Came here to share my experience and maybe get some support and advice. Anyway, I just ended my first year with pain in my anal sphincter, constipation, urinary and sexual problems.
In June 2015 I had laser surgery to reduce the size of my prostate. I was also having, at the same time, my third flareup in 4 years of what was diagnosed by a urologist in 2013 as Chronic Pelvic Pain Syndrome. Symptoms were mostly urinary which were waking me from sleep about every 30 minutes (strong urgency and frequency). I also had pain in my perineum and weird sensations in my penis.
After the laser surgery on my prostate things changed. The urinary symptoms improved and the perineal pain disappeared. They were replaced with a constant pain (4-7) in my anal sphincter muscle along with severe constipation. I also completely lost the sensation of orgasm. My doctor later told me he probably shouldn't have operated (he was new, just out of residency). Since then the anal pain has decreased maybe 10-20% and my sensations during orgasm have come back to about 50% of where they were. I continue to experience urinary urgency and frequency but that really doesn't bother me.
3 months after the surgery I saw a GE and was eventually diagnosed with Pelvic Floor Dysfunction. Did biofeedback which helped me pass stools but did nothing at all for the pain. So now I am seeing a Colo-Rectal surgeon. First he gave me a numbing cream which did nothing (sometimes made it worse) then valium (10mg x 3) which also did nothing. According to him my next step is a Pudendal Nerve Block.
I am trying to get into physical therapy before that but am having insurance issues since my hospital's coding doesn't recognize Pelvic Floor Dysfunction as something a male can get. I am also not completely convinced of the diagnosis.
I am not particularly optimistic about the nerve block resolving the issue but have been told that if it works then my treatment might change. I am managing the pain mostly with cushions and meditation. Cold packs work while I'm using them but later the pain comes back worse. Hot baths sometimes help a little. Marijuana makes the pain allot worse. The hydrocodone I've been taking for years for arthritis in my right knee barely makes a dent in the pain and I don't want to increase my useage of opiates.
If anybody has any insights or suggestions I would love to hear them. Like many others here this problem has turned my life upside down. The only good thing about this particular pain is that it seems to go dormant during sleep so I am able to keep it together during the day.
Bye for now.
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DaveFromSD
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I’m sorry to hear about your pain. I suffer from groin and right leg pain and haven’t had diagnosis yet. I move around on a wheelchair as walking is too painful. In a hope that I could speed things up, I’ve been reading recently a lot about nerve pain and vascular issues, as cannot get much help from doctors. I know that nerve blocks are used to treat nerve pain and will consider getting them done myself if nothing else works. First though, I’ll try other non-invasive options like e.g. a chiropractor, a osteopath and a physiotherapist. I’ve also read in this forum about trigger points therapy and IMS treatment (Intermuscular stimulation). I have started creating my own list of causes of groin pain with their identification’s methods. You can see my findings here docs.google.com/document/d/...
Ignore the colour coding It’s related to my symptoms…I’m still at a loss what’s wrong with me but maybe you find it useful?
Maybe consider a second opinion before doing the nerve blocks if you’re not sure about the diagnosis? What scans/tests have you had?
With regards to the constipation, I suffer from diverticulitis so constantly battle with this problem. Since the pain in the groin started, any bowel movement brings more pain. Unfortunately, one side effect of the pills I’m taking is constipation so I use Lactalose for it. It does the trick.
If you get the nerve blocks done please do let me know if they worked for you. Good luck!
Thanks for the reply. I can relate to your circumstances - I never actually got diverticulitis but have diverticulosis all over my colon along with a family history of bowel problems, which I had escaped up until now. Bowel movements sometimes make my symptoms ease up for a short while but usually make it worse. My constipation is really bad and the pain is much worse when it happens which is still a regular thing and the normal stuff like miralax and extra fiber also seem to aggravate the problem rather than help it. I am pretty much tied down to home until the afternoon while I wait for my bowels to move. 3 out of 4 times I can get away with a combination of stool softeners (docusate sodium), magnesium and mega doses of Vitamin C (which sort of purges the colon) but the last few days my colon has been on a painful lockdown so I have to move on to stimulant laxatives which I hate.
