Next stop Mayo Clinic?

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Re: Next stop Mayo Clinic?

Postby msimon » 10 Apr 2015, 02:39

:rainbow: :energetic: :superrabbit: Congratulations! And thank you for coming back indeed to share your success with us. I have been following your posts and have wondered how you were doing. What do you think was finally the key to your pain relief?

I, too, suffer from pelvic floor dysfunction and was almost cured of it before my fissure came along. This ordeal for the last 15 months has made things incredibly worse. SO nice to hear of someone who beat this.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Next stop Mayo Clinic?

Postby SSK » 10 Apr 2015, 04:50

I believe there is no one thing that might have lessened my pain. I did have two LIS surgeries so I can't discount that the fissure was primarily healed by those. But, the healing was painfully slow. Since the Mayo doctors also suggested I do pelvic floor therapy, I do feel that my physiotherapist also played a huge role in crossing me over the last hump of residual pain left after the surgeries. She did very basic stretching exercises to strengthen the pelvic floor, as I could not tolerate anything internal. I did that for 2-3 months and then continued doing 30min exercises at home. At the time I had also lost my job, and let me tell you that it was a blessing in disguise. I was no longer agonizing about having to go to work while in pain and though didnt expect it to be so, it turned out to be a huge relief. I focused all my energy on getting better from the inside out. Eventually I did find another job also. Somethings do happen for the best. My advice would be to
1. Keep trying to find a doctor who will get to the root of your problem. I know it's hard to keep going when you think nothing is helping but I promise, once you find out what is causing this, you will be relieved and charged to work on it. I have to say that I couldn't have done this without my husband and family. He was my rock through thick and thin.
2. Remove stress ASAP. Meditate, yoga, quit your job (I know not everyone can do that), whatever works for you. You owe it to yourself to heal your body first and foremost. There is nothing money can buy if you are not healthy and happy.
3. This pain has the capability to cause long term mental trauma. I say it from experience of seeing a renowned psychologist. Please please please get help of you need it. I didn't do it until very late in my condition and I pay the price until today.
4. Treat your body well. Lifestyle changes need to be made to treat this in the long term. I am not only talking about food, but in general. The choices you make go a long way in healing you.

Finally, I don't frequent these pages often, but will come back once in a while to check and hope to help in any way I can :).
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Re: Next stop Mayo Clinic?

Postby msimon » 10 Apr 2015, 13:21

SSK, I know you don't want to be on here much (I get that!) but I was wondering if you could answer a few more questions for me. I don't know if you know my story but here it is in a nutshell: I got a fissure during a hemmie banding (Dec 2014) followed by 3 botox failed attempts than an LIS in Nov 2014. The incision site developed and abcess and started to form a sinus (the stage before a fistula) so I had to undergo another surgery during which my CRS removed the top layer of skin over about a 2cm square area to allow it to heal from the bottom up. It seems that the infection is gone but what I have now seems like a bad fissure that will not heal. I had this unroofing surgery 9 weeks ago today and I just bled on my BM. I am feeling like it means my LIS failed and I wanted to ask you about getting a second LIS.

Do you know how much muscle your CRS cut the first time? second time?

Did you have pelvic floor trouble while having a BM? This is my main problem. I am so tight down there that I can hardly get anything out, even gas. I am having trouble knowing which muscle(s) are the problem as it seems like my pelvic floor but yet shortly after the LIS things opened up so nicely down there. This last surgery made my muscles down there seize up completely! Sorry to ramble on. I am just wondering what to do now. Do you have any leakage issues after two LIS? Did your CRS do the second surgery on the same or opposite side?

How long did it take you to heal your fissure? Why do you think you were slow to heal? Thanks so much for your time and listening to me ramble on :)
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Next stop Mayo Clinic?

Postby owmybum » 10 Apr 2015, 14:22

Fantastic news SSK

:smilyhug: :Rock: :afsmile:

Thanks for letting us know xxx
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Next stop Mayo Clinic?

Postby SSK » 10 Apr 2015, 17:43

msimon wrote:Do you know how much muscle your CRS cut the first time? second time? Did you have pelvic floor trouble while having a BM? This is my main problem. I am so tight down there that I can hardly get anything out, even gas. I am having trouble knowing which muscle(s) are the problem as it seems like my pelvic floor but yet shortly after the LIS things opened up so nicely down there. This last surgery made my muscles down there seize up completely! Sorry to ramble on. I am just wondering what to do now. Do you have any leakage issues after two LIS? Did your CRS do the second surgery on the same or opposite side?


Hi msimon,
Of course, I'll try to answer as much as i can, no worries! :)

I am not sure exactly how much muscle was cut each time. I do know that the first time , my surgeon was admittedly :conservative". He told me this before the surgery because he said he prefers to cut too little rather than too much. So, when my pain didn't get better for 3 months after, he said it will be a good idea to go in for the 2nd surgery. No clue which side he cut.
I am not sure why I was so slow to heal. All I can think of is that I waited too long to get the surgery? I waited 8 months before getting the first LIS. I was just too scared and wanted to avoid the knife. But I came to a point where I just wanted my life back. I guess my muscles had "learned" to be tight and tense in all those months of being in pain.

I never had trouble having a BM per se but the pain after that did not get better for a long long time after both surgeries. That is what led the doctors to believe that the pain is actually coming from the pelvic area. I do not have any leakage issues whatsoever (I can't thank my wise surgeon enough for this). I read somewhere that using a squatty potty helps and I have been using it for 6-8 months. I can't say if it plays a huge role. Have you tried one?

What's your doctor's advice now? You have had a lot done in that area, so I would think that the recovery would be slow? The muscles do tend to get tight from being in pain/ stress/ fear of having a BM. I honestly don't know what to tell you other than getting a second opinion if you are not satisfied with your current doctor?
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Re: Next stop Mayo Clinic?

Postby SSK » 10 Apr 2015, 17:44

owmybum wrote:Fantastic news SSK

:smilyhug: :Rock: :afsmile:

Thanks for letting us know xxx


Thanks OMB! How are you doing?
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Re: Next stop Mayo Clinic?

Postby kamard2300 » 21 Jul 2023, 16:09

Hello SSK,
Could you please say hiw you did get better ?
Was it psychological? Thabks in advance I hope you are still fine
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