My story, suffering for 6 months, no diagnosis

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Horsegirl123
Posts: 1
Joined: Sat Mar 26, 2022 6:35 pm

My story, suffering for 6 months, no diagnosis

Post by Horsegirl123 »

Hello, I’m 28F who has been suffering with anal burning when sitting down or when clothes touch the area since the beginning of October. Before this started I was a competitive horseback rider, I have since had to sell my horses since I am unable to ride and the long drive out to the barn is unbearable. When my pain first started I thought I perhaps had a hemorrhoid or some kind of anal issue. My primary doctor couldn’t see anything and told me to wait 3 weeks before seeing her again to see if it would improve on its own. Feeling discouraged I paid privately to see a doctor who told me I had an anal fissure despite never having any bleeding. She prescribed a cream I used for a few months. The cream seemed to be making things worse and where before I could sit normally on a pillow and just had to avoid hard surfaces, after a few months I was no longer able to sit at all.

More recently the pain has travelled to my vaginal area and I have some urethra burning for minutes after going pee. My doctor believed I may have some Vulvodynia and prescribed 10mg of amitriptyline. I’m not sure how effective this has been. My primary care doctor seems to not want to deal with me anymore on this, I have been waiting for a referral to a colonrectal surgeon for months and still have no appointment date. I live in Canada and we have very long wait times.

I am now wondering if what I have is PN. My main symptoms are: anal burning with sitting, anal pain with clothes (wearing a thong would probably kill me), vaginal burning on/off and sometimes urethra burning or “electric stings”. I have been to a pelvic floor physio who thought my muscles felt good and not too tight. Does this sound like PN to anyone?
mjl
Posts: 5
Joined: Wed Mar 23, 2022 8:37 pm

Re: My story, suffering for 6 months, no diagnosis

Post by mjl »

Hi there. I'm sorry for your suffering, as you read through this site you'll see you're not alone and there are promising treatment options. While I'm not a doctor, the activity/ possible cause (horseback riding) and your symptoms would be consistent with PN.

Lots of good information on options throughout this site. Hang in there, you're at the beginning of finding options, not at a dead end.
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Violet M
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Re: My story, suffering for 6 months, no diagnosis

Post by Violet M »

Hi Horsegirl. That must have been really difficult letting your horses go. I am a horse girl too and my horses were like my best friends.

The pelvic floor PT should be able to put pressure on the pudendal nerve when doing a pelvic exam and press at the ischial spine and Alcock's canal to see if there is tenderness along the course of the pudendal nerve. However, the inferior rectal branch of the PN can branch off of the main branch at different places for different people. If it comes off the main branch above the ischial spine, the PT would be less likely to be able to elicit pain when pressing on the nerve and you would be more likely to just have anal pain without vaginal or genital pain.

Just to rule out any obvious problems, it's always a good idea to have a lumbosacral MRI, especially if your insurance will cover it. If other problems are ruled out, since all of your symptoms and history are consistent with PN, as mjl said, you could be on the right track with that diagnosis.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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