IC related? Please HELP!

[serendipity]

So I am still not diagnosed with IC. Went to a pelvic pain specialist in NYC as per my urologist and this new doctor does not believe I have IC. He said its pelvic irritation/nerve related (PFD). He did an examination and when he touched certain spots the pain was unbearable (pelvic muscle triggers). YET...the pain I feel on an every day basis does not feel like that nor do I feel it in the areas I did during the exam. I asked him if he pressed on the bladder during the internal exam and he said he did and I had no reaction. This totally confused me cause THAT is where I feel the pain (pubic bone area) during sex. I told him when my urologist did the exam I felt pain. So again...confused. He says its not the bladder CAUSING pain but rather my pelvis that is causing the bladder hurt. I strongly disagreed with him and told him I was afraid I had IC and wanted to be tested cause its been 4 months now and I can't take this anymore.

He put me on a muscle relaxor (which I much admit is making me feel a little better) and wants me to go for physical therapy. He said he or my urologist can do the PST test for IC but he didn't think I had it. He is also sending me for a colonoscopy cause alot of my pain is on the left side and I have developed alot of flatulence and abdominal pain along with gurgling (gas pocket bubbles in chest and stomache). Would I feel bladder pain here?

I also have alot of lower back pain (mostly on the right). My left sided pain throbs alot. I can't tell what triggers it. Sometimes I think its food related. Other times I can eat fine all day and still get the pain/throbs.

Speaking of food...how do I know if I am food sensitive. The past few days I have eaten alot of food I shouldn't have (if I have IC). I had chocolate, pasta with sause, nachoes, onion soup. a glass of wine and a bottle of beer, just to name a few. I didn't feel much worse. Just typical level of pain I have since this all started. If I do have IC and was reacting to food...would I be in alot more pain? How do you know if you are reacting to food? I didn't get any urgency or freqeuncy increase with those foods. Should I if I am reacting/flaring?

Plus..my pain always feels like menstrual cramps. Not low near the bladder but higher up (like at the navel or in the abs). The left sided pain is throbs/heat and the back pain is just a dull ache (sometimes heat).

So I am still confused as to what is going on and if I am on the right track with treatments. I want to have the PST test to rule out IC completely but they don't see it necessary at this point in time. The pelvic pain specialist told me to give the therapy and muscle relaxer a month and if no better...he would do the PST.

HELP!

[Claredale]

It seems like we all have gone to doctors like this. I had freq/urg more than pain when my symptoms started several years ago, so I went to another doctor that knew about IC, he did the PST test, which was positive (I had no idea what they were doing at the time) and scheduled me for my first csyto which showed that I in fact had IC. Some people aren't as diet sensitive, but on your list you said pasta and sauce, so I am assuming tomato sauce. I would be in a lot of pain with that. I can't do citrus at all.

I am glad that the muscle relaxers are working for you. I take Soma at night only now for my pain.

[serendipity]

Yes Tracey. It was pasta with marina sauce wiht meatballs and sausage. When I do get pain (and I don't know if its related to food or not) its the left side and the stomach/menstrual ache pain in the abs or navel area. The only time I have BLADDER pain is during sex or when I get urgency (which isn't everyday and mostly feels like urethra area).

I am seeing Dr. David Kaufman in NYC. Very well known in the IC field and on this site as well as ichelp.org. He says if I do have IC it is mild but that he didn't see OBVIOUS signs of IC in me. He is an expert so part of me wants to believe him but part of me thinks he is wrong. But again, he is the expert, right? This pelvic pain specialist I am seeing works together with Dr. Kaufman to treat patients with pelvic pain (IC or whatever may be causing it). Together they said they would get me on the right track. I so want to believe that. I am still hoping I don't have IC. But I find it odd that I seem to have so many symptoms of it plus the fact my colon seems to be acting up and I read that IBS and IC can go hand in hand sometimes.





