Suffering Alone

[spencerryan1]

Hi There,

My name is Ryan and I'm a 33 year old who has been suffering with Chronic Prostatitis, Chronic Pelvic Pain Syndrome or whatever it is for the past 13 years since I was 20. When I was 17 I started getting discomfort and pain in my perineum region after ejaculation. It went away after about 20 minutes. Then one day I went to bathroom and after I finished I started to get this pain in my urethra that was pulsating. I thought I tore something. After that I was put on antibiotics, which did not work, and had a clean cystoscope and MRI of the pelvis. From that point on I had pain in the perineum between 6 through a 10 on the pain scale constantly everyday with no breaks. I have tried Flomax, cymbalta, Elavil, neurontin, prescription NSAIDs to name a few. I have tried physical therapy but have not had much success, maybe it was the therapist, I don't know. I developed IBS as well. These last 13 years have been very difficult and lonely as I have bounced from urologist to urologist and have tried a variety of things to get things under control. So far I have found very little relief from the pain which is there consistently. I have read about doctors such as Dr Wise and Dr. Shoskes but I live in New Jersey and have not been able to get to them. I have seen Dr. Moldwin in New York, but getting appointments with him is almost impossible, and him and most urologists seem very disinterested in helping me get to the bottom of this illness. Recently my dad was diagnosed with stage 4 prostate cancer and it was devastating and scared me as well. I started thinking when do I need a new cystoscope or MRI? Will I die from prostate cancer to but much younger? At the same time my wife and I gave birth to our first child. I don't want her to have to see her father suffering all time and miserable. The one thing I kept asking doctors was who else has this problem so young. Is there someone else out there? No doctor could put me in touch with a person or live support group. So I am very glad I found this. Does anyone have any suggestions on trying to decrease the pain? Good uros in New York? or frankly any advice at all. I really would love to finally get my life together and live better.

Sincerely,
Ryan

[webslave]

You haven't got prostate cancer. Contact Marilyn Freedman
http://www.essentialphysicaltherapy.com ... aff_01.htm

[elitynski]

Ryan - I want you to know that even though you feel like you are suffering alone, there is a lot of support on this board. There is a light at the end of the dark tunnel.

I was curious what your experience with Dr. Moldwin was like? He's very in touch with CPPS and it sounds like you might not have gotten what you needed.

It's not unusual to try and get urologists to fix this problem -however most of them are not in touch with this issue.

I saw a wonderful physical therapist in Chicago and had a great experience. Here in California, not so much.

Be encouraged and don't give up. There are many success stories here and many former posters have left because they got better.

We are all pulling for you.

[spencerryan1]

Thank you both for writing me. My experiences with Dr. Moldwin have not been terrible. He is a very nice guy. I am suppose to go to him to get possible trigger shot injections in late September. Not sure whether that will help or not but will see. He is just a very busy guy with limited time and very hard to get any type of follow up appointment. Very hard to build a partnership with him to get to the bottom of this problem. While he has experience treating people with CPPS he still doesn't have a clue what it is and why I am in chronic pain. Thank you for your encouragement. I am trying my best to get through this not just for me but for my wife and my little daughter. It has been thirteen years on this painful journey, I really hope I can figure out a way to make the next thirteen less painful.

[Wolfcub]

Hello spencerryan1, I was touched by your story. Unfortunately, I live outside U.S. so I don't have any concrete advice to give you such as referring to a specific therapist or so. As webslave suggested, your condition is likely to involve the pelvic floor muscles, so visiting an expert dealing with this issue (deep internal pelvic floor therapy) might help you.

You mentioned you had family with a little child. I hope and believe you have the strength to raise him fairly well in a loving and supporting environment.

You are not alone, CPPS/Cat.III affects many people in their 20s and 30s. I've also been dealing with this since I was 19 years old (today I'm 27), and things somehow got a little better since then (especially this year, you can find my story on this forum too).

