New with Questions

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
strongsteve
Posts: 18
Joined: Mon Jan 09, 2023 7:46 pm

New with Questions

Post by strongsteve »

A few months back, I had anal surgery to drain an abscess. I then want on to have further anal surgery to fix an anal fistula. After this surgery, I noticed this twinge of pain in my right groin only when I sat. I really didn't think much about it but it has gotten much worse. My symptoms now include:

1. Pain in the right groin (behind and slightly right of the scrotum
2. Pain in what seems to be my testicles
3. Pain in the perineum
4. Pain in upper hamstrings
5. Frequent urination
6. Tenesmus

These pains are better in the morning and get progressively worse throughout the day. Sitting is very painful and symptoms tend to be much better while standing.

Diagnostics I have had with normal findings:

1. Urine analysis
2. Pelvic CT with contrast

Could stretching the anus during surgery damage the pudendal nerve? Has anyone else gotten PN after anal surgery? Colorectal surgeon thinks it is just prostatitis and Urologist just calls it CPPS. Are these classic perineal branch of PN symptoms? Are these symptoms more likely to be the Posterior Femoral Cutaneous Nerve instead? If this was caused by the anal surgery, wouldn't the symptoms have been as they are now when I woke from surgery as opposed to getting progressively worse? Anybody in the DFW area of Texas have any good experiences with care providers? What sort of diagnostics should I try to get now?
stephanies
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Joined: Mon Oct 25, 2010 3:07 am

Re: New with Questions

Post by stephanies »

Hi StrongSteven,

I’m not really sure, but it might be possible. It does sound like your symptoms could be in the distribution of the pudendal nerve. I have heard of people whose symptoms began after colonoscopies or other surgery in the area. What kind of doctors have you seen for this? Is there a doctor familiar with pelvic pain that you could consult with?

Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
strongsteve
Posts: 18
Joined: Mon Jan 09, 2023 7:46 pm

Re: New with Questions

Post by strongsteve »

I have seen my colorectal surgeon, urologist, GP, and Pain management doctors. None of them have any experience with PN. My pain doctor wants to do a hypogastric plexus block but has very little experience doing it. I cant take any more time off work so it is going to be difficult to get in to see a PT.
April
Posts: 615
Joined: Fri Jun 19, 2015 9:59 am

Re: New with Questions

Post by April »

Hi Strongsteve,

Yes, a few visits to an experienced pelvic pt could be helpful in the diagnosis process, so if you can get a referral (and time off work) to do that, it could be really helpful.

I also don't know the answers to all of your questions, but some of those symptoms do sound like pn (e.g., sitting pain and the pain that progresses as the day goes on). For most people, pn pain is the lowest (or not present) after you've been sleeping, so I would not conclude that it is not pn because you didn't feel the pain when you woke up after the surgery. Also, pain medication (which people are usually on after a surgery) would mask the pain. Burning pain is a common way to describe the nerve pain (but there are definitely other kinds of pn pain). Do you have burning pain?

April
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Violet M
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Re: New with Questions

Post by Violet M »

Hello Steve,

I agree with Susan that it sounds like your pain and symptoms are in the distribution area of the pudendal nerve, but to really get a proper diagnosis it's important to see a specialist and at least be evaluated by a good PT to determine what's really going on. There are several in the Dallas area. They are listed on our main website in the left hand menu under list of doctors and list of PT's at http://www.pudendalhope.org. I don't know of any other than the ones at that list. Before opting for invasive treatments you may want to consider less invasive treatments to see if they work because you never know for sure how you will react to an invasive treatment such as an injection. It could be that your pelvic floor muscles tensed up from the pain after the procedure and they just haven't gotten back to relaxing or it could be the nerve is irritated for some other reason. I know it's hard to take off work but hopefully you can at least get an evaluation so you know what you are dealing with.

