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Post by semicolon on Apr 16, 2012 20:08:50 GMT -5
I had a follow up with my endo surgeon and could use some help (sorry if this gets long). I never really gave too much background in one place on my surgery history, the short story is I had three surgeries last year, starting with a colon resection and removal of left ovary to resolve a colon stricture (first diagnosis of endo, that was a true surprise), followed by two laps with an endo specialist I sought out with excision of endo on bowel, bladder, pelvis, small bowel and diaphragm. Whew! We are trying to get pregnant, so I had an HSG of my remaining tube with my regular obgyn. The tube is clear but the fluid sat all around my ovary with question of adhesions, hence why the little egg might not be making it down the slide. Today, my endo surgeon reviewed things. He believes it is adhesions that could easily be addressed, since the tube is clear and the right ovary was pretty good. He also thinks I have endo remaining causing my bladder issues, and there was so much on my bowel he dealt with that is not surprising. He was ridiculously optimistic about it, he kind of lit up like a Christmas tree! I have been resistant to try IVF although I can't quite put my finger on why- is the cost? the hormones? the uncertainty and really low (to me) rates of success? So I had been considering adoption if we weren't pregnant soon. I think my husband would like one more stab at doing things naturally and this surgery would be it. But to do another surgery right now seems so impractical since I missed about 2.5 months of work last year and my main colleague I share patients with is going on maternity leave this summer (ironically). I am pretty conflicted, and I wouldn't even consider another surgery with anyone else but him since he is amazing. I did have the motto "Surgery Free in 2012" for this year, but I feel like I just want to get on with life and starting a family, so if I want to do this I need to just do it or bury it and move on. I know I'll recover fine, but I'm feeling like, another surgery? Seriously?! Sorry, that was long. Anyone have any thoughts? This threw me for a loop today, I think I'm still reeling.
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Post by loveshoes on Apr 16, 2012 20:28:29 GMT -5
Hi!
Decisions like this are always hard. I was diagnosed with my endo and was told they didn't know if I'd get preganant when we wanted to try, it would just be trial and error. Despite being told I had ovarian failure, my periods returned and were normal ( minus the dire pain ) and we did get pregnant but I miscarried at 6 weeks. It was very hard but it was almost exciting to know I could get pregnant. We tried for almost 1 year after that with no success. By that time, my endo got so bad again, we had to choose my health and not risk anything bad coming from the endo. I saw a pelvic pain specialist and talked to him about clomid and things of that sort. His main caution to me was that they actually use clomid to GROW endo prior to surgery so they can excise it better. That really scared me. Seems like alot of the drugs can cause alot of issues, none of which are good for endo. I was scared of the IVF stuff, it's very expensive and there are no guarantees not to mention the toll it takes on the body. Do you know who Guilliana & Bill Rancic are? They have a show on tv, anyways, she did IVF afew times and at 35 years old got diagnosed with breast cancer, they think it might have been from all the egg stimulating drugs though there is no 100% proof.
I can totally see why you are torn and wish you clarity and focus as you and your husband make these decisions.
Have you tried giving up wheat/gluten - apparently that can have a huge factor in trying to get pregnant. I wish I would have known more about what the endo diet can do, maybe I just wasn't ready for such a drastic diet change but that might help you out to get pregnant natually if you want to keep trying.
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Post by Karen on Apr 16, 2012 20:36:55 GMT -5
Aw, I'm sorry you didn't get better news. I can see why you'd be really reluctant to go for another surgery, take more time off work, and heal from yet another surgery. That's a lot of surgeries! And I get why you would want to steer away from IVF. It can be hard on the body, it's costly, and there are no guarantees. That being said, some women think it's the best choice for them. Since you're on the fence, perhaps it's not the best thing to commit to right now. So, remind me... have you tried PPT yet? I know you were open to it, but I don't recall if you made the plunge yet... I mention it because a good PT can really do wonders on adhesions without surgery, which as we all know, can cause more adhesions. It's a never-ending cycle. If you really wanted to, you could schedule a lap for a few months from now after your coworker is back from maternity leave and try PPT in the meantime... Yes, I'm on my PPT soap box again, and perhaps today isn't the day to consider it because you have a lot more on your mind, BUT, I had to mention it because it could be another option to look into when you're done processing the immediate news. Sending you a big hug because it sounds like you have a lot on your mind and a lot to consider!