Regarding drug therapy, have you been taking them long enough? since for most people it might take some time (more than 3-4 weeks) to notice their effect (or trying a different dose), in many cases a better than just a placebo effect (for me, alfuzosin moderatle helped, but it took more than 5 months so see its optimal effect).

Take care, and keep in contact whenever you feel like. We'd like to be hearing from you.

[spencerryan1]

Thanks for your response. I have not tried alfuzosin I will look into it. Its really nice talking to someone in my age range dealing with the same issues. I'm typically in pain all the time at varying levels. My muscle all over also ache all time, I know its realted to this pelvic pain condition.

[Wolfcub]

Well, muscle relaxants and alpha blockers might help you... but one should be patient and maybe trial and error to some degree. A multimodal approach is also considered nowadays for our types of condition...

[walla71]

Spencerryan1, I went through a lot of the same things. I live in New Jersey also and visited all the doctors I've heard about on this forum but they couldn't do anything for me except giving me tinnitus from putting me on a month of Cipro. I visited Marilyn Freedman who webslave recommends, twice. It's expensive, and I hated the drive to Long Island, but after 2 sessions, I was "cured." I say "cured" because I tried a lot of things around this time and I still have a minor bout here and there but nowhere near what I used to. I actually just visited the forum for the first time in a year so I never really think about it anymore. In addition to Freedman, I was on a vitamin regimen -- no idea if these did anything, fish oil recommended to me by a urologist in Englewood who was a good guy but had no idea how to help. I also went on antidepressants. Good luck.

[walla71]

Actually looking at my records, I went to Freedman 3 times, then saw major improvement.

[jcacciat]

Walla71, what areas did Freedman help you with? Was it internal, external, or both, and what muscles in particular did she treat? Did she give you an effective home program? And how far apart were the appointments? I am thinking about flying into NYC to see her and am trying to gather some intelligence. Thank you.

[spencerryan1]

Sometimes I wish I had some of the break throughs as others on this site. I have been struggling with CPPS for 15 years. I'm 35 now and I just wish I could at least find something to just help. I would wish this terrible affliction on no one. It still today amazes me that no one can help me and I'm just in so much pain. Wish we actually knew what CPPS was. Struggling

[MajorSky1]

Anxiety makes it much worse, I think, and may even perpetuate it.

[CMT23]

Hey Spencer. I can certainly relate to the idea of struggling alone - and from a young age. I am 36 now. My symptoms started when I was 17. Right at the moment of ejaculation, it was like a switch flipped and I knew something wasn't right. It went away a couple months later and then came back after a 4-8 week reprieve and has not gone away since. Once you rule out all the stuff that regular Urologists look for, I would definitely look into the internal trigger point / anxiety factor. There is a well known one in Chicago - Rhonda Kotarinos. The upside of David Wise in California is they give you a wand that you can use to treat yourself after the clinic is over.

As for some relief NOW, have you tried things like Valium, Clonazepam, and Tramadol? Tramadol doesn't agree with me anymore, but used to use it pretty successfully. Clonazepam lets me sleep all night when its flaring up and Valium I can take 2.5mg to 5mg in the day time if I get really uncomfortable. They are not drugs you want to take every day because of addiction potential and I try to limit it to 3-4 times a week. At the same time, what's more important, getting some relief or perhaps becoming dependent on a medication? Hot baths combined with the above drugs can also really give relief.

[spencerryan1]

Thanks for all your input guys, I appreciate it. It's a terrible struggle everyday. Right now I'm doing biofeedback at Weill Cornell so will see.

[spencerryan1]

Just finished 6 sessions of biofeedback at Weill Cornell/ New York Presbyterian. Unfortunately I got very little relieve from much of it although the anal probe stimulation did sometimes desensitize the area and lower my pain level for and hour sometimes two. Of course it would flare right back up. It's very frustrating. Looking at other options too? Has any one had any success with nerve blocks? I am also looking to take a trip to see Dr. Daniel Shoskes. Anyone see him? Thanks so much for your time. I wish these devastating syndromes or whatever we have were given more thought and time by doctors.