It is pretty clear that I am going to have to try anything I can and in whatever order it comes. I would love to be able to manage everything but the availability and the affordability of treatment is an obstacle. I did research on local physical therapists and none of them take my insurance or only treat women. May have to drive to LA (live in San Diego) if I want the other stuff you mentioned like trigger point therapy. When you have sitting pain long drives are torture and I have tried 6 different cushions.
I am hoping the nerve block will help for a while or that it at least point my future treatment in some clearer direction. My doctors currently are operating under my last diagnosis from the GE of pelvic floor dysfunction. Early treatment for PN and PFD are pretty much the same anyway. You probably already know that there are many overlapping possible diagnoses for exactly the same symptoms, but if the nerve block provides even just 1 hour of relief then pudendal nerve involvement is a given. I think if that fails then the recto/anal surgeon I am seeing now will move onto botox injections. It seems he has been doing some research since when I first saw him. He was talking about botox then and didn't even mention the nerve block.
I am learning new things about the pudendal nerve all the time. An irritated pudendal nerve can cause your heart to beat faster, and make you feel cold (when it's not). I experience both of these every day.
Will keep in touch as things move along. Bye for now.
I have a wonderful treatment that may be helpful for all of you with bowel issue. Coffee enemas! Or just enemas in general can be very helpful.I have PFD and have found this to be such a discovery. there are web site you can google as well as asking me for assistance. I would be glad to help with any questions you may have. Another bene with this treatment is the consistent removal of toxins that accumulate in your liver. You can do this daily as I do. It is something I would never give up. Life changing. Bags are important and found on amazon along with fair trade organic coffee. It may sound strange, but hell what isnt with PFD?
I am willing to give it a go but first let me tell you my experience with enemas.
Whenever I use an enema all I ever get out is a very small amount of stool, despite the fact that I wake up feeling like I have several days worth in my bowels. This would be the standard drugstore Fleet-type enema. Just inserting the enema (or anything else like a suppository) ends up causing the pain to just increase for up to 24 hours. In fact, I just used something new called a mini-enema which contains standard stool softener (docusate sodium) plus lidocaine. Got the same result, about 1/4 cup of soft stool and I haven't gone since 10 am 3 days ago and now it hurts more. I was having success with a combination of stool softeners, magnesium and mega vitamin c for 3 weeks but then it stopped working.
I am not sure my problem really is PFD. I was only diagnosed with that based on a pressure test that occurred 4 months after the prostate surgery. I might have developed PFD as a secondary problem from all the straining and use of stimulant laxatives I did during that time. I have never had a motility test so I guess I should call the GE back and schedule that.
I guess it's possible that the PFD came from an underlying problem with the pudendal nerve (PN led to PFD) - but I really don't know. Maybe a diagnostic nerve block would help determine that. Maybe trying and failing physical therapy would help determine it?
Still willing to give anything a try even if it means more pain for a while. Do you have to buy and enema set-up? What's the formula you use?
Okay. This is a long story but I hope it helps. I was diagnosed with pudendal neuralgia about 4 years ago. I have been hemming and hawing about an pudendal interstim. I had three doctors recommend it. But had some friends who didn't do so well. I have had extensive problems with bowel bladder sexual function and pain. I finally decided to give the trial a try. I cannot tell you the difference it has made. First let me say it's not perfect. But I have had at least 6 normal bowel movements since permanent implantation. Which was 2 weeks ago. My pain is down about 50%. My bladder is working better and I have not had to cath since implantation ether. The doctor attached the leads directly to the pudendal nerve. I still have bladder issues. I am not through the healing process yet and things could change. Just a preliminary report. For pre-testing I went through Botox injections which helpeday for a very short period. I also had pudendal blocks. They helped a whole lot for a very short period of time. In my opinion the trial is worth trying out if you've done everything else.
