CPPS & relationships

[yogi76]

Hi,

I'm 28 yrs old and have had chronic prostatitis / chronic pelvic pain syndrome for about 10 years. I have this theory that my diet strongly affects my CPPS. So I'm extremely conscious of my diet (no wheat/milk) and I also have a high level of anxiety. I find it hard to explain my diet to my friends,family. To me its a very personal subject and even my family doesnt understand it. They think its all in my head.

How do you deal with talking about your condition to your GF/fiancee? Can some of the married people explain how your spouse reacts to this? I've had my URO suggesting me to get married to bring my anxiety levels down and I tend to agree with him, but I somehow feel that the women I meet may not be able to understand a lifestyle of coping with chronic pain, dietary modifications. This has resulted in a socially withdrawn lonely life for me, feeding into a vicious cycle of depression and isolation.

Could you guys comment on how you cope with relationships and the isolation that comes with CPPS?

Thanks.
Yogi.

[sto876]

Women are very paranoid especially when you tell them you have pain in that area. The best advice is to try to hide is as much as possible
and hopefully you can find someone and then tell them the truth.

If you find a girl and you tell them everything and then ask them to go out with you 99.9% she will say no.


You can either get busy living or get busy dying. Its about survival.
Don't stay in your hole and expect things to happen.

Take some pain meds and live life. I know many people are against it but would you rather live your life in a hole alone or take some pain meds with some side effects and life happily?

This is just my opinion, and how I live

Good luck

[CppsDad]

My wife has always been very supportive. Right now, we are in a "dry spell" because of my pain, and she is hanging in there. I'm hopeful that this will end soon, but I know that she will be with me through thick and thin and we will get through it together. I don't know how I would have survived without her support.

There are few women out there for each of us who would be that loyal anyway, whether it be about money, love, or sex. So, the woman who is right for you is going to stick by you no matter what. If she doesn't (after you tell her), she probably was going to be a waste of time anyway.

However, depending on the severity of your symptoms, the last poster's advice is probably accurate. Hold on to the information for a little while, but not so long that the woman feels lied to. Any woman who cares about you will take the news just fine. This applies to ANYTHING that we don't like about ourselves, whether it be bad body odor, a messy apartment, etc... Just don't over dramatize things either. If you remember that this is a condition with a solution, not a disease, there is no reason to make things sound overly pessimistic when you talk about it; THAT will turn some people off. In general, our group needs to try hard not to feel sorry for itself and move on with recovery. That type of self-deprecating behavior will turn people away.

My wife (I asked her about this part) suggested that many women are more worried about having children than having sex. If they want children, and you cannot have sex at all, then that could be a big hurdle for them. Let them know you aren't sterile (I assume you aren't). And if you CAN have sex, but can only do so infrequently, then they should know that too. But don't let them worry that they'll never have children; be honest up front and get that bad possibility out of their minds.

You don't mention what you are doing for therapy. Ten years is a long time to have the condition. Since this is your first post, why don't you "introduce" yourself and tell us what steps you are taking to help yourself?

As far as anxiety goes, I don't know if spouses reduce anxiety (I know toddlers don't), but if your anxiety is surrounded around whether the significant other will accept you and help you regarding CPPS, then I'm sure marrying would reduce it. In all honesty, I think family life gives me things to focus on other than my condition. My daughter gets me through times of pain more than any medication can. She gives me motivation to heal and get better too.

Personally, I think anxiety (I've had some severe bouts the past year) is more detrimental to my daily functioning with others than chronic prostatitis / chronic pelvic pain syndrome is most of the time. When I have an anxiety attack, I can't do ANYTHING; I can't go anywhere, I can't see anyone, etc... This is worse than taking a lot of pain killers and fighting through it (I can do that, although it's not preferable).

Lastly, you don't mention whether you've ever HAD to explain this to other women. Has your socially withdrawn life completely kept you away from having to explain this?

We're here to help.

