Ready to curl up and die

[carol5555]

I am so thoroughly disgusted today. Its been a month since seeing Dr Whitore for my cystoscopy, 2 months since seeing Dr Goldstein for botox into my PC muscles.

Well the burning urination was minimal until I decided to take advantage of the lovely weather we here in the East are experiencing today. I walked 3.5 miles and am suffering dearly for it now.

Ok, so this is what I do not understand. Dr Whitmore said I do have lesions in my bladder. Dr Goldstein referred me to Dr Whitmore and they both suggested Elmiron and Dr Whitmore I think wants to do instillations. I have to see her for a follow up appt to discuss the results of my biopsy/cystosocpy.

So in the meantime, I contacted Rhonda Katorinos one of the more infamous pts for pelvic issues. She has told me that she works with urologists that do not even do cystoscopies or prescribe Elmiron because they feel that IC is more of a muscle disorder and today after walking with the exasperation of my symptoms, I am beginning to feel she is absolutely correct.

Also, stumbling across this article sickened me as I am popping my elmiron and waiting to begin the instillations that I feel Dr Whitmore will inevitably recommed -http://www.citeulike.org/user/chrismeta/article/796322.

Can't believe that simply walking an hour today would bring back both the burning urination and the intense vulvar pain. Does this not sound more like pelvic floor dysunction rather than IC. Why would exercising cause bladder pain, if your muscles aren't really the true culprit :cussing:

Any feedback would be greatly appreciated as I do not know whether at this point to pursue a "traditional" IC treatment plan ie the elmiron, the instillations, or just nix that whole thing and try to see one of the more prominent pts like Rhonda - I have done pt in the past - 4 different pts- of course none were well known and Im not sure how knowledgeable they were but in any event it did not work which lead me to these doctors who diagnosed IC and felt the reason pt didn't work was due to the bladder being the problem. Ugh, this is so completely frustrating, thanks for letting me vent!!!!!!!!!!:cussing:

[ICNDonna]

If you have lesions in your bladder, it does sound like interstitial cystitis. And yes, walking as much as you did could cause bladder pain --- especially if you didn't work up to it. It's possible to have PFD in addition to IC --- I suggest you talk with Dr. Whitmore about this. Many ICers do have both and pursue both the medical and PT routes.

Donna

[carol5555]

apparently the link I posted did not come thru so I will copy and paste it here, but it says women without IC have lesions in the bladder- this is so darn frustrating
Abstract
PURPOSE: We test the hypothesis that women without chronic pelvic pain or irritative voiding symptoms do not demonstrate petechial hemorrhages known as glomerulations that are characteristic of patients with interstitial cystitis. MATERIALS AND METHODS: A prospective cohort design was used for examination with cystoscopy and bladder distention of 20 asymptomatic women undergoing tubal ligation. Cystoscopy with the patient under general anesthesia was performed to inspect the bladder mucosa before and after distention at 70 cm. of water pressure for 2 or 6 minutes. Photographs of the right, posterior and left of the bladder surfaces taken before and after the distention were scored on a scale of 1 to 5 using a panel of standards. Five urologists blinded to the source of individual photographs independently evaluated 120 research images interspersed with 46 other pictures from a library containing images from 19 symptomatic patients with and without interstitial cystitis. RESULTS: A total of 20 normal women with a mean age plus or minus standard deviation of 29+/-6 years consented to participate in this trial during laparoscopic tubal ligation. Photographs of bladder sites before and after distention with 890+/-140 ml. were scored as 1.4+/-0.3 (before distention) and 3.1+/-1.1 (after distention) on the scale of 1 to 5. The increase in scores following distention in normal subjects was seen to the same degree and in the same proportion as in patients with symptoms of interstitial cystitis (8 of 19 symptomatic patients in this series met current diagnostic criteria for interstitial cystitis). Slight but significant differences were seen among sites in the bladder but not between 2 and 6-minute distention durations. CONCLUSIONS: Bladder mucosal lesions characteristically associated with irritative voiding symptoms and pelvic pain in patients diagnosed with interstitial cystitis were observed in asymptomatic women.

[Katrina]

You have seen some great experts here. Experts don't agree. One thing I tend to believe is that a doctor that knows IC is complex and not just one thing going on is more likely to be right than a doctor that sees only one aspect of the condition...in my personal opinion. I love the PT your refereing to as far as her therapy and how well she does things but although that is a big part of things I think you can do a lot for the muscles and get tons of relief but those that have severe ulcers will still suffer so she is likely missing at least some patients.
Now I am not suprised at what she shaid since I am familiar with her beliefs but although I think that is a huge part of things I am not sure it is a good idea to ignore the damage in the bladder. calming the whole pelvis down gives you a better chance to heal yes but so does a bandaid...I prefer both rather than one.

I am not sure what about Dr.W's treatment your not interested in but if you think they won't comfortable some of the PT is likely to be uncomfortable too.
I know of patients that bennefited most from PT and I know of patients that got the best PT (including Rhonda) and still needed more treatment.
Do you know of the group http://health.groups.yahoo.com/group/happypelvis/ happypelvis? Many patients with IC that have seen Rhonda are there.

