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newish here, hello

Postby peppermint » 03 Aug 2023, 04:40

Hello
Read this brilliant forum a lot, is such a comfort to know there are others who understand what this condition is like – even though I’m so sorry that ANYONE is suffering.
I’ve been dealing with this current fissure for nearly 3 years now.
GP initially prescribed xyloproct (piles cream), which did in fact work a bit, but I knew it wasn’t completely healed and the burn was still there. Having used GTN several years in the past and having awful headaches from it I was reluctant to try it again. So I embarked on an self care journey….which failed. This was all during covid so was hard to see a GP face-to-face.
I did see a lovely locum GP about a year after it all started who did blood tests and stool tests to rule out any bowel conditions. She then suggested GTN again and I was desperate and in pain so thought sod it, I’ll try again. Did some reading and discovered it’s best applied externally around the anus, I tried this, and low and behold...no headaches!
I used the GTN for 8 weeks and it felt 99% healed. I stopped as per instructions, and you’ve guess it...it came back.
Went back to GP and asked for referral, only way to get one was to go private (I’m in UK). So saw CRS last May (2022), he said to use GTN again, this time for at least 3-6 months as it can take much longer to heal than the 8 weeks given.
I did this and all was ok-ish – I knew it wasn’t healed fully but was working enough that it wasn’t impacting my life.
Then October comes along and wham…..for no reason I can fathom it comes back with a vengeance. Pain so debilitating I could not walk. It was like being skewered with a cactus over and over. I confess to having some very dark thoughts during that time, it was just so excruciating and would last from bowel movement in the morning, for hours after, getting progressively worse until it reached a crescendo about 3-4 hours later, when it would then very, very slowly recede, by which time I’d need to go to the loo again (am a twice a day person), and the cycle starts again.
Had tel apt with CRS, he put me on diltiazem….2 weeks later and it’s like a miracle cure. So much better, and not pain much!!!! Hallelujah!
Then the rash came over Christmas. If you’ve experienced it, you know the intensity of the itching – insects crawling over your anus. I also had discharge from the rash. And I could feel the fissure beginning to rear its ugly head again.
Spoke to CRS who said Botox is next. So January this year I had Botox in clinic, no sedative. It hurt (a lot) but only for the very short duration of the actual injections. He used a high dosage of Botox as he finds that more likely to work and no side effects.
Well, I went home feeling great. But next day, and over next few days, it got worse. Not the debilitating pain from October last year. But enough pain and discomfort that I couldn’t cope with my new call handling job and had to give it up.
I know Botox can take a good few weeks to really start to kick in, so I waited. And it did eventually begin to ease up. I would have good days where I didn’t feel anything, and not so good days, where it burned and hurt, but never the awful pain level from before. There’s no rhyme nor reason to how it will behave from one day to the next.
I went back after 3 months for check up, and CRS said was still not healed at all, and words to the effect that he wasn’t sure why I wasn’t in more pain.
He gave 3 options -
1. Leave it and see.
2. An even higher dose of Botox and EUA, with possible fissurectomy if he thinks it necessary (he’s very conservative and doesn’t want to intervene unless absolutely essential).
3. LIS – he’s reluctant to do this as I am female. He openly said he hadn’t done one for a long time, and had never done one on a woman.
So for the last 3 months I’ve chosen option 1.
I have a run of good days where it almost feels normal, no pain or bruising. Then I’ll have a run of bad days where it can vary from not being able to walk comfortably and feeling like I have a bruised golf ball up my arse, to milder burning and soreness.
It goes up and down, good days/bad days. It’s so mentally exhausting.
What I do think is that I don’t have the spasms any more. I feel the pain of the fissure and the spasms are different. I don’t have the passing glass, of the jabbing knife like in the beginning. I have burning, bruising, deep discomfort, but not the acute knife in arse feeling.
Maybe because it’s chronic for so long.
The problem is that with each run of bad days, it gets that little bit worse.
So I know I’m going to have to bite the bullet at some point and make a choice on option 2 or 3.
Or even get another opinion. But I don’t know how to go about that. I don’t want to cut my nose to spite my face, as this CRS has been very sympathetic and kind. I’m just concerned about his lack of doing many LIS recently and none on women.
Just to add, like so many others, I watch what I eat, lots of fruit (a lot) and veggies, careful with meat if I eat it at all, NO STODGE. I use a macrogol with every meal (yes that feels a lot, but CRS says is fine). I use a sitz bath after every toilet to keep clean more than anything. Use a hairdryer to dry after. Am using breathing and abdominal technique when going to toilet to aid going.
I’m just in a limbo about what to do next. Scared of all options. Life it totally dictated by my arse and how it feels and where I can go, and when. I need to be near home to go to the loo so I can clean up as I need to for example. Utterly miserable. It’s like living on eggshells.
Sorry for this mahoosive post. Well done if you got to the end! And thanks for reading. :thankyou:
Just as an aside, I really feel like this is a condition which isn’t researched enough, given the pain levels involved and how it affects your life, it feel under researched. My CRS said it’s the most painful condition he deals with and one he wouldn’t ever want to have himself.
I did see a clinic in Dubai that uses a laser to seal the fissure and then a procedure to relax the muscle. But I’ve been unable to find anywhere in the UK that does anything like this.
peppermint
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Re: newish here, hello

Postby GrrrAF » 03 Aug 2023, 07:02

Hello peppermint,

I know your pain and suffering. I had 2 bouts of anal spasms lasting for many weeks followed by months of pain and low QOL where I couldn't plan to go anywhere after BM's because I had to plan to be in bed for some part of each day. I didn't even know I had fissures until they healed with scar tissue and were discovered during an exam with anoscope by 2 different specialists over year later! But my original GP who missed the fissures did diagnose hypertonic pelvic floor and suggested pelvic floor physio which I finally tried and ultimately healed me. I now do self therapy regularly to prevent future fissures and muscle tightness as I can't imagine going through a third anal spasm/fissure episode, what that would do to me mentally and physically as I feel I am already permanently damaged from long-term injury of the anal sphincter:(

So my advice to you is to treat the source of fissure; if due to tight pelvic floor, see a physiotherapist asap make sure they specializes in that area.

You are right not much info about condition especially anal spasm; I couldn't find anything during my times of extreme suffering and my Dr. refused to give me meds when first diagnosed. Check @yourfriendlyproctologist on youtube great educational videos.
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Re: newish here, hello

Postby peppermint » 03 Aug 2023, 11:36

Thanks for the reply. I'll definitely look into hypertonic pelvic floor physio. Never heard of it, so interested to read and find out more. Anything to try and prevent surgery. And thanks for the youtube link.
The roller coaster is one that's hard to explain to people who've never experienced this particular condition. And to be honest, it's not like I go around talking about my bum to just anyone, like you would another type of injury!
Cheers :D
peppermint
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