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Post by semicolon on Apr 16, 2012 21:09:39 GMT -5
Loveshoes- I have been gluten free for two months, but I haven't noticed much difference unfortunately. I was hoping it would help my periods but this last one was still painful and clotty. I have been temping and I am very regular with ovulation & cycle but with that much endo I can't imagine it's a good idea to overload my system with hormones! I havent seen that show, are you in the UK?
Karen- I had a PT eval last week and will see her again on Weds. She did feel that I was tighter on the left and that hip was rotated. And apparently I can't even do a kegel! I have to work on that, I'm afraid some day my pelvic floor may give out like the bottom of a Flintstone car! My gut says it may not help the right side much because she didn't feel too much in the muscle fascia on that side but I'll tell her to work on it.
Part of me really wants to be moving forward, so waiting again would make me feel so frustrated! I can't escape my gut feeling that surgery isn't a terrible idea, which then makes me smack myself in the forehead!
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Post by JC on Apr 17, 2012 7:11:25 GMT -5
I really want to spend some time in replying to this. I will come back and reply after my exams today but I at least wanted to send some love to you and let you know I'm thinking about you. I know this is a really hard decision and you're doing the right thing by taking some time to really think it through.
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Post by loveshoes on Apr 17, 2012 8:12:15 GMT -5
Loveshoes- I have been gluten free for two months, but I haven't noticed much difference unfortunately. I was hoping it would help my periods but this last one was still painful and clotty. I have been temping and I am very regular with ovulation & cycle but with that much endo I can't imagine it's a good idea to overload my system with hormones! I havent seen that show, are you in the UK? Nope, I'm in the USA. Check on your TV guide, it's on E network I think. Bill won the celebrity apprentice the 1st season and is a very successful business man. Guilliana is a TV host. I'm sorry the past 2 periods haven't improved, many say the diet makes a difference. Hang in there.
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Post by 1234 on Apr 17, 2012 9:25:30 GMT -5
Hi, Semi. I'm struggling a little bit to respond because I felt every word you were saying.
On the IVF--I understand the reluctance. It invades your privacy, it's expensive, there are the hormones... the great thing is that you DO ovulate, so the potential to get pregnant is there. I don't know if it's good to say this or not, but one potential difficulty of ovulating but having a tube that is pulled out of position or blocked somehow is a greater likelihood of an ectopic pregnancy--a threat that IVF would bypass. I'm saying this with a lot of reluctance because I feel I'm being paranoid, since I've had an ectopic pregnancy, so please take this with a grain of salt. All of that being said, I wouldn't do IVF either; it's really unpalatable to me.
On the surgery or not, I also don't know what to say. I feel like your decision making process is sound and thoughtful, and not being able to make a decision right now is part of the process. You just have to sit under all of this doubt and internal debating and googling and discussing with your husband, and I think a clear decision will emerge. Have you made a list yet of pros and cons of all the options? that might help you articulate more clearly the different things you're weighing in your head. Seeing them on paper makes you see them better, sometimes.
Thinking about you today. I hope the charcoal grilling on your pelvis is better.
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Post by omaklackey on Apr 17, 2012 11:38:09 GMT -5
You know I have had similar fights with myself as far as adding more surgery to my year in Nursing School. I just really feel every time that the surgery just made it worse. BUT there is also a time when there is no longer a choice and you have to have surgery. I have been weighing whether I have really gotten to that point or not. Is it to where I have no choice and I have to get whatever is wrong fixed, or does the pain, possible outcome and frustration of fatigue after a surgery negate the whole thing.? I was having a real whiny moment about a week ago and thinking, "is this my life, having surgery once a year or every two years? Is this really what I have to do for the rest of my life?" I just have to remind myself and realize that it really is about the pro's and con's and you are the only one who can decide if its worth it to have another surgery. I get so many "yeahs and nayes" when I bring it up it, that it can cause even more confusion. So ask yourself, what is the benefit of this surgery and how badly do you want that benefit? And you know, no matter which one you choose everyone here will be pulling for you and backing you up because we all go through the same question and frustration.