I have so many questions since I still am not positive I have PN.
I had NO pain at all until immediately after my prostate reduction surgery so I am not sure if I have a new problem. My symptoms changed from more like Chronic Pelvic Pain Syndrome to more like PN after the surgery. My urinary problems generally are much less than they were before surgery. The pain I had in the perineum is completely gone. In other words, I think the surgery caused the PN. It may be that my enlarged prostate was aggravating that branch of the pudendal nerve and it eased up after the reduction surgery.
1. Did you have episodes of urinary problems with constipation prior to being diagnosed with PN? I had 3 separated by 18 months each time. It was during the 3rd episode that I had the surgery.
2, Which kind of doctor ultimately referred you for the interstim?
3. How long did you get relief with the nerve block?
4. How was your PN diagnosed - which tests did you have?
5. Were you ever prescribed meds after your diagnosis?
I asked for testing prior to the nerve block and am waiting for a referral for an EMG. Did
It may be that you become irritated by the treatment, thats sad.
I use organic coffee and A enema bag I purchased at amazon made from silicone. Coconut oil for lubricant. It can flare me sometimes too, so I completely understand. Do you eat beets, they are so good for moving things along?
Thanks for the info. I think I may have found a simpler answer to the constipation. It was in my medicine cabinet for a year but I didn't think they would do anything - glycerine suppositories. They're cheap, ease to use and work almost instantaneously. Been using them for 3 days now. However, sometimes things will work for a few weeks and then stop working. If that happens I wlll definitely try the coffee enema.
Are there side effects? Youtube has these scary videos, along with positive ones about coffee enemas which caused me pause.
I don't really like beets. Do you blend them with anything? How much do you need to eat?
If you don't like them you can actually choose them or blend them up just to have a B a half apple carrot celery together juicing. Juicing is amazing it would be healthy for you too and helpful
Time to pull the blender out of the cabinet. I juiced before but probably over did it with the fiber, but that was when I was super-regular. I'll start off easy and see what happens. Sometimes too much fiber can make things worse for me - it's a real balancing act.
Just wondering if you were using stool softeners before the beets. Doctor told me to make sure my bowel movements are soft and I am kind of afraid to give them up. I had an anal manometry test which showed my sphincter was tightening when it should have been relaxing. Too much pushing equals more pain.
Yes I had issues with constipation. My urethra was damaged by a medical product, so I have a lot of urinary issues. 3 different Dr.'s highly suggested the interstim. My pain Dr., Urologist and OB/GYN. Nerve block relief was very short, about 4 hours. The analgesic worked well, the steroids didn't seem to help. I've been on narcotics for 7 years for this damage. I saw many gastro docs and was so frustrated, they gave me all kinds of pills and nothing worked. They didn't seem to believe me that my bowels would not work. I had tried everything. The interstim has especially helped with this problem. Big yay!! I pray you get the help you need.
That info helps allot and really appreciate it. Seems like everybody goes through many doctors. I am going to have to wait until October when I can sign up for the insurance that will help me pay for more advanced treatments but you have given me a direction to go. My urologist and gastro doctor have basically bailed on me and now I am seeing a rectal surgeon who seems more open minded but I have yet to make an appointment with a pain doctor. I too have been on narcotics for a long time (for arthritis) and would love to get off them.
No has mentioned interstim but I found out that it is in fact available at the medical center I am currently going to. But I think they may force me into physical therapy first which would just be another expense to find out what doesn't work. Oh well, that's reality. I can't take some of the non-narcotic meds used for treating neurological pain due to a common and otherwise harmless heart arrhythmia (pre-atrial contractions) so they can't even try that on me. And they can't force me into a meditation class because I am already meditating.