Mike

[yogi76]

Hi Mike,

Thanks for your nice reply. Here's an introduction about my chronic prostatitis / chronic pelvic pain syndrome condition. I started feeling that I needed to go to the bathroom too many times during my freshman year in college and this would keep me up all night. My college years were horrible because of my frequent urination, pain, fatigue etc.. The general physicians who I met all ruled away any problem and just told me I had a incontinent bladder. Despite all this I did well in my studies. In one way, this condition led me to become bookish and lonely and hence I concentrated whatever energy I had on my studies.

I went to grad school and the condition worsened. Thats when the Uro told me its abacterial prostatitis. I was put on Cipro for about 2 months and some muscle relaxants. I figured out by then that food is causing some irritation and switched to a bland diet. I then moved to the Bayarea for work and kept trying to find a solution for this. I visited more Uros who just couldnt find any bacteria and termed it abacterial prostatitis but was given more sulpha drugs, Cipro. I was also on pain meds for about 3 months but I had all the bad side effects. I then met Dr. Wise and started doing some of his relaxation tapes and had some intra pelvic trigger point therapy. The therapy did help but my pain would come and go.

With all my meds, I started having acidity etc.. and on a tangential note I started looking for solution for my acidity and hit upon a nutrition book which talked about yeast syndrome and I scored pretty high on that. I then went on an anti yeast diet (GFCF) diet and that solved a variety of my problems. For the first time in life I felt clearer in my thinking, no haziness, no headaches and irritability etc.. Even though my pain kinda mellowed down, I would get it back if I eat some irritant foods like vinegar etc.. and also exercises with weights would bring it back.

I moved out of bayarea recently and couldnt control my diet here and my family is all against my whole diet and they dont even recognize my condition. They seem to think that at such an young age I can't have any medical problems. I'm desperate to get some more PT and I know if I do Dr. Wise's tapes it would help a great deal but I get into this depression and dont do anything about my condition. Moreover I seem to have symptoms of chronic fatigue, sleeplessness. I assume its common for most of us in this group.

I keep switching between periods of depression and normalcy, I'm extremely self conscious about doing anything that'll trigger my pain. This has led me to some sort of obsessiveness about my condition and I can't stop thinking of how I've gotten this condition and I even contemplated switching to do some medicine degree to find a cure for this. I'm a software engineer by profession and I work long hours and this prolonged sitting worsens my problem.

I'm actually a very jovial guy and can make friends easily but I am generally not able to spend more time with them when I want to, simply because I suffer from pain during those times. I can't seem to feel happy and being with people who are happy when I'm in pain, makes me feel irritated. Hence I stay by myself and get into this cycle of loneliness.

I guess mentally, I am just waiting for some miracle cure and one day become pain free for life. I know that's not realistic and I have to be patient about this. So when I'm looking for a girl friend I tend to look for a person who will understand all this. I guess talking about chronic prostatitis / chronic pelvic pain syndrome could scare them especially when many of the docs can't even understand it.

Anyways, I'm grateful that we have a forum to support each other here.

Thanks.

[CppsDad]

Thanks for posting some more complete information. We're all here to help, and knowing your problems allows us to get to know you better, but I also think it helps you open up and use us too. This web site has been a big source of support for me since I found it 3 months ago, and I know it has helped many others who just need people to talk to that have the same problems as they do.

Here are my thoughts from some of the things you said:

1. FIND A PT in your area! Try http://www.pelvicpain.org/findmd.asp. I think there are other resources for pelvic pain specialists, and they are growing all the time. If there isn't one in your area, find a myofascial release specialist (that shouldn't be hard either), and find one that is willing to learn to do some internal work. Since you've probalby had internal work done previously, you'll be able to guide them somewhat and know if they are doing things correctly or not.

2. You are fighting for survival here. If your family can't support you and let you do what you need to do - you need to take some steps without them. They are idiots if they can't understand your problem and what you need to do. Of course, make sure you've explained your issues in full depth to them; if they don't understand the whole picture, you aren't giving them a fair shake.

