How long before the burning subsided?

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guyfly
guyfly Member Posts: 32 Member

I'm just getting a little frustrated, I know I'm only 5 weeks post treatment but the progress seems to kinda stall and some days regress in regards to the pain in my ****. Am I expecting too much too fast?  I mean I am doing pretty darn good getting my independence back some and a little strength back but can't figure out what's going on down there.  Some days the burning is almost unnoticiable then the next it's back and I'm back to the sitz baths. 

How long before you noticed real improvement, or rather stopped noticing which I guess is real improvement?

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  • mp327
    mp327 Member Posts: 4,440 Member
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    guyfly

    During my recovery right after treatment, I sometimes felt like I was taking one step forward and two steps back.  It can be a slow process with some setbacks.  But don't get discouraged.  It just takes time!  Hang in there!

  • guyfly
    guyfly Member Posts: 32 Member
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    mp327 said:

    guyfly

    During my recovery right after treatment, I sometimes felt like I was taking one step forward and two steps back.  It can be a slow process with some setbacks.  But don't get discouraged.  It just takes time!  Hang in there!

    Thanks for that

    Yea it is discouraging going from seeing daily progress to this but I'll take this anyday over the horrible first 2-3 weeks.  It's all a bit of a blur through treatment till now, guess reality is finally setting in a bit.  

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
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    I finished treatment the end

    I finished treatment the end of May.  The 2-3 weeks after treatment seemed the worse.  I burned so bad.  But, have faith it will improve, but slowly.  I was told to expect small improvements weekly, not really daily.  I know it's frustrating and you feel like you're never going to feel good again, but you will.  My butt still feels a little strange but not the horrible pains it had before.  Hange in there.  Do whatever you can to make it feel better with creams or just going naked down there whenever you can.  It's a real "pain in the butt".  I just had my first cat scan since finishing treatment....will get results on Friday.  Fingers crossed they don't see anything.

  • guyfly
    guyfly Member Posts: 32 Member
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    I finished treatment the end

    I finished treatment the end of May.  The 2-3 weeks after treatment seemed the worse.  I burned so bad.  But, have faith it will improve, but slowly.  I was told to expect small improvements weekly, not really daily.  I know it's frustrating and you feel like you're never going to feel good again, but you will.  My butt still feels a little strange but not the horrible pains it had before.  Hange in there.  Do whatever you can to make it feel better with creams or just going naked down there whenever you can.  It's a real "pain in the butt".  I just had my first cat scan since finishing treatment....will get results on Friday.  Fingers crossed they don't see anything.

    Fingers Crossed

    Thanks, good to hear from someone so recently treated and it is so much better in what 4 months?  At this point I just don't know what to expect.  I hope you have great results from the scan.  I get my first in December...so hard to wait.  Did you already have an exam at the CR surgeon post treatment?  I have that next month and still being in so much pain I'm a bit worried about it. 

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
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    guyfly said:

    Fingers Crossed

    Thanks, good to hear from someone so recently treated and it is so much better in what 4 months?  At this point I just don't know what to expect.  I hope you have great results from the scan.  I get my first in December...so hard to wait.  Did you already have an exam at the CR surgeon post treatment?  I have that next month and still being in so much pain I'm a bit worried about it. 

    I would say I felt much

    I would say I felt much better after about a month.  The first week or 2 after the last radiation treatment was the worst for me.  Got burned pretty bad.  It seemed to take forever to heal but once it started, I slowly felt better.  I know it's frustrating and you want it to feel better quicker.  Be patient....it will.  Yes, I had the first exam 8 weeks after last radiation treatment.  I was so nervous about having pain but it turned out to be fine.  No sign of tumor.  He did a finger check and also some kind of scope check.  Not so bad, just a little weird.  I took a oxycodin pill before checkup just in case, but found I really didn't need it.  My skin was peeling from my butt and vagina area....not fun.  But....it will improve.  I was told to expect small improvements weekly, not daily and they were right.  I feel your pain and hope it subsides quickly.  Do you have any pain meds?  I had oxycontin but only took one a day early evening so I could at least look foward to being comfortable for at least 4-5 hours a night.

  • guyfly
    guyfly Member Posts: 32 Member
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    Update after another month

    Well, whata ya know...after another month or so the burning is pretty much gone except when I go. Lots of unpredicable bowel stuff now ugh...taking lomotil helps some.  The burning is gone though so that's a good thing.  I keep putting off going to get the post treatment scope.  Last Radiologist visit he did a manual check (OUCH) but said he didn't feel anything.  YEAH!  

  • annie4145
    annie4145 Member Posts: 218 Member
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    guyfly said:

    Update after another month

    Well, whata ya know...after another month or so the burning is pretty much gone except when I go. Lots of unpredicable bowel stuff now ugh...taking lomotil helps some.  The burning is gone though so that's a good thing.  I keep putting off going to get the post treatment scope.  Last Radiologist visit he did a manual check (OUCH) but said he didn't feel anything.  YEAH!  

    Glad to hear that you are

    Glad to hear that you are feeling better! It will keep getting better over time. 

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
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    Good to hear

    Good to hear you are feeling better.  It really does get better with time.  Sometimes it feels like you are going backwards though.  Don't put off getting check ups.  I put my first one off just a week or two to give myself more time to heal.  Made sure to take a pain pill before check up just to make sure.  It really wasn't as bad as I expected.  It's been 5 months since the end of my treatment and I'm feeling pretty good.  Finally able to go out and enjoy myself (although I plan things after late mornings and try not to eat much while I'm out....if eating out, I usually bring half of it home to finish....just in case).  Last cat scan didn't show anything....next check ups in January.  So excited that I have 2 full months without any doctor appointments!  I can enjoy the holidays!  Hope you keep healing and continue to feel better!

  • WeSayWarEagle
    WeSayWarEagle Member Posts: 1
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    My post chemoradiation experience - discomfort timeline

    I "turned the corner" on the extreme discomfort about 6-7 weeks after my last radiation treatment. I kept myself lubed up with Aquaphor to aid in healng.  The sitz baths really offered no relief because I felt like I needed to have my bum more deeply immersed and the little sitz bath was very inadequate in water capcity and comfort. A few times I did sit in my deep bathtub with the epsom salts and warm water at a depth that didnt completely cover my legs, but close. That was much better.  I chose not to take the pain pills because I feared the side affects of hydrocodone. The thought of being constipated when I already felt like I was pooping glass rocks and peeing razor blades was more than I could handle. The lidocaine topical was useless. I invested in 2 different donut type cushions, one was a little to soft and the other firmer one with a more ergonomic design was much better.  I traveled a fair bit duing later in this time frame for some sporting events and was instructed to tell the security folks that my donut cushion was a "Medically Necessary Device". This worked in football venues and the airlines. Keeping my bum super coated with the Aquaphor also meant I had to wear Disposable undergarments, which the Descreet brand by a well known company worked best.  This way I didnt have to worry about ruining my undies with grease stains or have greasy spots show up on my clothing (which did happen once) I think the obsessive lubing of my treated area made a huge difference in my healing.  I never saw what the rad burns looked like, but my husband said it was really bad and he could see layers of skin exposed. The burn healing was the worst part of my entire recovery. I'm now 3 months out from my last chemoradiation and just had my first follow up PET scan. I had the first DRE about 8 weeks after last treatment.  It wasn't bad. The scope was no problem.  Don't put off for fear of discomfort. It's much easier than you might think.