Too bad we have to be the ones who manage our own treatment plan but when an issue overlaps so many specialists I guess it's inevitable.
You never mentioned physical therapy so I was wondering if you had to try that as well?
Again, thanks for the good information. I am happy for your positive outcome. Stories with good endings are always a mood lifter.
Yes, I've been to very invasive physical therapy. It helps to a point and then I am stuck and can't get past that level. Then another surgery and setback. I know I will need it again when I'm healed enough from the interstim. It is crazy how we do have to figure out our own care. So complicated. PN is not an easy diagnosis. One of the main symptoms is not being able to sit without extreme pain. Also pain usually very low in the morning, doesn't wake you up and grows to be unbearable with movement.
If I didn't continue to have urinary symptoms I would sleep through the night. The surgery that caused my problem was supposed to alleviate the urinary urgency, so go figure. I just keep on giving money to a medical system that caused the problem. My knee arthritis is also due to a hospital oversight, they sent me home with an untreated broken knee based on one X-ray. 2 years later arthritis developed and an MRI showed it had been broken and now I need total knee replacement surgery. But walking makes the PN worse anyway so I'm not even thinking about getting that surgery.
The only place I feel comfortable at all is at home on a very elevated specialty cushion topped with pieces of memory foam that I cut out of a mattress topper. I have a smaller cushion for the car and going out but that's when I have to take the pain killers and I still can only stand it for an hour or so.
Did your physical therapists understand your condition or did they do things that made it worse?
One more question - were you diagnosed with PN as a result of the little bit of relief you got from the nerve block?
If so then I might go straight to that before physical therapy. I haven't actually been diagnosed with PN yet, just Pelvic Floor Dysfunction. It's my understanding that PFD is caused by PN but I'm not sure. I have also been diagnosed with Chronic Pelvic Pain Syndrome but it all seems to come down to the nerve.
My experience with most of the doctors I have seen is that they give you a diagnosis that doesn't really line up with your symptoms and then you get stuck with it for a while.`
Meditating doesn't change the pain but it does help with the anxiety which as you know makes the pain worse. Being confined to a recliner all day it's the only thing I can do for myself that helps at all. I hooked my computer up to the TV, along with a wireless keyboard, so I can do other things than just watching TV shows and the news.
Some good news: Just yesterday I found out that using an inexpensive glycerine suppository gave me a really good bowel movement. And it worked again today. In fact it came on almost immediately, not the 15 minutes to 1 hour that was on the box. This may be related to a very early symptom I had prior to surgery that all the doctors have completely ignored which was the loss of sensation of needing to have a bowel movement.
I feel like a beginner when it comes to PN and can't tell you how much discussing this with you has helped.
I am thankful that this is helping you. Think this is a very complicated situation. I believe that's why the doctors don't exactly know what to do. It is a relatively new field. PN can cause pelvic floor dysfunction. It isn't the only cause of PFD. There are certain doctors that do use the nerve block as the primary way to diagnose PN. From what I hear your symptoms sound like PN. I carry a pillow, a heating pad and a stool wherever I go. My PT told me later that the stool actually helped the pelvic floor relax. For some reason having your feet higher reduces the pain. She said it was because it put the pelvic floor into a relaxed position. I have been using the glycerin suppositories for a very long time now. The doctor told me they used to think you would get so used to them that you wouldn't be able to go without them. That has been debunked. There is no cause and effect there. So they are not dangerous to use. I am much better after the interstim, most of the time I don't need to use the suppository. Occasionally I do and it's like you said it takes less than 5 minutes. Sounds like you have more than one problem. The urinary tract issue is separate from the PN issue. I too am having urinary issues. So frustrating!! Surgery is a cause of PN. You may have had trauma to your pudendal nerve from that surgery. I lived in the recliner for many years, I know how frustrating it is. I am sorry that you are in pain and I hope you find someone who will help you. For some reason Insurance requires PT, various blocks and trigger point injections before they will allow you to do interstim surgery. They want to cover all the least invasive procedures first. I had to fight with my insurance company for this anyway. It is worth the trial, the trial is completely reversible. Mine was for 2 weeks. It was apparent immediately that this was helping me. I actually was able to fly home the day after surgery without crying on the plane from pain. Plane flights were very excruciating for me. Car rides were horrible. My pain would be a 9 after an hour in the car. Even though I was medicated it seems like I had nothing in my system. Medication worked for things like rinsing dishes and loading the dishwasher but that was about it. I never had full relief from pain except for first thing in the morning while laying in bed. It quickly went out of control once I got up. As I said this isn't perfect. Read all the medical things you can. Pudendal hope is a great website where you can ask a lot of questions also. I did my own research and know more about Anatomy than I ever cared to know. By learning as much as you can, you not only can inform the doctors better but you can protect yourself from the ones that are under-par. I hope you find the help you need
Sounds like your pain is much worse than mine. Having had the shingles, which I would classify as a 10, the pain I have from PN hovers between 5-8. I admire your ability to just live with it so long.