3. " guess talking about chronic prostatitis / chronic pelvic pain syndrome could scare them especially when many of the docs can't even understand it.
I reiterate this point again; the reason we are all scared about this condition is because we have been misinformed and neglected for too long. But it's time to treat this as a problem that will be gone in a year or two. I dont' think anyone would be scared off of a guy who is doing physical therapy recovering from a condition that will be mostly better in a year. That mindset will help you start the therapy again and stick to it. Until you are ready to commit to it full time for a long period of time, you won't make the progress you've made. Just read the Success Stories Forum to see some of the information that is out there. And once you start recovering, even a little, your whole attitude will change (it HAS to change or you will be stuck here). Women will be turned off of a guy who has resigned to pelvic pain forever and is therefore unhappy to be around. But they WON'T be turned off of a guy who is doing healthy things and is working hard to recover from an injury to muscles in his pelvic region and has a good attitude about the future.

4. I guess mentally, I am just waiting for some miracle cure and one day become pain free for life. I know that's not realistic and I have to be patient about this. So when I'm looking for a girl friend I tend to look for a person who will understand all this. Obviously, there is no miracle cure - but you CAN become pain free again. When you say "understand all this", I assume you mean understand the worst that this condition has to offer and the rough prognosis. But as I stated above, this is the wrong thing for them or YOU to understand.

I'm a software engineer to, and so I know it can be tough sitting all day and even some of the stresses that come with it. But I installed a standing shelf, and I walk a lot too during the day, and I have a laptop I can use lying down. There are things you can do.

Mike

[yogi76]

Hi Mike,

Thanks for your encouraging words. It really helps. Unfortunately I live in Bangalore,India now and the PT website you pointed out doesnt have anyone registered there. I havent even ventured to find one here but I'll try. I've been doing some Yoga of late and that helps a bit. Do you feel if you do weights you get the pain back? I like working out with weights but I keep yo-yoing since I feel fatigue, pain after that. I just have to work on the anxiety front, donno where to start on that. I was even contemplating talking to a shrink since I dont have anyone else to talk to in person about what I'm going through.

Thanks,
Yogi.

[CppsDad]

Yogi,

Yes, exercise and weights exacerbated my symptoms by putting the tender muscles into spasm. (See this post here: viewtopic.php?t=2357) That was when I finally got serious and contacted Dr. Wise. I love to play tennis and walk, but when I could no longer do that without causing pain, then I was in real trouble. My muscles were not able to handle the stress of the exercises I was doing. The fact that exercise exacerbates your symptoms is a good sign that your muscles are the source of your problems (exercise probably wouldn't trigger pain from calcifications or infections).

For me, a rigorous schedule of stretching (yoga stretches and some ones I made up myself) in the pelvic floor has been a big help. I do it as often as I can.

My anxiety was partially tied up in my chronic prostatitis / chronic pelvic pain syndrome symptoms. The better my chronic prostatitis / chronic pelvic pain syndrome symptoms are, the better my anxiety. So just starting treatment was a big bonus for me. It used to be that my pain trigger a lot of anxiety, but now that I understand how chronic prostatitis / chronic pelvic pain syndrome generally works, I don't get so anxious from flare ups any more (I get somewhat anxious, but not driven to panic attacks like I was 9 months ago). However, the reverse is not true. Anxiety triggers severe chronic prostatitis / chronic pelvic pain syndrome problems for me, so it was key that I stamped that out. I have a prescription for Xanax when I feel that the anxiety is causing tension in the pelvic region that I can't unlock. And I also took some stress and anxiety classes at my health care provider that helped me look at things differently in my life. In your case, talking to ANYONE would help. The key is to understand that you can't stop stress and stressful events from a happening. But you can control your RESPONSES to it. A psychologist would probably help you as you suggest.

I'm sure you can find some physical therapist there to help you. My wife does internal work on my occassionally, and this is approved by Dr. Wise. Therefore, anyone you find that is willing to do it for you CAN LEARN. But your best bet is probably with a myofascial release specialist, since they understand trigger points already.

[londoner]

I disagree! If, say, the prostate was infected then surely heavy exercise that put the infected organ under physical stress would surely irritate it and worsen the condition. If your toe was infected and you went running you'd expect the infection to get worse - and when it did you wouldn't put it down to a muscular problem. I'm not saying that infection is the problem but I don't believe that the fact that exercise exacerbates the problem is proof that it's not an infection.

[CppsDad]

That's true. If something is hurting or inflamed already, tensing the muscles around it and putting direct pressure on it can certainly cause pain. I was probably generalizing a little much there.