Sever testicle pain

[Joe house]

I have si joint dysfunction and pelvic floor dysfunction and a herniated l5. But now for the last year I have been trying to find out why I get horrible pain in my left testicle, adductor , pubic bone , and it travels to my hip butt area. I have seen three urologist and the testicle is fine. I have seen many other doctors and all say they never heard of my problems. I have been in PT for my SI joints for a year and in PT for my pelvic floor for four months. I have seen some improvement at times mostly from the internal therapy for my pelvic floor but I still can't make any real difference with the testicle pain. The pain can range from a 7 to 10. I have passed out from the pain and can not move at all when it is full blown for up to 11 hours. I have been stuck in my car for 7 hour and I try to make it to my bed where I have taken 20 minutes just to lay down with help from girlfriend even had to use a rope one time to pull my self on to my bed because I could not move my left leg with out it feeling like it was being torn from my body. I can trigger this pain by walking on uneven surface. I can trigger it by laying on my left side or laying on my back with to much pressure on my left butt. I can trigger it by sitting in a chair to soft or to hard and the only way I can drive is if I recline the back of my car seat to about 55 degrees. I have to put a pillow behind my head to see over my steering wheel. And even then I can not lean on my left butt cheek. My inguinal ligament get extremely painful as well. My si joint area will hurt and my IT band and inner thigh get very sore as well. I'm getting no help from my doctors and it's been only my research that has gotten to where I think it could be pudendel nerve. Has anyone heard of this extreme stabing sharp pain that comes and goes with these triggers. I am severely depressed and have no idea what kind of doctor to see anymore. I've seen three urologist, nirologist, physiatrist,primary DO , chiropractor, and five different physical therapist, rheumatologist and I have had MRI nothing . I have not done EMG yet or pudendel nerve block because I had a reaction to lidocaine that's my story would appreciate any help it would be great to hear from someone who has insight about what I should do next or at least confirm I'm not the only one that is going through this my doctors sure act like it

[Violet M]

Hi Joe,

No, you are not the only one who has experienced these types of symptoms. I have heard similar stories on this forum before but whether it's pudendal neuralgia or not I can't say for sure. Do you have any idea what triggered your symptoms in the first place?

I'm guessing at least one of your 5 PT's must have been knowledgeable about pudendal neuralgia. If not, then maybe it's time to see either a physician or PT who specializes in PN to rule out PN/PNE.

Have you spoken with any anesthesiologists, interventional radiologists, or pain docs about alternative medications to lidocaine in nerve blocks?

Violet

[Joe house]

Hello Violet
Thanks for the reply its good to know other have had this same issue. The first time this pain was triggered was when I squatted down to check the air in my tier. When I stood up it slowly came on. A lot of times if I'm sitting down and then stand up it can be delayed and hit me a few minutes after I stand. I can't always tell when I'm sitting that it's getting triggered. And sometimes it can take 30 minutes before it goes into a full blown flare up where I can't move. So when I first feel the pain I don't know which way it could go. The best I can do is lay down on my right side with a pillow between my legs and pray it does not get worse. My anxiety is horrible because it can happen anytime when I'm out and about. I hope to hear from someone who can share what they did about it. My physical therapists are not to up on pudendel pain. I have been educating them on the relationship between Si joint and the pudendel nerve. They can not understand why my pain is triggered when I go out of alignment when I believe it to be the ligiment being stretched that are attached to the pelvic that compress the pudendel nerve. Thats my guess from what I have read. I'm switching therapist to hopefully find a person who knows how to cure this. I also am going to get tested for other option for lidocaine in about a month. You mentioned some doctors I have not thought of so I will look into that. I would like to know if anyone else has experience pudendel pain to this extreme that you can't move. I can't move my leg an inch because my adductor, inguinal ligiment and groin get that painful not to mention leg, pubic bone and butt. I guess I'm asking how painful does pudendel pain get for other people the extreme of what I'm going through has my health care provider confused. Thanks again for your response

[janetm2]

Hi Joe,
Nerve pain definitely be unpredictable and painful. My best help with the shooting sudden pain going from sitting to standing has been my PT that is PN-aware (please see the list off the home page for someone near you). PT can take some sessions for results and in the meantime there is ice to use and I have Tramadol and oxycodone. I understand the anxiety as I scared a few folks at work when the pain hit. They already knew I had this problem but seeing it brings real understanding. Luckily I retired this year. I do have to say PT could not help when I had PNE but has helped since surgery and now just PN. You are correct being out alignment sets the flares off. Prior to surgery neurontin helped and post surgery I took Lyrica that helped. Also I had shooting nerve pain in my toes that has stopped with the daily Amitriptylene. I hope you can find a PT to sort this out for you and/or some other help to calm things down.
Janet

[Violet M]

Joe, you are not the first person to post on the pudendal forums about passing out from pain. I'm sure that's only a small consolation to hear that though. One of my friends used to get hit by severe attacks of shooting pain. If alignment is a major problem for you, you might want to find a manual therapist who uses the Hesch method. You could check with Jerry Hesch to find out if he knows a therapist in your area. His contact info is at this link: http://www.pudendalhope.info/node/63#NV

If ligaments are an issue for you, maybe prolotherapy would be helpful. I had several prolotherapy treatments that were helpful in stabilizing my pelvis. One of the physicians who gave me prolotherapy at the SI joint mixed a tiny bit of steroid in with it so the insurance would pay for it. You don't really want the steroids because you don't want to stop the inflammation caused by the prolo but if paying for the injections is an issue, this is something to consider.

Violet

[Joe house]

Hello Violet and Jane
Thank you both for your response. I'm currently taking tramadol and Valium but not much of either. I have had problems taking pain medication to hard on my stomach and other side effect doctor had me go to ER. I don't go anywhere with out ice. My ligaments are a problem I'm hyper mobile on my left si joint and the right si locks up all the time can be very difficult to get it mobile. I wish I had the money for the prolo therapy I can see what my doctor thinks about your suggestion. I wish they guarantee the shots would work I would borrow the money. I will look into that PT I have never heard of it before. It would be great to be able to sit down again and not feel like I'm walking through a mine field when walk in a parking lot. Getting stable I think will help a lot if I can get there. Thanks again !

[Joe house]

UPDATE
I want to up date my story in hopes that it will help someone else.

It turns out that my pudendal pain was being caused by Si joint issue, pelvic floor issue and muscle imbalance in my pelvic; these where the triggers. However, the reason for the extreme pain was caused by an infection in my rectum that tunneled its way to my perineum which caused an abscess. It was not until the abscess showed it self did the doctor or I know I had the infection because up to that point I blamed the pain on all my other problems. I had to have surgery to resolve the infection and everything is slowly getting better. I still get some pudendal pain but not like before and the more therapy I receive on my pelvic floor (internal therapy ) and iliac psoas muscles imbalance I have found relief. I hope sometime in the future I can completely beat this. I am wearing underwear again first time in a very long time and every other part of my life has improved. The surgeon said that the infection would have not caused the pain I was in but the inflammation from the infection could have affected it. All I can say is with in the two week of starting the antibiotics I was a different person but had the surgery because it was the only way to keep it from coming back. For along time I was beside myself was even looking into assisted livening at one point, but now I can move forward. Don't give up

[janetm2]

Hi Joe,
So glad to hear you are doing well and looking forward to the future!
Janet