad, I’m just saying seems like we’ve seen this lately with so many members. What angers me is that you did take all the steps to make this better and it didn’t work and now you’ve had so many other things going in this past year with the IC now and the bowel issues. I just want to cry out for you, I really really do. Sending you a hug, I just don’t know what else to say. Hang in there!
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Post by omaklackey on Jun 21, 2012 16:03:56 GMT -5
She does recommend PPT, but no one does it around here. Nearest she could get me in for PPT was in Wenatchee but that is two hours away. I do have a gas saver now (little small car) but I don't know if that would do it since we also have to pay for it. I'm already on a really restricted diet because of my IC but maybe there is more I could do. I have been doing Yoga lately and I love it, and trying to increase my physical exercise walking 3 days a week which makes me feel better. The biggest issue that I think I need to ask about is an Antidepressant or mood stabilizer. I keep snapping and I know I'm under stress but I'm worried about the toll it is taking on my family. My hubby doesn't really like meds and last time I was on an antidepressant it had horrible sexual side affects which meant we were both depressed! Not being able to have an orgasm during sex causes a whole ugly set of problems for both of us. Thank all of you for responding though. I sometimes feel so lost with all of this and its awfully nice having people who understand. I know we can't always fix each others problems but just having someone listen is great!
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Post by semicolon on Jun 23, 2012 8:49:05 GMT -5
Karla, I worry about you so much, I wish you could go back in time and redo that first surgery. I think you take all of this to Dr. Mos and lay it all out on the table, then see what she says. Even if she says surgery is the only way to go, it is ultimately your decision and worth the consult.
On the antidepressants, maybe you could give it a few months but not look at it as long-term. BC had a huge effect on my sex drive. I feel like sex gets down played, but intimacy is huge and deserves to be a consideration in any treatment. Good luck sorting this out, we're all here for you!
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Post by omaklackey on Jun 26, 2012 23:05:01 GMT -5
well, had my appointment with Dr. Mos and Dr. Pei. They have ordered some tests first. A CT scan to see if there is any diverticulea or something IBD like and then a sitz marker xray to test if my bowels are working properly. If my bowels aren't working somewhere and the markers come to a screeching halt somewhere along the track then that means a bowel resection is needed. The other big surprise is she wants me to take Estrogen. She says I'm way to young to be menopausal and people who say that its okay have never had to do it themselves. I really don't know what to think about that!! It scares me, but maybe it will help the mood swings? I just don't know? She is also going to try and solve my pharmacy problem and has sent my stuff into a mail order pharmacy in Olympia that they have used before. She sent me home with a ton of stuff to do my bladder instillation's! YEAH! So anyways... lots to think about and get scheduled. I can do the testing here in Omak for some of it which is good. I worry about the hormones without follow up testing too... its so scary!
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Post by Karen on Jun 27, 2012 6:02:38 GMT -5
With hormone supplementation, the rule is start low and add slowly. Is she recommending bio-identical? Will she give you some progesterone to balance it out? I'm glad she was helpful, has a few things to look into, and stocked you up! Keep us posted on the test results?
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Post by hellsbells on Jun 27, 2012 6:16:01 GMT -5
Oh it's nice to hear you sounding a little more positive. Enjoy the rest of your vaca!
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Post by JC on Jun 27, 2012 8:33:55 GMT -5
I think she's a good doctor and can be trusted. I totally understand that it's scary though because messing with hormones is never fun. However, she might be right and that your body needs some supplementation. It's worth a try!
Also, do you think you can find a D.O. in your area since you can't see a PPT? DO's can do the same stuff.
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Post by JC on Jun 27, 2012 8:41:59 GMT -5
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Post by semicolon on Jun 27, 2012 9:05:21 GMT -5
Glad you had the appt and are feeling upbeat (and finally, a way to get your bladder supplies regularly, that's like a miracle!!). I would be equally nervous about hormones, but that seems like a more appropriate avenue than the antidepressants, treating the right cause perhaps. I am not familiar with the sitz marker x-ray, I'll have to look that one up. I hope it's not a miserable test :/
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Post by 1234 on Jun 27, 2012 11:24:47 GMT -5
Karla, that's an interesting addition from your appointment. At least it wasn't an absolutely more surgery is needed, but a sensible way to look at what is going wrong with you. I hope you have a wonderful vacation. You certainly need it!
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Post by omaklackey on Jun 27, 2012 13:36:50 GMT -5
Those DO's are both great doctors in the area and I have worked with Dr. Errico at the hospital but they are both in the clinic that doesn't take my insurance. I forgot to talk about this though... She suggested I get a "Crystal wand" and go to the PPT in wenatchee that she knows works specifically with woman who have pelvic pain issues, with the wand and ask her to show me how to do the PPT myself! I ordered the wand up already. I laughed and told my hubby "its my first sex toy". She won't do any operations on the rectocele/cystocele until we can get my levator muscle to calm down. I have been trying to get it to relax but its still twitching pretty bad she said. She also said even if she pulled up the bladder and the rectum, but that muscle is still tight and pulling everything out of shape, it won't really help much. They haven't gotten worse though which is very good so maybe my attempts at strengthening/stretching/Kegeling have at least helped to keep it where its at. I would be a lot happier if I could get them where they belong with PPT instead of surgery. So I'm going to try! Lots of phone calls today setting up CT scans etc.
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