Surgery not doable to fix the problems I've been having with prolapse (ostomy related, not cancer re

Helen321
Helen321 Member Posts: 1,459 Member

Hi all, So I went to two surgeons and both said the same thing, if they take out the uterus, which has now fallen where the rectum would be (pretty much I'm practically sitting on it and it is very painful), I'd then have to get a mesh implant, worry about a fistula and also get artificial support for my other organs.  My bladder is already falling out of place so taking out the uterus would make it go further and that would cause more prolapses and hernias.  The GYN surgeon said one surgery would lead to another would lead to another and eventually I'd most likely have serious health issues and possibly be unable to fully function normally.  I'm 45 so that's a big no. The team recommended that I exercise, do kegal exercises and build up all of my muscle in support of the organs.  The reason I'm not exercising is it's very painful at the surgical site (I also sit all day for a living).  Pretty much my doctor said work through the pain to get to the other side.  He will give me pain meds if I need them.  I really wanted the easier fix, that's the truth.  I didn't want the surgery but I didn't want to hear that pain was the only way to get this going.  I'm so over pain at this point.   In the end, I'm cancer free and I'm unbelievably greatful to just be alive. 

So as the saying goes, suck it buttercup!  Here we go.  I'll be going to a physical therapist to get a routine going to so I don't hurt myself further and me and the gym will be best buds.

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    ugh that sucks Helen.  I'm

    ugh that sucks Helen.  I'm sorry.  Yeah cancer free is awesome, but sorry you have to deal with these issues.  Maybe visit another surgeon too?

  • Helen321
    Helen321 Member Posts: 1,459 Member
    jen2012 said:

    ugh that sucks Helen.  I'm

    ugh that sucks Helen.  I'm sorry.  Yeah cancer free is awesome, but sorry you have to deal with these issues.  Maybe visit another surgeon too?

    Thanks. Cyn just emailed me

    Thanks. Cyn just emailed me the same thing.  There is a little more to it but it's female stuff so I didn't want the guys to feel TMI'd.  I'll post that on the GYN board. I went to two surgeons in Sloan.  It's a good idea so I'll send my scans to another hospital.  I feel like they're guessing.  He said that only 20% of the patients who do a full removal (APR) experience prolapse and everyone has a different prolapse situation so you have to go by what you see on the scan.  The surgeon said if the muscle building doesn't work, then we'd consider surgery but I could be opening Pandora's box. His vote would be to do pain management and skip surgery. If I didn't sit for a living I would be fine. The pain only comes and goes unless I sit too long.

  • NEDbound
    NEDbound Member Posts: 54
    Helen321 said:

    Thanks. Cyn just emailed me

    Thanks. Cyn just emailed me the same thing.  There is a little more to it but it's female stuff so I didn't want the guys to feel TMI'd.  I'll post that on the GYN board. I went to two surgeons in Sloan.  It's a good idea so I'll send my scans to another hospital.  I feel like they're guessing.  He said that only 20% of the patients who do a full removal (APR) experience prolapse and everyone has a different prolapse situation so you have to go by what you see on the scan.  The surgeon said if the muscle building doesn't work, then we'd consider surgery but I could be opening Pandora's box. His vote would be to do pain management and skip surgery. If I didn't sit for a living I would be fine. The pain only comes and goes unless I sit too long.

    non surgical option

    Anyone talk to you about a pessary?

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Helen321 said:

    Thanks. Cyn just emailed me

    Thanks. Cyn just emailed me the same thing.  There is a little more to it but it's female stuff so I didn't want the guys to feel TMI'd.  I'll post that on the GYN board. I went to two surgeons in Sloan.  It's a good idea so I'll send my scans to another hospital.  I feel like they're guessing.  He said that only 20% of the patients who do a full removal (APR) experience prolapse and everyone has a different prolapse situation so you have to go by what you see on the scan.  The surgeon said if the muscle building doesn't work, then we'd consider surgery but I could be opening Pandora's box. His vote would be to do pain management and skip surgery. If I didn't sit for a living I would be fine. The pain only comes and goes unless I sit too long.

    Were both surgeons men?  Not

    Were both surgeons men?  Not to sound or be sexist...but I'd try a female surgeon at another facility before you throw in the towel.  I did read your post on the gyno board...sounds horrible.  Hugs.

  • ron50
    ron50 Member Posts: 1,723 Member
    G'day mate

       I am sorry to hear of all the problems you are having. You know my history so I am not surprised that you are having problems. The serious nature of the cancer surgery , time and gravity have done a job on you. My brother who is now 70 has had a history of ulcerative colitis ahd proctitis since his late twenties. Last year he suffered a prolapse and they virtually had no choice but to build him a complete new fundamental orrifice. He was lucky being a male that he did not have extra plumbing sitting on top of everything to complicate matters. His surgery went 'very well'according to the surgeon BUT he is still not recovered simply because it was so invasive . He is still taking it easy . He wants to do some long trips with his 4x4 and van but so far has not felt up to it. What I am hinting at is perhaps they are right and surgery may be the worst outcome for you. Over the years I have noticed that you are a pretty tough cookie and that you have endured a lot of physical and stress related pain. Fom my expierience I would strongly advise against going on any of the opiates for pain. I am just into my second week of the taper to with drawer from oxycodone . I was on 80mg a day for over 18 months . My neph said I was either suffering hyper algesia or had become immune to the pain killing effect of the oxy. Either way I am looking at 32 weeks to get off them at 5mg a day a fortnight. The withdrawel is not so bad but just changing the dose slightly seems to have put me into a cycle of dihorreah and constipation. The former I can deal with the latter causes me a lot of trouble. If you can get thru with excercise and perhaps a pain management specialist it may be the best way to try. I know how depressing constant pain is on top of all the other crap in life. Sending you a big cyber hug and wishing you luck, Ron.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    jen2012 said:

    Were both surgeons men?  Not

    Were both surgeons men?  Not to sound or be sexist...but I'd try a female surgeon at another facility before you throw in the towel.  I did read your post on the gyno board...sounds horrible.  Hugs.

    Yes, they were both men.

    Yes, they were both men.  It's funny because I went to the physical therapist today and I did get a very different vibe when it's a woman.  You can say well this happens and she'll say . . .oh yes I'm familiar with that.  Also someone else on here mentioned that there was an option of taking an abdominal muscle and putting it in place of the anal muscle, I was not given that option.  I really need to ask.  It was considered a plastic surgery.  The physical therapist said that she has seen both the therapy and the surgery and most people regret the surgery because of scar tissue.  It's not the surgery itself, it's the aftermath.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    ron50 said:

    G'day mate

       I am sorry to hear of all the problems you are having. You know my history so I am not surprised that you are having problems. The serious nature of the cancer surgery , time and gravity have done a job on you. My brother who is now 70 has had a history of ulcerative colitis ahd proctitis since his late twenties. Last year he suffered a prolapse and they virtually had no choice but to build him a complete new fundamental orrifice. He was lucky being a male that he did not have extra plumbing sitting on top of everything to complicate matters. His surgery went 'very well'according to the surgeon BUT he is still not recovered simply because it was so invasive . He is still taking it easy . He wants to do some long trips with his 4x4 and van but so far has not felt up to it. What I am hinting at is perhaps they are right and surgery may be the worst outcome for you. Over the years I have noticed that you are a pretty tough cookie and that you have endured a lot of physical and stress related pain. Fom my expierience I would strongly advise against going on any of the opiates for pain. I am just into my second week of the taper to with drawer from oxycodone . I was on 80mg a day for over 18 months . My neph said I was either suffering hyper algesia or had become immune to the pain killing effect of the oxy. Either way I am looking at 32 weeks to get off them at 5mg a day a fortnight. The withdrawel is not so bad but just changing the dose slightly seems to have put me into a cycle of dihorreah and constipation. The former I can deal with the latter causes me a lot of trouble. If you can get thru with excercise and perhaps a pain management specialist it may be the best way to try. I know how depressing constant pain is on top of all the other crap in life. Sending you a big cyber hug and wishing you luck, Ron.

    Hey Ron, Thanks for the

    Hey Ron, Thanks for the compliment, I have a high tolerance for pain and most days it's just become a part of my day as background "noise".  Someone will say something and I'll say "oh yeah it does hurt, I didn't notice".  Two things working against me, I have an addictive personality so oxycodone use is out.  I realized I was getting addicted after the last surgery.  Luckily I recognized it.  And morphine does nothing for me unless it's in pill form.  Percocet does nothing at all in any form.  And the plumbing is a definite pain in the neck!  That's the biggest problem in all of this, radiation plays a role in that.  Thanks for the hug! I'm just looking for some kind of normal that doesn't involve thinking every time I'm going to sit somewhere and dealing with the consequences if I didn't think hard enough.  Also this stupid job is killer even though we have ergonomic seats.  There has to be a way, I can't imagine this is going to be my life for 30 more years.  I went to the physical therapist today and they want me to try various things and they were right, it seriously hurts!!!!!!!!!  lol  Holy carp (that's for your pictures) Ouch!!! That's all. PS you're still always my hero.  The one good thing about the ostomy, no constipation.  You know you're desperate when your biggest caveat is that you no longer get constipated but poop through a hole in your abs.

  • Easyflip
    Easyflip Member Posts: 588 Member
    Sorry

    to hear Helen. Exercise would be great if it worked, painkillers for life comes with a whole host of issues, exercise on the other hand comes with plenty of lifetime benefits. There are newer workstations you can stand at, will your company do that for you? I also ditto a second surgical opinion. Good luck!

    Easyflip/Richard

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Aw Helen I'm so sorry. You're

    Aw Helen I'm so sorry. You're right. It's great to beat cancer but what does it leave us with? We're never the same afterwards. You're situation sounds particularly nasty, though. I hope you can find someone that will be able to do something for you. Hugs.

    Jan

  • Helen321
    Helen321 Member Posts: 1,459 Member
    JanJan63 said:

    Aw Helen I'm so sorry. You're

    Aw Helen I'm so sorry. You're right. It's great to beat cancer but what does it leave us with? We're never the same afterwards. You're situation sounds particularly nasty, though. I hope you can find someone that will be able to do something for you. Hugs.

    Jan

    Yeah I just didn't picture

    Yeah I just didn't picture this being my life at 45. It's not like something you have experienced before where you can just say well I did this last time. Also you have to find someone who has the same problem to know what to do.  I'm still looking.  She's out there.