Help

[Mlsc]

Im not sure what i have but ill write in detail what my experience has been so far up to this point and i hope someone can tell me what it is pne, pn or otherwise, thank you. Well where do i start with this embarrassing condition that i been living for now for a couple of years and it felt like it just came out of no where. Im 24yrs and i swear ive had time where i wanted to kill myself for having this condition thats giving me a hard time urinating and feeling like im constipated all the time its really uncomfortable and not to mention depressing specially when people dont understand this condition thats just puts a stop to your life . I try not thinking about it but i cant i think about all the time everyday its making my life a living hell. To be more detail my penis and testicle are forever soft and when i want to get an erection i have to keep, its even embarrassing writing about but i have to keep touching my penis just to get an erection. Also when i use the restroom and go #2 and ive been holding for a while that when i feel life a escruitiating pain between my testicle and anus its painful like a knife stabbing like pain when i get to the toilet and begin to push. This condition has literally tooken over my life from getting a girlfriend to going on trips with my family and just my life period. I feel like why me im really tired of this condition taking a hold of my life and i cant help but think of my future and how this is gonna play a bad role in it. There are so many effects i have because of this condition that i feel has ruined my life. I would really like to hear back from someone and maybe even get a diagnosis to see what can be done because im sick of not living my life. Thank you and God Bless

[Ctrl-Alt-Delicious]

First I just want to say I'm so sorry to hear you are having such a hard time. I do know the frustration of trying to figure out a name to put to the monster that is seemingly ruining your life. I am also pretty young, and we have this idea that things like this can't happen to us.

I recently found out that it is my Sacroiliac Joint at the eye of the storm, but it has caused multiple other muscle/tendon/soft tissue injuries in the entire pelvic region. I have bladder dysfunction due to this, as well as pelvic floor dysfunction. Basically, as the pain/spasms/injury went on I sometimes loose the ability to hold a bowel movement, it hurts often when I go, I leak urine, and always feel like I have to pee. Sex is pretty well impossible right now too. These issues are embarrassing sometimes, but not uncommon for all kinds of reasons. We are all human, and just because it isn't talked about often doesn't mean that you should feel embarrassed. We all have the parts, and the functions. I've gotten to the point that I don't even think twice talking about it with doctors or my pelvic physiotherapist. I am also just sorting out everything, it has been almost two years and I feel like I finally have a small glimpse of what is going on. I know I'm still at the beginning.

My advice is to bug your doctors, speak up that something is wrong, and keep looking until you've got a better idea of what is causing this. I would hunt for a physiotherapist that specializes in the pelvis and pelvic floor. I just found out they exist and mine has already made the biggest difference for me in figuring out what is going on. Yours sounds a lot like SI problems too, but there are so many possibilities that only working with Dr's will you figure it out.

Try to remember to get support from anywhere you can, friends, family, counsellors, even on this site and others. It is a tough road, but you are not alone, I am here in the same boat as you, as many others are too.

Be kind to yourself, and try have patience with your body. Hang in there You are stronger than you think!

[Hidden in reply to Ctrl-Alt-Delicious]

Hi, could I ask which country are you living in and what specialist ( s ) or what investigations you have had for you to suspect these symptoms are due to pudendal nerve entrapment or pudendal neuralgia. If we knew this we could help make some suggestions. Do you remember any incident that could have started these symptoms. Like a fall. injury, or did you cycle a lot?

[Cardinal in reply to Hidden]

CVBN, you may want to post this as a reply to the original poster instead of to the person who replied. I'm not sure the original poster will see your message.

[Hidden in reply to Cardinal]

Thanks for letting me know. I have re-sent to MIsc.

[kamals]

I know how you feel. You are not alone. I am 40 and my symptoms are identical to yours with the exception of the erection. I have no problems getting erections but sex and ejaculation is painful and like you there have been times when I have prayed to God for death. I have a young family, a loving wife and two beautiful children 8 and 5 and that's what keeps me going. You have to stay positive and keep searching. My mom always says that ailments come quickly but take a time to go away and I firmly believe I one day be okay. I hope and pray for everyone who is suffering that God gives us the strength to cope with this until God takes this ailment away. Rely on your family and friends for support. Find a good pelvic floor physio therapist try mediation and yoga and distract yourself. Try to change your lifestyle and diet so you are not constipated. Try to take things day by day. Slowly, the symptoms wilk go and one day you will be okay. I will pray for you and for all of us. We will not let this dictate how we live our lives. God bless.

[Hidden]

Hi could I ask what country are you living in and what specialist (s) or what investigations you have had for you to suspect these symptoms are due to pudendal nerve entrapment or pudendal neuralgia if we knew this we could help make some suggestions. Do you remember any incident that could have started these symptoms like a fall, injury or did you cycle a lot?

[Desperateforrelief]

Hello, I know this is embarrassing. TMI as they say. I'm so over TMI. I've been going through this for 8 years. I am a female so can relate to a portion of what you're talking about. All 3 areas of pudendal nerve were hit. I had bowel issues and severe pain with going - stabbing, etc. My bladder didn't work correctly, and very painful too. And sex is extremely painful. I had the pudendal interstim and it has helped so much for the bowel movements, no pain now and working better (not perfect), before this I was self cathing frequently and now I am not cathing at all, so bladder is better, bladder pain is better (not perfect), don't know about sex as of yet because it is too soon to try. Hopefully that is better too. This is a really horrific problem and most people do not understand it. The difference between pudendal neuralgia and pudendal nerve entrapment is neuralgia is damage to the nerve, while entrapment is compression on the nerve 24/7 from swelling, scar tissue, etc. With pudendal neuralgia relief is present in the mornings and it does not wake you from sleep. An entrapped nerve is a different ballgame, with the same symptoms only relief is not available. I hope this helps some. Pudendal Hope is a great website for information also. Hang in there. This is very complicated and I simplified it, I am not a doctor. Best Wishes to recovery!

[Hidden]

I've had penile and pelvic issues for over 6 years now. I totally understand the way you're feeling, the deep depression, the constant worry and thinking about it, concern for the future etc.

Did this just start out-of-the-blue? Was there anything you could think of that might have started it?

Have you had your prostate checked? Or treatment for any prostate problems?

Any tests or scans?

My advice is to keep as mobile as you can. Take gentle exercise as mush as possible. Find some stretches or massage techniques that seem to help. I find the best way to stretch is to use things like a chair, or a mat on the floor, or a tree to lean against. You'll need to experiment to find what works.

Don't give up - things can improve, I've found.