There is more that walking an hour does than uses muscles...and things can get better!!!!

Anyway...I hope you find the path that bets fits you and your needs to relief. :grouphug:

[carol5555]

Hi Katrina

There is nothing about Dr Whitmores treatment plan that I do not like, but I just truly want to know that my bladder is the culprit. I do not wish to instill everything under the sun into my bladder and pop elmiron, if my pelvic muscles are causing referred pain to the bladder.

Just really confused right now after my correspondence with Rhonda and the confirmation that I received today from simply exerting my muscles and all the pain even the pain with urination that was gone for a month, even while drinking coffee and eating some of the foods on the avoidance list for IC.

Then further complicating matters, reading the article I just posted which states that asymptomatic women have lesions in their bladders! ugh

Just not sure who is right or what treatment plan to follow right now.....

[Cassaundra]

Carol,

IC is a multifactorial disease.

I do have PFD and IC and Endo and Asthma and Chronic sinus problems.

I have seen a local PT in my area and I have also seen a well-known one at a University Hospital. Want to guess who the better one was? It was actually the local PT, to my surprise.

I have also had rescue installations over a series of 8 weeks. These have helped immensely.

I am now comfortable to live my life daily. The only thing that bothers me currently is my PFD, which I am doing home therapy for. A good book to read about PFD is Heal Pelvic Pain by Amy Stein. It can be found in the ICN Shop.

Sometimes when you have more than one issue going on in your body, you cannot seperate them until you treat each one individually. When I was first diagnosed my back and pelvis were a mass of one single pain. After treating my IC, endometriosis, and PFD, I can now tell the difference between what is paining me.

I wish you good luck and I urge you to try all therapies for both IC and PFD.

P.S. You could try seeing another doctor for a 3rd opinion.

[carol5555]

Hi Cassie


How do you know what is IC pain and what is PFD? I always read that burning urination was a hallmark sign of IC. Well, the burning urination was gone for a month for me (even while drinking coffee and some IC "no no" foods) until today when I went walking for 3 miles. I just couldn't believe when I returned and urinated the hot lava urination feeling was back! So I guess now I am questioning, what is IC and what is PFD?? How do you know the IC symptoms aren't the result of PFD? How do you know its necessary to do the instillations and the elmiron?? I certainly don't want to do anything to my body that is definitely not warranted. Just more confused with the article I posted and the correspondence with the pt:(

[Katrina]

http://www.ic-network.com/forum/showthread.php?t=56872 PFD
There is some info on comparing the two
A long walk would flare both in mind. It is a lot of work on the muscles...they will tighten up and push on the bladder...an unhappy bladder will not like that...the tightness itself can be painful. You are likely to dehyrate somewhat and be a bit acidic after that much and that can be flare causing.

Both can cause nerve pain and feel a like in that way. There are some pains that are more PFD than IC but it takes time to know your bladder....some patients feel a burning in their bladder from the acid on their damaged bladder...while there can also be a burning nerve pain with the pfd...it is location and knowing your body that tells the difference.
Many times in IC patients you are experiencing both.
burning with urination can be from acidic urine, tight muscles, damaged urethra, damage near the urethra, UTI, yeast....an IC patient is likely to have experienced all of that at some point or another. Most of my burning was PFD or yeast but in the beginnning before I followed a diet and got rid of my overly acidic body I probably had all of those and never knew which was which.
Your burning sounds like it could likely be more PFD related but after going through an unnatural metapause and having my vaginal skin die I have a glimpse of what burning from damage near the urethra is like...and a lot of walking could make that area more sensitive just because of the large amount of movement.

I realize that seeing IC is not a definate sience. I knew that a long time ago. But I also know that there are signs in me that aren't very muscle related just like there are signs in me that are very muscle related. I know I have both and it has taken a lot of reading and paying attention to symptoms and flares and what caused them and what has helped to know that.
I am certain that IC treatment alone wouldn't worked for me just like PFD treatment alone is unlikely to have been enough for me since I still can't get off my IC meds even after the PT.

I don't know what is going on in your body. You may be a PFD patient with mild IC. Your IC may heal after the irritation from the PFD stops. I don't know but the pain your explaining sounds like both more than just one to me. For that reason I would talk about your worries with Dr.W. Something that hyro's don't show is how damaged your urethra is...and I am more interested in that than your baldder when you are talking about pain when going. I am not sure I would be interested in instillations since they don't address the urethra much and your pain isn't constant sounding. I love rescue instillations as a treatment but I would discuss getting the medicine to the urethra when I hear about your symptoms.
Can you tollerate a catheter?

Anyway, I hope you get the therapy, treatments and so on that work for you and questioning things may help you to get what is best for you so do what you need to to get the answers you need. You should feel comfortable and I support you questioning things.
I hope I haven't upset you and added a 3rd concern to the picture or anything but I am looking at your symptoms and focusing on what will be helpful. ((hugs))