What to do now??

[Suzysheep]

I have suffered with a chronic anal fissure for 3 years after an operation for hemmorhoid banding. I used all the topical ointments, had Botox, had tests to determine my anal resting pressure ( which is within the normal range) and finally an internal advancement flap to cover the fissure ( July 14) . The flap surgery caused another tear... Which has healed up... And so has the flap.

I am left with awful burning stabbing pain. I can't sit , I can't stand.... But feel better if I walk a bit. I am taking 300mg gabapentin x2 morning and evening which is only taking the edge off really.

I don't know who to turn to and what to try next. My colorectal consultant says it is now neuropathic pain.

Any ideas??

[StevenM]

Suzysheep - this is very similar to my past history. I have had both fissures and fistulas and an island flap repair then chronic long term severe unilateral neuropathic pelvic floor pain. Prior to the pelvic floor pain I was under a top colo-rectal surgeon (who has since retired) and then at the onset of the neuropathic pain I was referred to a neuro-surgeon/pain specialist. It has been a long-term battle without any major breakthrough and if there is one thing that I have learned from this over the years it is that one's resultant state of mind from long term pain has to be treated and nurtured as well as the physical side of the pain.

Where are you based?

[Suzysheep in reply to StevenM]

Hi Steven,

I am in the UK.

I'm so sorry to hear you have not had any break through s in your pain.

I agree, long term pain has at some points reduced me to an anxious ball of weeping stress. I take anti anxiety meds now though, and I feel sane most of the time!

Where are you located?

What is an island flap?

[StevenM in reply to Suzysheep]

I am just outside London. The island flap repair was linked to an anal sphincterotomy procedure that I had.

Has your colo-rectal surgeon referred you on to an appropriate specialist? As you may be aware, there are only a handful in the UK who specialise in this area.

I have been under Dr Baranowski and his team at the NHNN in Queen Square for quite some time now.

Do follow it up and keep us posted and good luck.

[Pepper1977]

Look up the pudendal hope website, sounds like pn

[Suzysheep]

Yes pepper.... The more I read on pn the more I think I've got it.

What would the treatment be?

Steven, what treatment are you receiving and has it been any help?

[StevenM in reply to Suzysheep]

Four years ago I had a Sacral Nerve Stimulator fitted plus I am on Oxycontin. The SNS has helped although it is not right for everybody but I would expect that you would undergo various nerve blocks to start with to determine which nerve is affected before an action plan is suggested to you.

[Ekeyte84]

Hi suzysheep. Sorry to see you've been thru so much but I totally get your worries. I've been down such a similar route to you with fissures, Botox etc. only now after banding like you had, not to mention 5/6 yrs of painful symptoms am I on a surgeons list to have ventral mesh rectopexy as they found pelvic muscle prolapsing back and front during EUA exam under anaesthetic.My advice really is to push for tests and demand more info. I'm on gabapentin too as they thought I had neuropathic pain issues but it only takes edge off, I'm NEVER pain free. the dose can be increased but GP must do that for you. Hope this info helps, please don't give up

[Suzysheep]

Thankyou Ekeyte84,

Yes.... We do sound similar. I wish I was told about all the risks to your nerves from surgery before I had anything done. I would rather live with hems and fissures than this burning rod of fire that's constantly up my rectum.

Appointments just seem to take so long, and in the mean time I feel lost. I bombard my CRS with emails but correspondence is slow.