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Proctalgia Fugax or Pudendal Neuralgia? A real pain in the derriere!

cristiana

By cristiana
in Related Issues & Disorders

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cristiana Veteran
cristiana
Posted

Hello experts,

I wonder if anyone on this forum has ever experienced either PF or PN?   I was diagnosed with the latter about three years ago.   I am now suffering similar pain, sort of a brief painful electric shock sensation in the rectum, but the difference this time is the pain seems to go when I've been to the loo (BM).

I have read that this type of rectal pain can be related to IBS.   According to my gastroenterologist I have IBS AND celiac disease.   I had a clear colonoscopy last year, and a sigmoidoscopy two years before.  I don't think I have haemorrhoids and I have no bleeding.  My BM's haven't changed.   I had a colposcopy in the spring and gynae u/s and all was normal.  

I am going to have to book to see my gastroenterologist again - poor man is never rid of me - if it continues much longer but I wondered if anyone can relate, and if there was any self-help remedy that might be worth passing on?  And does anyone know what the difference is between the conditions?

Many thanks,

Cristiana

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trents Grand Master
trents
Posted

In the past, I have suffered with PF. If I recall correctly, it was shortly before my celiac diagnosis and I haven't been bothered with it since. That was going on 20 years ago. For me, it was not an electrical shock kind of pain but a sharp muscle cramping sort of pain. And it was pretty unpredictable. I can't remember if it was associated with having a BM or not.

cristiana Veteran
cristiana
Posted
  • Author

Trents... that's really interesting.   It first struck Tuesday after a walk, then I've had pain every day since but today's was far the worst.   The one thing that makes me wonder if it is PF is that according to Dr Google it seems it commonly hits at night and wakes people.  Mine is daytime. Do you remember getting it at night only?   

 

trents Grand Master
trents
Posted
6 minutes ago, cristiana said:

Trents... that's really interesting.   It first struck Tuesday after a walk, then I've had pain every day since but today's was far the worst.   The one thing that makes me wonder if it is PF is that according to Dr Google it seems it commonly hits at night and wakes people.  Mine is daytime. Do you remember getting it at night only?   

 

No, I don't remember getting it grabbing me at night at all. But then, it was a long time ago. What I remember is just that it happened during the day. I went to the GI doc about it and he told me it was likely PF. 

cristiana Veteran
cristiana
Posted
  • Author
(edited)

That's reassuring to know, Trents.   I will sound out my GP on Monday if things don't get better over the weekend.   I seem to remember my gastroenterologist telling me that IBS pain can be excruciating so perhaps this could just be a severe type of IBS pain.  It does feel a bit like a spasm. 

I've had a lot of pain in various sites along the pudendal nerve over the years.  When my doctor did an internal examination last time she thought she could see a few shingles lesions but tests proved inconclusive.   I guess I could have another bout of shingles which has kicked this pain off.

Edited by cristiana
RMJ Mentor
RMJ
Posted

I’ve never heard of either, I just wanted to say I’m sorry you’re having a new pain.

cristiana Veteran
cristiana
Posted
  • Author
(edited)
1 hour ago, RMJ said:

I’ve never heard of either, I just wanted to say I’m sorry you’re having a new pain.

Thanks so much, RMJ, I really appreciate your post.  Honestly, if it's not one thing it's another - I was only down the hospital for tests last week on something quite unrelated and having had the all clear, now this.  I think my doctors think of me as a walking medical mystery!  I've quite a bit going on in my life at the moment and possibly it's stress related - apparently PF can be...  

Edited by cristiana
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kagey Newbie
kagey
Posted

I have found a lot more success going to a colorectal surgeon as opposed to a GI doctor for large intestine matters.  I have pain after hemorrhoidectomy, so I "feel your pain".  

One thing that helps a LOT is to be on a pretty strict regimen of non-long-term but medium-term "helpers".  The most important one is fiber, up to three times per day - I tend to take 4 g at a time through Benefiber gummies or powder (which though made from wheat is gluten free, very strange but I can't tolerate any psyllium ones and I hate Citrucel (though it tastes good, I can't get it to dissolve except in hot water). 

Before anyone asks, I eat a large salad every day *in addition* plus look for high fiber foods.  I also take two docusate sodium (Colace) twice per day.  And I take Miralax if I've eaten a lot of carbs, so, yeah, a lot of stuff to keep my bum happy!

None of those are "addictive" but one has to be careful with Miralax more than the other two.   To repeat, I am prescribed this by my colorectal surgeon, so I'd suggest anyone consult their doctor before trying it.  I have had some "reverse" issues but other than the Miralax (again), the actions should be softening and bulking, NOT water retention in the stool...

Good luck, hope you can see a specialist about it.  I know that folks in wheelchairs and scooters tend to have those kinds of issues too, so a rehab doctor might help.

trents Grand Master
trents
Posted

kagey,

What form does your psyllium intolerance take? How do you react to it?

Are you wheelchair bound or otherwise rendered immobile? That's a lot of stuff to take to keep things moving.

cristiana Veteran
cristiana
Posted
  • Author
9 hours ago, kagey said:

I have found a lot more success going to a colorectal surgeon as opposed to a GI doctor for large intestine matters.  I have pain after hemorrhoidectomy, so I "feel your pain".  

One thing that helps a LOT is to be on a pretty strict regimen of non-long-term but medium-term "helpers".  The most important one is fiber, up to three times per day - I tend to take 4 g at a time through Benefiber gummies or powder (which though made from wheat is gluten free, very strange but I can't tolerate any psyllium ones and I hate Citrucel (though it tastes good, I can't get it to dissolve except in hot water). 

Before anyone asks, I eat a large salad every day *in addition* plus look for high fiber foods.  I also take two docusate sodium (Colace) twice per day.  And I take Miralax if I've eaten a lot of carbs, so, yeah, a lot of stuff to keep my bum happy!

None of those are "addictive" but one has to be careful with Miralax more than the other two.   To repeat, I am prescribed this by my colorectal surgeon, so I'd suggest anyone consult their doctor before trying it.  I have had some "reverse" issues but other than the Miralax (again), the actions should be softening and bulking, NOT water retention in the stool...

Good luck, hope you can see a specialist about it.  I know that folks in wheelchairs and scooters tend to have those kinds of issues too, so a rehab doctor might help.

Thank you so much for this advice.   

I hope to see a specialist next month as I am scheduled for a review.  I am grateful to say that the horrible "shocking" pain seems to have subsided.   I guess it could be a fissure or a haemorrhoid somewhere.  However, apart from the possibility of pudendal neuralgia, I did have a very complicated labour with one of my children and I have had pelvic floor pain issues and tightness for many years on and off which probably isn't helping at all.

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