New Here- My Intro

[withoutsound]

     I'm 36 years old and was diagnosed with Fibromyalgia in 1997, but felt the onset of CPP in the summer of 2008. I would say I was lucky that I was able to find A Headache In The Pelvis rather quickly and attended Dr. Wise's clinic within a year. All without being put on many drugs or suffering through multiple doctors visits. Yet, just when I started to feel better I woke up one morning with a bad pain in my neck. This was likely the onset of TMJ although I didn't know it at the time. What followed over the next few months was a severe worsening of my Fibromyalgia.  I felt pretty much every muscle in my body weaken and trigger points popped up everywhere. I'm already quite skinny and I lost 10-12 lbs. of muscle mass in just 3 months. 
     Before my Fibromyalgia worsened, the CPP felt localized in my thighs, pelvis, and abdomen. In fact, while trigger points are a big part of Fibromyalgia, I didn't really understand what a trigger point was until getting CPP. I didn't know how good I had it, how mild my case of Fibromyalgia was.
    Although I learned the tools to manage my pelvic pain years ago, I still don't put them into use as much as I should. I was told that 'everything is connected' and while I hope and want to believe CPP is separate from my Fibromyalgia and can improve, I fear muscle tissue in my abdomen and pelvis is not likely to become supple without working on the rest of my body too.
     I know no two cases are the same and this board is dedicated to chronic prostatitis / chronic pelvic pain syndrome but I wanted to mention Fibromyalgia in case there is someone who has a similar experience and perhaps has lessened their CPP symptoms. Anyway, that is the short version. Thanks for reading. ;)

[webslave]

Interesting. I can attest that I find I have trigger points in my jaw and really bad ones in my shoulders, especially my right shoulder and trapezius.

It may well be that having a predisposition to trigger points makes you more susceptible to CPPS, CFS and Fibro.

[withoutsound]

Have you ever been diagnosed with TMJ? Interesting how I often hear Dr. Wise describe TMJ as being in the same family so to speak as CPPS. I find both conditions very similar as well.
I think with trigger points in my pelvis and then my jaw, neck, and shoulders (after the onset of what most certainly is TMJ), it is no wonder the supple, functional muscle tissue in between my neck and pelvis also developed trigger points as well. I'm sure having Fibro, and perhaps somewhat weak muscles didn't help either.

[withoutsound]

I'm seeing a new Urologist this week and am wondering what to say. I've been diagnosed for years and while there may be a few things I haven't tried, no gluten diet for example, more than anything I need physical therapy. How do I tell the doctor I already know what is wrong and know what I need without insulting his breadth of so called knowledge?

Btw, there is a physical therapist in my city who doesn't even need a doctor referral but I am currently uninsured and unemployed so that is not an option. The new doctor I am seeing is at the hospital where I receive free medical care, so I'm limited to the services offered at that hospital. It could be there are no physical therapists at the hospital so I may be out of luck even if he believes physical therapy can help. Any thoughts, advice would be appreciated. Thanks!

[webslave]

Unlikely a hospital is without a PT. Point him to the research on the topic:

http://www.ncbi.nlm.nih.gov/pubmed?term ... d%20pelvic

[withoutsound]

Thanks webslave. Those are helpful links!

[sufferinginpain]

What city are you in?

Have you tried to take any other meds, like Elavil or Hytrin? There is a new med out called Rapaflo - which i am on now, it's an alternative to Hytrin (Terazosin)

[withoutsound]

I'm in Cincinnati Ohio. I don't know of Rapaflo. I took Elavil years ago for Fibromyalgia but don't really remember what it did to me. I'm not opposed to trying something new, but unfortunately I am very sensitive to drugs the past few years. Does the Rapaflo help you?

[sufferinginpain]

Its either the rapaflo or Elavil, but it helps a lot. At the end of the day I would have so much pressure in my rectum it was unbearable.. at least now I have days I go without pressure until 8pm. Even then its a dull ache, but it helps for me. They have a free/cheap trial for it. Its an expensive drug, but for the first 6 prescriptions its $10.. give it a whirl, it's a little milder than Hytrin (terazosin)

[withoutsound]

I read a little about Rapaflo and the description of orgasms quite scared me. As far as I see it, anything that makes my orgasms even less enjoyable is not worth any said benefit. I have no idea if it would cause that side effect, but given my hyper sensitivities to drugs it's highly likely.

Went to the new Urologist today. It was more of the same, of putting me on antibiotics. No PT at the hospital. He mentioned possibly giving me a cystoscopy and also said my pee hole (sorry I forgot the medical term he used..started with an m?) was small. Thus causing possible back up during ejaculation? I really felt he was stretching there. Perhaps I will mention Elavil when I return in a few weeks.

The feeling of sitting in front of two doctors (a grad student was there as well) and knowing more about what is wrong with me than they do just never gets easier. Thankfully it didn't cost me anything but time.

[withoutsound]

Forgive me if these topics have been covered on this board someplace else already. I had not one but two doctors feel my prostate today. I wonder if inserting your finger into multiple rectums each day, you might find a correlation between tight rectums and those who complain of chronic pelvic pain? Sorry if I'm stretching here but I read somewhere on this forum that a urologist told a patient his pelvic floor was extremely tight. I've never been told that...even though it is awfully tight. I wonder how that is determined.

Also, can anyone tell me if there is any point in getting a cystoscopy? I really felt the doctor was just thinking of tests he could run to rule other things out. Honestly though I don't see the need in having a procedure when it isn't warranted.

[webslave]

He mentioned possibly giving me a cystoscopy and also said my pee hole (sorry I forgot the medical term he used..started with an m?) was small. Thus causing possible back up during ejaculation? I really felt he was stretching there.

"Meatus".

The feeling of sitting in front of two doctors (a grad student was there as well) and knowing more about what is wrong with me than they do just never gets easier.

Get through the uro phase and move on to something that actually helps.

a urologist told a patient his pelvic floor was extremely tight. I've never been told that...even though it is awfully tight. I wonder how that is determined.

Not many uros will tell a patient that. It depends on a number of factors. How recently was the uro trained? Does he keep up with the literature? Does he have an interest in non-surgical conditions? etc

Also, can anyone tell me if there is any point in getting a cystoscopy?

Useful for detecting strictures.

[withoutsound]

Meatus! Yes, that was it. Thanks for your replies. This is the first urologist I've seen in my city so I guess I needed to have one here. Yet, I've been through all of this years ago so I didn't have high hopes, but I'm still no closer to getting physical therapy.

[withoutsound]

2 other unrelated questions I forgot to ask the urologist.
1) I sometimes notice lumps on the bottom of both my testicles, a little smaller than the size of the pea. Sometimes I feel like they show up when my pelvis is especially tight or during masturbation. Other times it seems there is no pattern. I want to be clear that they are not always there. Any thoughts?

2) I no longer drink alcohol but years before my onset of CCP I remember feeling a warm tingling sensation in my rectum and/or perineum while drinking. I never narrowed it down to specific types of alcohol. A friend of mine was taking some drug after kidney surgery and said he felt a similar feeling. Any idea?

[webslave]

1. Sounds like epididymal cysts, but have any lump in testicles checked out in case it's cancer (especially at your age, since it's the most common cancer in males aged 20–39 years);
2. Not related to CP/CPPS; most likely neurological (I get a "weak" feeling in my legs if I drink even a small amount of alcohol).