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.
strongsteve
Posts: 18
Joined: Mon Jan 09, 2023 7:46 pm

Re: New with Questions

Post by strongsteve »

Do you think it is possible that the perineal branch of the PN was damaged or irritated from stretching my anus during surgery? I have an appointment now with one of the doctors on the list. I saw a neurologist and they did an EMG on the legs. I think that was a complete waste of time. The sitting pain is one thing but pain in the scrotum is horrid. I have been taking Gabapentin and Oxycodone. The oxycodone has made me terribly constipated. What is the consensus on which is better between gabapentin and lyrica? I have a 3T pelvic MRI scheduled here locally so hopefully it will at least exclude things. Thank you all for your replies.
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Violet M
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Re: New with Questions

Post by Violet M »

Hi Steve,

It is possible for a procedure/surgery in the pelvic area to damage or irritate nearby nerves, including the pudendal nerve or its branches. Since the pain you are having is in the distribution area of the pudendal nerve, it’s certainly a possibility you have to consider.

Here are some suggestions for dealing with constipation:
https://www.pudendalhope.info/node/32
I have the best luck with magnesium citrate, high fiber diet, and taking a couple of tablespoons of ground flax seed daily (I mix it in banana).

I’ve had better luck with lyrica than gabapentin and my general sense is that many patients who have posted here had better luck with lyrica but we haven’t done a scientific survey so I can’t say for sure what would work best for you, especially since everyone is different. I think lyrica is a controlled substance so it might be harder to get your doctor to order it. And you have to be careful when you discontinue it to cut back on it slowly.

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.
strongsteve
Posts: 18
Joined: Mon Jan 09, 2023 7:46 pm

Re: New with Questions

Post by strongsteve »

I had a nerve block done on the pudendal nerve and genitoformal nerves. They made me numb and took away the pain briefly but it wore off the same day. The doctor wants to these weekly for 7 weeks. My question is .. is it possible that these repeated injections will cause scar tissue and an entrappment?
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Violet M
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Re: New with Questions

Post by Violet M »

Hi Steve,

That's a lot of injections compared to what the typical protocol is that we have heard of most PN physicians using. What medication is being used in the injections? Professor Robert, one of the early pioneer PNE doctors, recommended that you should not have more than 3 corticosteroid pudendal nerve blocks, due to possible damage to the nerve. https://www.pudendalhope.info/sites/def ... Robert.pdf
Lidocaine can also cause nerve damage. https://pubmed.ncbi.nlm.nih.gov/16135351/

I can't say for sure whether that many injections would cause scar tissue but I can understand why it is causing you a red flag. There are patients who have had numerous prolotherapy injections who developed scar tissue from them but I don't know precisely how many they had. The reality is that there are very few patients who have posted on this forum who obtained permanent relief from pudendal nerve blocks. I see nerve blocks primarily as a diagnostic tool, but maybe your doctor has good reasons for what they are recommending. I guess what I would ask is whether there are any studies that show that the protocol they are recommending is effective. And they should tell you the risks involved. There are patients who have posted on this forum who had long-term increased pain from nerve blocks so I think that you are smart to use caution in making your decision.

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.
strongsteve
Posts: 18
Joined: Mon Jan 09, 2023 7:46 pm

Re: New with Questions

Post by strongsteve »

The 7 weekly nerve blocks use the gentle pain reliever lidocaine and steroidal anti-inflammatory medication. (according to the web site). I had a bit of a flare up after the first one. This is direct from the web site of the clinic.

Why a series of injections?

Trigger point and peripheral nerve block injections work best in a series, as it can take multiple injections to reset the length tension curve of the muscle and retrain it to remain in the lengthened state. There is a positive accumulative effect with each treatment. Due to the size of the pelvic floor, and the large number of branches off of the pudendal nerve, the best chance for pain relief is completing a series of nerve blocks so that all of the branches off the nerve can be treated.

How long does treatment usually take?

The treatment series is one visit a week for six weeks, with physical therapy occurring concurrently. If your treatment requires medication management that may last up to six months. Medication management is not a long-term plan.


Does that sound like the general thinking around the forum?
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