The struggle is real

[ChaseJordan92]

Hello Everyone,

My name is Chase and I am 32 years old. I started feeling pain in my pelvic area behind my testicles and ranging to the left and right sides of my inner upper thigh/hips and lower abdomen. The day the pain started I was on a long distance bike ride and I felt a sharp pain going down the left side of my pelvis into my testicles. The pain went away after a few minutes and then it never came back. 3 weeks later I was on another bike ride and I felt the pain come on again, this time it never left and it was really concentrated in my testicles and all around the pelvic area for a few weeks. I finally decided to make an appointment with my doctor. I ended up going through four different doctor visits who every time did a testicular check and they couldn't find anything. Finally, after about 6 weeks, the geniuses decided to refer me to a urolgist in San Diego at the Scripps Clinic in La Jolla. I spent about 5 minutes with the doctor and he did a prostate check and immediately said I have prostatitis. He put me on antibiotics for 4 months which made me loopy and the pain never went away. After they took me off of the antibiotics the doctor said he wanted to do an ultrasound, so he did an ultrasound and he said that my prostate did look a little large. He continued with his diagnosis of chronic non-bacterial prostatitis. This doctor did not seem like he really cared that much, and when I would ask him questions he would become visibly frustrated and lost, this was in June of 2014. I ended up selling my bike because I was told that I cannot ride anymore unless I want the pain to continue. I love working out. I run, swim, weight lift, play sports, etc... The pain rarely went away but I was able to manage it for the remainder of 2014 through about April of 2015. When I went back to see the urologist he changed his diagnosis after I told him what my symptoms were (same as before ) and he said I have interstitial cystitis. At this point I'm kind of confused because he was very certain that I have prostatitis. 2015 was full of about 30 different doctors visits where I was getting bladder injections (fun) via catheters. All this did was make matters worse. Finally after several months the pain kinda died down and I had a decent summer. July and part of August I was almost symptom-free other then when I sat down. In August of 2015 I remember the day that I had my worst flare up yet. I lifted leg weights at the gym and then that night I had a burrito with about six hot sauces. The next day I was in excruciating pain. The pain is kind of like the worst toothache you have ever had but in your pelvis area. The Pain did not go away for months! It was there when I was standing, sitting, lying down on my stomach or my back, it was always there! After a while I started feeling like the urology office was kind of lost in my diagnosis, and through all the research that I've done I kind of realized they diagnose people with whatever they think the symptoms could be but really there's no straight diagnosis or cure so it's all a ruling out process. In December of 2015 my flare up finally went away. I have felt completely awesome. 10 days ago my symptoms came back and it's the same old thing again. It's like a bad toothache in the left side of my pelvis and testicles. The pain has always been manageable, but what's not, is that it is there 24 hours a day. I have a stand up desk at work but I actually kind of feel better when I sit down. I started physical therapy in November of 2015 and my physical therapist was the one who mentioned the pudendal nerve when she was treating me. She asked me to buy a therawand and start doing treatments internally by myself at home. Well, two weeks ago when I was doing treatments around the time the flare up started again, I was up in the left-hand corner of my pelvis area with the wand at about 3 o'clock and I hit something and it caused a sharp/dull/burning pain that is very similar to the kind of pain I have been feeling except I isolated it. I feel like I was really able to target where the pain is coming from. Sometimes it comes from the right side but this time it's really coming from the left. I started doing a ton of research on where that pain is coming from and it seems like the pudendal nerve or close to it. Over the last several days I've been researching the pudendal nerve and I found a ton of information regarding it. I have an appointment with Dr. Jordan in Santa Monica in March who specializes in pudendal neuralgia. I still haven't come across anyone who symptoms are exactly like mine. It seems like most people feel this in their penis or vagina or in their anal area, with me it's just kind of like a toothache behind everything but its not really causing anything to not work. Things that make the pain go away include: sex, working out, jacuzzi, bathtub and stretching. When I stop doing these things the pain comes right back. Does this kind of sound like anyone else's story? I feel extremely bad for those that have been suffering 5, 10, 15 and 20 years with this before they were able to get a diagnosis. I am grateful that I'm moving on to see someone that could help me. I will be extremely grateful for any and all responses, thank you for reading.

Chase

[bowhunt]

Chase:
Sorry you are here! I couldn't help but respond as I see 26 others have read your post without saying a thing? Isn't that what this forum is for? I've been told more people use Facebook as the contact area, so I'm just passing that on to you. My pain is mainly while I sit. It "buries the needle" when I sit down. I have no problem laying down, and I'm as my best in the morning. (FYI: my post on Medical MJ is right under yours). Its sounds like you've been "used and abused by Dr's" ... Its great you've had a couple days with no flare up! Anyway...just couldn't not respond to you. This pain we are dealing with is brutal, and wishing you the best.
Bowhunt

[ChaseJordan92]

Bowhunt,

Thank you so much for responding, I'm glad somebody finally did. One question I did have is if this could actually be some kind of soft muscle tissue damage or possibly a ligament tear somewhere. Either way it sucks. Another thing that I did not mention is that I am celebrating 10 years sober next month. Seems like all these doctors want to do is shove some type of narcotic down my throat but all I I'm willing to do for the pain is Tylenol and Advil. Is there any other medication that could help with the pain that is not a narcotic? This is assuming I do in fact have pudendal neuralgia, thankfully I will find out within the next month. It seems like because it's early still in my suffering, I might have a chance to beat this thing. I usually have a flare up for about two to three months, and then I'm pain free anywhere from 1 to 3 weeks. Sound familiar?