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Post by semicolon on Apr 17, 2012 20:23:10 GMT -5
Thanks guys, I appreciate all the input. As I always say, you have to go with your gut but my gut and my head are at odds. Gut says surgery, head says "what the hell are you thinking, girl?" I have had very good surgery experiences, especially my two laps with this doc so that is definitely in the pro column. But this surgery feels more elective compared to avoiding bowel obstruction or collapsing lung (unless my pain continues to spiral) so its a harder sell. It's tough because we want a family, but no method is a guarantee even adoption. Your support really means a lot, ladies, thanks. Rm- The coals are still simmering but not quite at BBQ level any more, looking forward to my PT appt tomorrow to see if she can do anything for me.
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Post by Karen on Apr 17, 2012 20:56:25 GMT -5
It's hard to make big decisions like that! It's a lot to think about, but rest assured, no matter what you decide, we got your back, k? Yay for the PT! I hope all goes well tomorrow and the coals are extinguished! I tell you, I'm amazed at what they can do and how much more 'space' you feel like you have once they're done in there!
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Post by 1234 on Apr 17, 2012 21:19:11 GMT -5
As personal and painful and invasive as this disease is, nothing is more so than the questions, decisions, and heartbreak around fertility. It just involves so many parts of us, and is so deeply wired into who we are. And when you want to have kids, and can't, i feel like all the concerns about guilt and self-blame around this disease become stronger. LIke "this is an elective surgery"--yes, but don't discount your desire to have a family. I fall into this trap too, but I really do feel that the physical needs and emotional desires aren't, in some cases, so far apart. I think I'm rambling by now, Semi, but all I want to say is don't discount something because you feel it's not life-threatening. Your emotional health and your desire to have children are important too. If you feel clear on what might lead you to that, that might help make a decision? Keep muddling it out here; we'll at least bounce something back. And I'm glad the BBQ is better! Props to you for getting through that run, and not pulling an Uta Pippig!
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Post by semicolon on Apr 18, 2012 19:50:44 GMT -5
RM, thanks for your reply. It made me all teary, and I hate crying in public message boards! This disease is truly an emotional roller coaster, and things I never thought would get to me keep popping up. I will keep muddling away, it's a great place to do that.
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Post by 1234 on Apr 18, 2012 20:26:00 GMT -5
Crying in public message boards has its own place, I suppose. I have also been amazed at what an emotional roller coaster this disease is--it has allowed me to develop a patience with myself and gratefulness for my life I wouldn't have otherwise, but it is so hard. And with so many different types of pain, such a struggle.
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Post by 1234 on Apr 21, 2012 9:44:32 GMT -5
Just checking in, Semi--how are you doing?
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Post by semicolon on Apr 22, 2012 8:43:43 GMT -5
I had emailed my endo surg with a few questions, he wants me to have a CT urogram to check my kidneys and ureters (mainly the left) since I had so much endo up to the diaphragm. I had asked him about IC vs endo and he feels it is probably endo because of how much was there before. I think I am leaning toward surgery since there is a chance to address the ovary and the bladder. We had a great day yesterday with some of our very good friends, and got to meet the newest member who is just 3 weeks old! It's hard not to want to give our fertility one more shot after that. I had seen my PCP to look at my knee (then an ortho who drained it...what a week!) and his words were to go for it. I am a little afraid it's going to turn from a small surgery to something larger, but if there is endo there I'd like to try to get rid of it.
I think I need to wait to do the CT scan until my next cycle to make sure I don't miraculously get pregnant before having it, then look at surgery towards June. I have to talk with my family to make them understand, that's going to be awkward :/
The bad news is that I am sidelined from running for at least a week per orders of the ortho, and I've been wrapping the knee to keep down the swelling but I think it's going to pop back up. The good news is that my abdomen felt great yesterday, and I drank wine (and lots of water) all day with no bladder pain. Sometimes I don't get this disease at all!
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