And I agree with you that I probably have 2 issues, which is another thing the doctors I have seen seem unwilling to consider. Right now they are uniformly of the opinion that the surgery just made a pre-existing problem worse, which doesn't make sense. I have never heard of someone with pain in the perineum have that pain go away after prostate laser surgery and have that go away and be replaced with worse pain in a different place.
I mentioned in my first post that the doctor who operated on me had only been a doctor for ONE month. He was also on the verge of getting married and didn't even have the time to visit me in recovery. He told me later, I assume after talking to other doctors, that he probably shouldn't have operated on me while I was having active urinary symptoms. I shouldn't have agreed to the surgery but was thinking irrationally since the urinary problems kept me form sleeping. Immediately after the GE finished my colonoscopy she said "You have PFD. Do you want me to schedule the bio-feedback?" I started to ask a question which she interrupted and curtly said "do you want it or not?" I came to learn that doctors are humans and often have no answer at all, along with being more rushed than ever with so many new people entering the healthcare system. I am also learning, as you pointed out, that finding the right doctor is very important. The first visit to a new doctor is more of an interview. You can tell pretty much right away how much or little they know and whether or not they are willing to let you guide the treatment.
As you know relief comes from doing many small things so if I have to do the physical therapy, nerve blocks and other injections first and they only help me 5% I would consider that a small victory. I think the thing that helps me allot is just appreciating all the good things in my life that I previously took for granted. My house is not as clean as I would like, but I have a roof over my head and was even able to purchase my own home at the bottom of the crash. I know of so many people who are having their rents raised by huge amounts and now they have to worry about where they are going to live. I have so much more compassion for others since this began, so in a way it's an unwelcome blessing.
Your experience with the stool is interesting. I noticed that effect even in my recliner. Since I am sitting so high with the cushions when it is in the upright position my legs dangle and the pain decreases. Now I'll start experimenting with that. I stopped playing the piano because proper playing posture requires a firm seat but the bench I have is height adjustable and maybe I just need to fiddle around with it.
I do allot of online research but then I will come to something that stops me cold. I read that the longer this problem goes untreated the more likely one is to develop permanent nerve damage. But I since I have only had this problem for one year and you were able to find some solution after many years that puts my mind at ease.
Since opiates don't help very much do you think that stopping them would be much of an issue? There's a part of me that just wants that instant relief, even if only for 30 minutes, but there's another part of me that says running away from the reality of my situation is only going to make it worse later on. Right now I take six 5mg Vicodin a day, sometimes all of them at the same time but usually split up in 2 doses. I have stopped before (for a week) and the problems aren't that bad, increased anxiety and fatigue. I don't drink, use marijuana or take anything else whether it's prescribed, over-the-counter or illegal.
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It’s related to my symptoms…I’m still at a loss what’s wrong with me but maybe you find it useful?
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