It seems like we all have gone to doctors like this. I had freq/urg more than pain when my symptoms started several years ago, so I went to another doctor that knew about IC, he did the PST test, which was positive (I had no idea what they were doing at the time) and scheduled me for my first csyto which showed that I in fact had IC. Some people aren't as diet sensitive, but on your list you said pasta and sauce, so I am assuming tomato sauce. I would be in a lot of pain with that. I can't do citrus at all.

I am glad that the muscle relaxers are working for you. I take Soma at night only now for my pain.

[ICNDonna]

I think I would probably go for the potassium sensitivity test now. It could still be that you need physical therapy, but if you have IC, it needs to be treated as well.

Donna

[dverba]

Wow! I know how it feels when you seem to be the only one concerned about your pain. These doctors do not go to bed at night worried about your pain level or how your doing. Maybe start keeping a journal of everything that you do and eat everyday. See if a pattern does not develope. Are you on anything for depression? Sounds like you may need something during this time. I am new to this but when I eat or drink something I know within 15-30 min. if it is gonna hurt me. I took (1) sip of a soda this morning and I am hurting now, bad.
Hope you get some answers soon!
DeAnna

[SharonA]

I didn't feel much worse. Just typical level of pain I have since this all started. If I do have IC and was reacting to food...would I be in alot more pain?

Have you been eating like that all along? If that is the case, then you just might be reacting to food. The only way of knowing what foods/drinks could be causing pain is to eliminate them from your diet for a while and let your bladder calm down.

I am not very diet sensitive, but I do have problems with too much caffeine and citrus anything. I learned that I had to be careful of these things by reading the IC Diet and experimenting with different things.

It is a good idea to have the test done so you know for sure if you have IC. I am hoping that you do not. :)

[Yogajo37]

Hey there!
I am so sorry to hear about your frustrations! But I do understand! I was lucky and got diagnosed with IC before my PFD. I believe though that the PFD is much more the issue for me than the IC. I am diet sensitive but since I went off the BC pill my bladdeer has been quiet. Yet sex can still be painful near my bladder. I have all those trigger point areas you talked about as well and have pains that sometimes even radiate up my chest. I have been to PT but hafound a great holistic body worker and we have worked on re aligning my hips and pelvis as well as working the knots out of my psoas and upper hamsting (on my back). I do a lot of yoga to try to stay open. When things get really painful (which usually means tight for me) I will take motrin, zanaflex and inserta vaginal valumn suppsitory. Together they do the trick. Oh and hot baths. I take a good book and hang out for 20 minutes at a time. Sometimes if I have the sense of tighness/pain and I want to have some intamacy with my fiance' I take a bath first to get warm so the muscles are less rigid.

The one thing that I do think you might want to try is to assume that for now you do have IC with the PFD. Try the diet and use some preleif. It takes time to calm the fire of a flair. (it took me at least a month to detox my body from all the acid stuff and 2 years to understand what I can and cannot eat) Maybe this way you will have a sense of control over your body. This way any work you do at PT will be helpful. If you go into it angry and scared (which is so normal) your fight or flight reactation which causes our natural acids to get out of control and muscle tension to increase. Neither of which help either IC or PFD! All the while you can still work with your docs and get a final diagnosis.

Remember to breathe! Please feel freeto PM me if you need to chat!

Joelle

[cgirard]

serendipity, based on your doctor's assessment it's pretty much certain that you have PFD. Do you have IC? It's all a matter of definition. The current definition of IC/PBS is based on symptoms of urinary urgency/frequency/pain, and not the results of any particular lab test.

Dr. Jerome Weiss has had very high success rates for treating the pelvic floor muscles in IC patients. Will your IC be cured by pelvic floor therapy? There's no way to know at this point. But I'd be very surprised if physical therapy doesn't give you noticeable relief.

Check out this interview with Dr. Weiss:
http://www.ic-network.com/guestlectures/weiss.html