Health Organization for Pudendal Education

Hi all, I'm also new to the forum and hoping to get some advice.

My story started 9 months ago, when I had pain in the right testicle that kept getting worse, accompanied by pain while urinating and a higher urinary frequency. I went to see a doctor which prescribed me antibiotics for 2 weeks, which initially seemed to provide some relief, but after a week the pain returned. During the next 3 months I saw 3 different urologists, and only the last one had a diagnosis: chronic pelvic pain syndrome. During that time I also started having referred pain in my right leg and foot (had a lower back MRI, came back okay), and some weeks later hip/buttock pain.

The urologist referred me to a pelvic floor PT for pelvic floor relaxation, and after some sessions the tension in my pelvic floor muscles was quite okay according to her. The testicle pain improved and is almost gone, but my other symptoms (pain while urinating, burning sensation in the penis and perineum) stayed the same. Because I was still having the leg and foot pain, and buttock pain, she advised me to see an orthopedician, who diagnosed me with femoro-acetabular impingement (FAI) and possible piriformis syndrome. He sent me to a regular PT, where the piriformis syndrome was confirmed. In the first session they did dry needling on the piriformis which seemed to improve all my symptoms, but now after some more sessions all my urological symptoms are back and maybe even worse then before. The pain in my foot is gone, but I still feel that the muscles in my buttock are very tight. I went back to the urologist already, but he told me that he isn't specialized in pelvic pain and can't do anything more for me than pelvic floor PT. He also doesn't know anyone in the area that could help me further.

I now have a difficult time connecting the dots, and I don't know where to go next and what I should have investigated next. Is this chronic pelvic pain syndrome the same as pudendal neuralgia? I have read several things about piriformis syndrome and labral tears/FAI on this forum already, but is it possible that all three issues (Pelvic pain, priformis, FAI) are connected? And could the piriformis syndrome be the primary cause of my issues? . I'm only 25 years old, and after all these months I'm starting to lose hope that I will ever get better. I also find it very annoying that all doctors i have seen so far do not see the bigger picture and only look at their specialization.

Hello Jack,

Welcome to the forum. I'm sorry you are struggling with a bunch of nasty symptoms right now. There is a very good chance you will get better with the right treatments so please don't lose hope. Do you have any idea what might have triggered your pain? Sometimes there can be several triggers which makes it tricky to figure out the primary cause of the problem.

Jack123 wrote:I now have a difficult time connecting the dots, and I don't know where to go next and what I should have investigated next. Is this chronic pelvic pain syndrome the same as pudendal neuralgia? I have read several things about piriformis syndrome and labral tears/FAI on this forum already, but is it possible that all three issues (Pelvic pain, priformis, FAI) are connected? And could the piriformis syndrome be the primary cause of my issues? . I'm only 25 years old, and after all these months I'm starting to lose hope that I will ever get better. I also find it very annoying that all doctors i have seen so far do not see the bigger picture and only look at their specialization.

I think it is very possible all of your issues are related, especially if they are all on the same side. I had some of the same symptoms and they were all related. Chronic pelvic pain syndrome is literally chronic pelvic pain but it can be caused by many different things. Pudendal neuralgia is a more specific diagnosis and can be one of the possible causes of chronic pelvic pain. But even that diagnosis doesn't tell you what is causing the pudendal neuralgia. PN can have many different causes as listed at the following link: http://www.pudendalhope.info/node/9 To illustrate, I can tell you what happened in my case. I was weightlifting and developed perineal pain, urinary frequency and some other symptoms. Slowly over time more and more muscles went into spasm, including the piriformis muscle and I developed piriformis syndrome, including symptoms in my foot. I also had pelvic misalignment and sacroiliac joint dysfunction (SIJD) from chronically strained pelvic ligaments due to the weightlifting. So, I had a diagnosis of PN but the cause of it was the SIJD and strained ligaments causing an impingement on the PN.

I can't say for sure what would be the best place for you to turn next. It would depend partly on your history and how all of this started because that can sometimes give you a clue as to what the cause is. Also, did they do any imaging to confirm you have FAI impingement and how severe it is? Since PT was not successful it seems like it would be a good idea to go back to the ortho and find out what they would recommend next. If there is some underlying musculoskeletal issue that is causing the piriformis syndrome, all of the PT/dry needling in the world might not fix it permanently unless the underlying problem is fixed. If the underlying problem is the FAI, maybe that needs to be dealt with. I don't know what type of PT you had exactly but hopefully they assessed you for some of these underlying issues -- such as SIJD, pelvic misalignment, etc.

Another question is whether the pelvic floor physical therapist detected any pain along the course of the pudendal nerve when examining you via the rectum. If the nerve was tender at the ischial spine or at Alcock's canal that would suggest that the pudendal nerve is irritated. The pudendal nerve innervates the skin of the scrotum, the penis, and the urinary sphincter. So since you have symptoms in those areas you have to be a Sherlock Holmes to determine what is irritating that nerve. If the nerve at the ischial spine is very tender, that could indicate an impingement on the nerve by the ligaments that cross at the ischial spine. Whether it is due to the FAI or something else is something you will have to figure out. I know it's not easy to figure these things out but you are young and you have a good chance for healing. It may take you a little bit of time to get this sorted out and you may have to put your life on hold temporarily which is extremely difficult I am sure. Is your family being very supportive?
Please keep fighting because you could have a great life ahead of you if you do.

Violet

Thank you for the reply Violet, I already feel a little better this weekend.

i have no idea what triggered my pain, it suddenly started out of nowhere. The orthopedician took X-ray images as confirmation, and i have both the PINCER and CAM abonrmalities, but he didn't tell me how severe it exactly is. He sent me to PT first, and told me to come back after a few weeks, then the next step would be either a diagnostic infiltration in the hip joint, or an MRI arthrogram, I don't know what might be the best to do first. The pelvic floor therapist asked me if I had any pain during the rectal exam, but I don't remember that anything was especially painful then; so I think this is another indication that irritation of the nerve might be more at the place of the piriformis.

The PT didn't do a really thorough examination, I do have a slight leg length discrepancy and wear orthotic soles for flat feet; she also pushed on my SIJ, but i did not feel pain there, I also never had back pain. At the moment I'm really starting to think that everything might be related to the hip; when my hip (and piriformis) feel better, my pelvic pain symptoms are better as well (and vice versa). I stopped doing the hip muscle strengthening exercices at the PT last week, and feel better already; I think I might have been a bit too enthousiastic with the exercices and overloaded the piriformis muscle again. However, I also regularly have short stabbing pains in the groin, limited motion of the hip, and general pain around the hip (front, back, side); so I think it's not the piriformis alone and the FAI might really be the cause of my issues. I hope that this is the case, as these are issues that can be treated, although it will probably take a lot of time.

My girlfriend understands that I have pain, and is very supportive; I did not tell a lot to the rest of my family yet, so they think I'm fine for the moment. I asked the PT to do the dry needling again next week, and will also make a new appointment with the orthopedician; and then discuss what I now think, and evaluate the further options. I hope I can go on holiday relatively painfree in a few weeks.

Jack sorry to hear of your symptoms, i know the pain is hard to tackle. All the best for the appointment. Hope things will change for better...