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View Full Version : Hurry up and wait! (Also, has anyone read A Headache in the Pelvis?)



Stephanie2004
12-15-2004, 01:21 PM
I ordered the IC Survival Guide and also A Headache in the Pelvis, the second mostly because I thought it sounded a lot like my brother's experience with pelvic pain. As I read the general description of IC symptoms, I didn't think it sounded all that much like my symptoms. When I got to the section on related conditions, the description of pelvic dysfunction described my pain exactly. So, I turned to the second book and read it also.

Two questions:
1) Are the authors saying that pelvic floor tension causes IC, or that it is often mistaken for IC? In other words, if my pain is pelvic floor pain, does that mean I probably don't have IC? I've been following the diet, and it's hard to tell whether it's helping or not.

2) This is partly question and partly venting. After two months of pain, the urologist said to take antibiotics and wait two more months, which I have now done. Today I saw my GP for an infected sweat gland (now I have to take another antibiotic for that), and mentioned that I was still in a lot of pain, that I thought it might be coming from muscle tension, and that I wasn't sure whether that would fall under the urologist's area or not. She thought a moment, then said to wait another two weeks and ask about it again when I come in to have my arm re-checked.

But - the IC Survival Guide says that pelvic floor dysfunction is most easily treated in people who've had symptoms for less than four months. I feel like the chance to treat the problem is passing by, and no one will do anything. My brother suffered with pelvic pain for six months, but during that time the doctors were giving him medication, including prozac and hytrin (which he said made all the difference in his case). Do I keep waiting as instructed, or try to insist on some action? (I'm having an especially bad pain day, which perhaps adds to my impatience.)

Stephanie2004
12-16-2004, 05:36 AM
This flare-up of pain follows on a couple of days when I decided to "test" whether the diet was working or not, by eating pizza for lunch and a couple of pieces of fudge. I didn't start feeling worse until after a day or two. If the pain is from pelvic tension, the flare-up could be from the extra-cold weather that just came through, or from anxiety about the doctor's appointment.

Who do I see about pelvic floor tension? My urologist or my family doctor (both of whom have already been pretty dismissive)? A gynocologist? A new urologist?

(I was hoping my GP would volunteer to prescribe a muscle relaxer, but no such luck. Since I'm self-paying, I need to keep expenses as low as possible.)

Indy
12-16-2004, 02:59 PM
I read the book and it has made me realize that I have IC and Pelvic Floor Dysfunction. All the IC meds do nothing to relax the pelvic floor but klonpin or valium make me feel much better.

I just started PT and was told I was clentching my pelvic muscles like grinding my teeth.

A vaginal e-stim unit also helps with this.

You need to find a physical therapist who specializes in pelvic pain and get your doctor to write a RX. You'll learn more from the PT than the doctor.

Katrina
12-16-2004, 03:20 PM
I believe that something would have to cause PFD in a person (for them to have it)....for many of us IC contributed to that...and for a lot of us we end up with both...IC and PFD....your pain may end up being more on the PFD. That doesn't mean you don't have IC....but you should look into treating PFD too! Indy's advise sounds very good. IC and PFD often are connected. I know that PFD is a big problem for me now but things began with IC.

I hope you feel better soon. I often advise everyone to do things that help keep our Pevic Floor relaxed even if they don't have PFD because it could be a problem in the future if you don't.

:grouphug:

Sarojini
12-17-2004, 02:35 AM
The others are right, IC and PFD are often connected... I have both too. In my case, my doc thinks the IC caused the PFD because I got in the habit of clenching everything up down there due to urgency (trying to hold in urine) and because of pain (the body goes into a protective "guarding" response when an organ is in pain, and the muscles around it tense up).

Physical therapy has definitely helped the PFD part, but I still have true bladder pain sometimes. I think you should get a referral to a pelvic physical therapist (not all PT's do pelvic rehab, so perhaps asking your urologist will be the best way to go). The therapist can then test you for PFD and do stretches, biofeedback, E-stim, and all kinds of things to help you out. Mine even prescribed a TENS unit for me to use at home to help me relax those muscles. It really does make a difference....

PenguinK
12-17-2004, 02:46 AM
I also have PFD with IC. My doctor recommended Botox Injections in the pelvic floor. She also added that she had the procedure done herself. This is very reassuring, having a Urogyn. that has symptoms like your own. She's great!
The only problem is getting your Insurance to cover it. Mine needs to be Precertified with a call from the doctor. I'm still waiting for it to go through.

Good luck,
KK