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Re: Pudendal Nerve Symptoms ?
Posted: Sun Feb 26, 2023 7:30 am
by Violet M
Well, that sounds miserable. I wish the cure/treatment wasn't almost as bad as the disease sometimes. Maybe your pharmacist can suggest a drug that would work as well without as many side effects and you can ask the physician about it too.
Violet
Re: Pudendal Nerve Symptoms ?
Posted: Sun Mar 05, 2023 4:40 pm
by Barre
Violet M wrote:Well, that sounds miserable. I wish the cure/treatment wasn't almost as bad as the disease sometimes. Maybe your pharmacist can suggest a drug that would work as well without as many side effects and you can ask the physician about it too.
Violet
Hey Violet,
Another update,
The neurologist was a complete waste of time and it seemed he never even heard of PN and just prescribed me some antidepressants and amitryptilin and ordered a CT scan of my lower back wich showed some discus bluging but only minor.
my GP is very caring and nice but she does not think it's PN and thinks I was googling too much, she prescribed physiotherapy however and I have found a PT who specialises in the pelvic region and is familiar with sciatica and PN related issues .
The colonoscopy was terrible and did not really reveal anything wrong but seems to have flared my symptoms abit however.
Anyway, I definatly want to getto the bottom of this and rule out of my symptoms are related to PN or PNE,
I emailed doctor Bollens and will call doctor Katleen Jottard from Brussels, she is rated as an Elite on PN in medfind.com with several peer reviewed articles under her belt and hopefully rule out if it's PN related or something other. My symptoms are pretty mild, sometimes intermittent but still bad enough to cause serious discomfort.
Re: Pudendal Nerve Symptoms ?
Posted: Tue Mar 07, 2023 6:08 am
by Violet M
Hi Barre,
Thanks for the update. That's good that you have found a knowledgeable PT and hopefully they will be able to help you. I'm sorry the neurologist wasn't very knowledgeable. The one I saw when I had PNE wasn't helpful either.
I've not heard from anyone who's been to Kathleen Jottard. That would be great if she can help you figure out what's going on. If you go to her please report back on how it went. If you feel comfortable, maybe you could ask her to email us at
admin@pudendalhope.org if she would like to be listed on our website.
Best of luck with your treatment plan!
Violet
Re: Pudendal Nerve Symptoms ?
Posted: Tue Mar 07, 2023 9:53 pm
by Barre
Another update,
I just got back from the neurologist to evaluate and I must take back my words, he does know about the pudendus nerve and he actually had a patient last week with PN , although he told me that it's a rare diagnosis and it's hard to make this diagnosis, he does not make the diagnosis but a urologist can when they palpate the nerve through the anus, that is how the man he saw last week got the diagnosis and he even refered me to a prof in a nearby clinic who potentially could diagnose me. But he told me to take it one step at the time and we should focus on the sciatica nerve as he thinks that is the main problem and it's unlikely that both nerves are affected, although it's not impossible. He ordered an EMG and I will get it done by the end of the month and made an appointment with an urologist, I should continue the amitryptilin+trazodone for now. I also asked him that my symptoms seemed to have flared after the colonoscopy and he told me that only the pudendal nerve could be affected by , it does not damage the nerve but could irritate it and it's temporary. (btw, he told me this man ordered neurogenic drugs from the US and he was as good as cured; I will ask him what drugs exactly next time I see him ! )
Did my first session with the PT today and he confirmed that it's most likely the piriformis muscle and pelvic muscles that are irritating the nerves as he felt they where very tense and thiese can in turn put alot of pressure on the nerves, he did some dry needling, stretches and certain massage techniques and after the dry needling I immediatly felt relief in my buttocks although my perineum remained sensitive when sitting and I felt pretty good, however, it did not last and my symptoms came back after sitting and seem even worse, but off course I can not expect to get lasting relief after only one session, I have another appointment next week to evaluate.
I will let you know if I ever get to see Katleen Jottard .
Re: Pudendal Nerve Symptoms ?
Posted: Thu Mar 09, 2023 4:41 am
by Violet M
Well, that sounds more hopeful. Glad to hear you are finding some knowledgeable providers who can help you! Thanks for the update.
It's not unusual for PN patients to have a flare-up after a colonoscopy. Hopefully the flare-up will calm down soon.
Violet
Re: Pudendal Nerve Symptoms ?
Posted: Wed Oct 18, 2023 8:43 pm
by Sk8rcruz
I just came onto the forum to search 'colonoscopy," because I've had serious problems passing stool since a colonoscopy several months ago. Ive made some progress with PT, being able to have an unassisted BM maybe once a week. When I can pass, the stool is ropy even though my PT has found minimal tightness. Luckily I saw the YouTube Q & A with Dr. Hibner and learned that PN sphincter nerve issues are highly unlikely unless both sides have PN. With that knowledge I have hope that continued PT will eventually resolve this issue. Has anyone else had delayed, long-term pelvic muscle exacerbation from a Colonoscopy?
