Need Advice

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Need Advice

Postby mysorebutt » 09 Jan 2018, 18:52

I have an 18+ year history of chronic pelvic floor dysfunction, and more specifically, chronic levator spasm and pudendal neuralgia. As a result of this chronic pelvic floor tension, I developed recurrent fissures. For the first several years, the fissures would heal with conservative treatment. About two years ago, the fissure failed to heal with conservative treatment and I opted to have botox injections. The injections flared up my underlying pelvic floor tension, but did eventually result in the healing of the fissure. About six months ago, I developed another fissure and was offered LIS by by CRS. I asked to repeat the botox again rather than doing surgery, which my CRS agreed to. The botox seemed to be less effective in treating the fissure this time around, but did reduce the severe pain symptoms that I was having with the fissure. About three weeks ago, I had another major fissure flare up and the pain is unbearable (and I have a very high tolerance for pain). I contacted my CRS, but her next available appointment isn't until May. There is no way I can wait this long so I am currently trying to get a sooner appointment to discuss treatment options.

My questions is, given that my recurrent fissures are most likely being caused by my underlying pelvic floor tension and not necessarily due to tension in the sphincter or constipation, etc., should I push for another botox injection or ask for LIS surgery instead. On one hand, the botox does seem to help reduce pain, but it is not solving the issue. However, if a spastic sphincter isn't my main issue causing fissures, then LIS could be risky and could have irreversible consequences. Also, my CRS does not perform many LIS surgeries in her practice as she typically has good results with botox. She only does a handful of LIS surgeries per year, at most. This concerns me. If anyone has any advice, it would be greatly appreciated.
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Re: Need Advice

Postby Mypoorbutt » 10 Jan 2018, 07:48

Hi, sorry to hear your suffering my heart goes out to you as the spasms from fissures are truly the worst pain I have felt and I too have a high pain tolerance.
I can’t imagine that LIS would cause any long term incontinence as the effect it has at least from my own experience is noticeably less than Botox, as the Botox totally numbs the muscle whereas LIS just reduces its tone. I never had a proper spasm post Botox but had major level ten spasms after my LIS. But LIS did eventually heal me where Botox didn’t. I have never had any incontinence issue and unless my crohns flares I don’t have spasms.
Everyone is different and has fissures for a different reason mine was due too high sphincter tone and 30+ BMs a day because of my crohns.
No one can say whether LIS will be the answer to your fissures but I would say it’s worth a try. They never cut the full length of the IS and it will heal back to at least 80% of its original tone after 2 years. Again some people think it’s best to go with a surgeon who does it often....I’m one of them...others think as it is basically just a small managed cut any surgeon will be fine.
Only you can decide but you must be amazingly strong to be dealing with spasms so often
Really good luck
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Re: Need Advice

Postby Crying in autumn » 10 Jan 2018, 17:58

I have had bleeding over a year with bm and pain and the urge to keep pushing . Ive had 2 colonoscopies they saw 1 small hemmeroid . On the 2nd colonoscoly he saw a large skintag and 1 small hemmeroid . I asked how can there be so much blood .he said idk maybe your wiping too hard . I couldnt believe his mouth.
5 days later i was rushed to emerge with severe blood loss and needed a transfusion . The other surgeon came in and suspects a fissure . He gave ditizam ointment 3x day its helping a bit but still lots of pain still get pushing urge sometimes.I almost always have sharp pain and throbbing. I have to get another transfussion.iIn 4 blood test my hemoglobin went from 81 to 88 to 75 to 80 all in 2 weeks . They put me on iron without checking my iron .
The pain is worse than having my for kids . Idk if this cream will work :(
I do a sitz bath after every bm idk what else to do
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Re: Need Advice

Postby mysorebutt » 10 Jan 2018, 19:23

Mypoorbutt, thank you for your response, I appreciate the insight. Because of my underlying pelvic floor issues, I am concerned about doing surgery and that is why I have opted for Botox in the past. My main concern is that it’s the chronic tension higher up in the anal canal that is causing the fissure problems and not necessarily a tight sphincter. I’ve had an anal mannometry done several years ago that indicated a fairly normal resting pressure, but that I did have evidence of dyysynergia. The Botox has helped some in the past but has not fully resolved the problems with Fissures so if I felt like LIS could end this cycle of fissure flare up, it would definitely be worth the risk. As for my inexperienced doctor, unfortunately, due to issues with insurance, she is one of only about 2 options that I have or it would be self pay. I am on social security disability so self pay is not really an option. Thanks again for the response.
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Re: Need Advice

Postby Maureen57 » 12 Jan 2018, 11:02

Does anybody have a problem with their inner sphincter of their rectum?
I for the life of me cannot get stool to move past the inner sphincter and when I do it's small Pencil Thin!
Not constipation hard but I've had several procedures where they put barium enema through my GI tract and I've had trouble since. Now I can't use the bathroom on my own and it seems like my inner sphincter cannot or will not relax or open to expel any feces any ideas?
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Re: Need Advice

Postby mysorebutt » 16 Jan 2018, 12:49

Maureen57, I am sorry to hear to hear about the issues you are having. I sounds like you could be having some pelvic floor related issues or possible dyssynergia. I have severe pelvic floor dysfunction as I have several muscles within the rectum that are chronically in spasm and I also have dyssynergia, which means that my muscles do not function properly during a bowel movement to allow for the relaxation necessary for easy bowel passage. You may want to discuss these issues with a GI doctor or someone who specializes in bowel motility issues.

On a different note, my CRS scheduled me for repeat botox injections today (Tuesday), but unfortunately, my insurance company did not make a decision on the preauthorization request before the procedure was to take place and I had to cancel the procedure. I did not want to take the risk of a denial and then having to pay out of pocket for the botox. Now I just have to wait and hope that my Dr will reschedule the procedure fairly quickly and that my insurance company will approve the procedure. I am extremely disappointed since I was really looking forward to getting the botox done and hopefully seeing some improvement in symptoms. For the time being, I am just having to deal with the pain as best I can as I wait.
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Re: Need Advice

Postby D ee » 01 Mar 2018, 08:08

Hi Maureen,

my internal anal sphincter is tight too.I think i also ahve a lesion in my anal canal.Imnot sur if this is causing me tightness of the internal sphincter too.have you tried internal pelvic pt?
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