Thank you,
Chase

[nyt]

There are many medications that are used for pain that are non-narcotic. These medications fall into 4 main categories: 1) tricyclic antidepressants, 2) Serotonin-norepinephrine reuptake inhibitors (SNRIs), 3) Selective serotonin reuptake inhibitor (SSRIs) and 4) seizure medications. Usually, the first ones they try you on are amitriptyline, gabapentin (Neurotin) or pregabalin (Lyrica). Unfortunately, it is really trial and error to figure out which one works for you, the dose that works for you and which side effects you can tolerate.

Has anyone looked at the possibility of adductor muscle or tendon tears? Any thoughts about a hernia? Has anyone discussed the genitofemoral nerve?

That is great you were able to find the specific spot that reproduces your pain. This will be a great help on your next doctors visit.

Good luck with your doctors appointment and hopefully they will be able to give you some answers.

[bowhunt]

Chase:
I first tried Duloxetine (I had bad side effects, took 14 days), then Gabapentin (took a 22 days, dried out my mouth an lips so bad I couldn't sleep), then go trial samples of Lyrica 50mg, took 2 per day, ran out then my GP gave me a prescription for the same trial. Don't really know if there working or not? So apparently not much! Waiting until I March 3rd for a phone consult with Dr Conway in NH...If he thinks he can help, I'll be getting on a plane for NH.
Good luck with appointment.
Bowhunt

[Violet M]

Chase, sorry you've had to go through so many physicians without any resolution.

You might want to ask your PT do a rectal exam and press on the ischial spine to see if that is where your pain is. The way I was diagnosed was when my PT pressed on the pudendal nerve at the ischial spine and that elicited the worst pain. The pudendal neuralgia physician did the same thing and was able to reproduce the pain immediately. My pain was primarily on the right side at about 9 o'clock (opposite of 3 o'clock). The area along alcock's canal was also tender.

I was a weightlifter. When I initially started having pain it sort of came and went, felt like a toothache deep inside the pelvis, was mostly on one side, and was worst at night when lying down. For over a year, I didn't have pain during exercise, sex, activities, etc., but when the pain finally became constant and acute, I figured out that I typically had a delay in pain flare-ups of several hours after certain activities, as is common with people with pudendal neuralgia. All of this developed slowly over a year and a half. Eventually the toothache-like pain at the ischial spine turned into knife-like pain and sitting became difficult.

Based on my own experience, if your pelvic floor muscles are tense and overly contracted, mysfascial release (with the wand or finger or whatever) should help relieve your symptoms temporarily, but if you have an irritated pudendal nerve, doing myofascial release in the area of the nerve (at the ischial spine or along alcock's canal) will likely flare-up your symptoms. The flare-up may occur several hours later or the next day.

Good luck seeing Dr. Jordan.

Violet

[ChaseJordan92]

I am so excited and thankful for the responses on my blog. I have not had any MRIs yet and I'm hoping that when I do they can tell some kind of story about where my pain is coming from. Does anybody know what type of MRIs I should be receiving? After researching the genitofemoral nerve it seems like this could definitely be the problem. Violet, you mentioned that eventually the pain came on and never disappeared. Did it seem worse when you're under a lot of stress or anxiety? I have chronic panic disorder and chronic anxiety disorder and so I feel like these issues are making the pain worse. When I am completely relaxed and having a good time and not thinking about stuff but just enjoying the moment it seems like the pain is not there. They are going to put me on an SRRI. Does anyone have any recommendations of what types I should take? Violet did you ever get the nerve block injections? I have been doing physical therapy, but I am hesitant to ask the physical therapist to touch the nerve because I don't want to irritate it anymore if that is what's causing the pain. I think I will wait till my appointment on March 14th with dr. Jordan to see if he will do an examination and touch the nerve. Is there a specific diet that I should stick to with this type of problem? Because of the prostatitis and interstitial cystitis diagnosis I stopped eating foods there were spicy. Is it the same with these nervous years?

Thank you, Chase

[Violet M]

Chase, my pain wasn't at all caused by stress or anxiety but that's not to say that the symptoms didn't cause stress or anxiety. If you think your symptoms are caused by stress or anxiety, you might want to read Ezer's posts about the mindbody approach.

Yes, I got nerve blocks but they didn't provide any permanent relief. The genitofemoral nerve is pretty strightforward as far as nerve blocks go. I don't know if Dr. Jordan does those as well as PN blocks.

Diet made no difference for me. Can't say for sure which SSRI would work best for you. I used lexapro, an ssri, but a lot of people seem to get relief of bladder symptoms with some of the tricyclic antidepressants such as elavil.

Violet

[ChaseJordan92]

Violet - Was the PGAD related to the PNE? What type of PNE surgery did you have? How long did you have PNE before surgery was suggested? How did your PNE diagnosis take place? When I stretch a certain way I can kind of simulateducation the pain going down the inner left side of my leg. It ranges from 1 to 3 a clock and goes into my left testicle (sort of). Can you feel the pudendal nerve with a stretch? What about the genitofemoral nerve?

Thank you ☺

[ChaseJordan92]

Violet are you in the U.S.? I reviewed that Dr. Bautrant is over seas. What made you decide to go with him over domestic Doctor's? Have you heard anything about Dr. Jordan in california? Is he good?