Re: Pudendal Nerve Symptoms ?
Posted: Sat Oct 21, 2023 4:52 am
by Violet M
That sounds discouraging. I haven't heard of the problem you are describing here on this forum before. I expect you are still looking for answers because the physician who did the colonoscopy doesn't have an explanation?
Violet
Re: Pudendal Nerve Symptoms ?
Posted: Thu Jun 13, 2024 3:45 pm
by DebBelgium
[/quote]
Barre wrote: ↑Tue Mar 07, 2023 9:53 pm
Another update,
I just got back from the neurologist to evaluate and I must take back my words, he does know about the pudendus nerve and he actually had a patient last week with PN , although he told me that it's a rare diagnosis and it's hard to make this diagnosis, he does not make the diagnosis but a urologist can when they palpate the nerve through the anus, that is how the man he saw last week got the diagnosis and he even refered me to a prof in a nearby clinic who potentially could diagnose me. But he told me to take it one step at the time and we should focus on the sciatica nerve as he thinks that is the main problem and it's unlikely that both nerves are affected, although it's not impossible. He ordered an EMG and I will get it done by the end of the month and made an appointment with an urologist, I should continue the amitryptilin+trazodone for now. I also asked him that my symptoms seemed to have flared after the colonoscopy and he told me that only the pudendal nerve could be affected by , it does not damage the nerve but could irritate it and it's temporary. (btw, he told me this man ordered neurogenic drugs from the US and he was as good as cured; I will ask him what drugs exactly next time I see him ! )
Did my first session with the PT today and he confirmed that it's most likely the piriformis muscle and pelvic muscles that are irritating the nerves as he felt they where very tense and thiese can in turn put alot of pressure on the nerves, he did some dry needling, stretches and certain massage techniques and after the dry needling I immediatly felt relief in my buttocks although my perineum remained sensitive when sitting and I felt pretty good, however, it did not last and my symptoms came back after sitting and seem even worse, but off course I can not expect to get lasting relief after only one session, I have another appointment next week to evaluate.
I will let you know if I ever get to see Katleen Jottard .
Hello Barre, I just saw your post and wondered if you could give the name of your neurologist ? I live in Belgium also and I am looking for someone that could help me. Also do you have some feedback about your appointment with Dr Jottard ? I have an appointment with her tomorrow.
thanks !
Deborah
Re: Pudendal Nerve Symptoms ?
Posted: Tue Jul 02, 2024 12:34 pm
by jvdd
Hi Deborah,
Would you mind sharing your experience with dr. Jottard here or via pm(can be in french/dutch/english)?
I'm from brussels and have had an appointment with dr Jottard a year ago (CHU Brugman). In short she just referred me to the pain clinic because even if it was PN, she couldn't do anything about it she said. Which i found weird.
In the pain clinic they don't do injections because the doctor there doesn't believe it works. They give medication like amitriptyline and lyrica, say you need a psychologist and to massage the area with lavender oil... which is of course ridiculous because the pain is unbearable, not sure what lavender oil will do when only strong painkillers give some effect.
Suffice to say the experience there was really bad.
The following procedures that i tried in different hospitals/cabinets around Belgium are:
Kinesitherapy, Osteopathy, dry needling, cupping, massages, external radiofrequency sessions(for vulvodynia related pain), internal trigger point massages, Prolotherapy(sugarwater injections), pelvic wand, EMG scan, MRI scan, RX scan, Blood tests, Cortisone injection in the alcock canal, Cortisone injection in the piriformis, TENS machine, Botox injection in the piriformis, Pulsed radiofrequency on the sacral root nerves(which form the pudendal nerve).
All without much improvement. If you have any info/resources you can share(or anyone else reading this) or if there is someone who reads this and has further questions, please send a pm.
Also had appointments with Dr Beco and Dr Renaud Bollens for anyone interested in how that went.
Re: Pudendal Nerve Symptoms ?
Posted: Tue Jul 02, 2024 10:01 pm
by Violet M
Hi jvdd,
You have been through a lot. Do any of the docs think it's PNE (entrapment) vs. just PN?
I think the pain clinic may have a point about injections not working that well, based on my own experience and what I've heard from other people, some who got worse from injections. But pudendal nerve blocks can be valuable in determining a diagnosis.
There are people who might benefit from seeing a psychologist and massaging with lavender oil but I wasn't one of them, and I know very few people on this forum who are. Some people say the mindbody approach worked for them. But if someone has a nerve entrapment, I don't see how all of the psychology and massaging in the world would help when the nerve is squished between ligaments. It can be very difficult trying to determine if you have a true nerve entrapment though, and I think surgery only makes sense if your quality of life is already so bad you are willing to take the risk of possibly getting worse.
Violet