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Dear all,
I wonder if anyone can shed light on my current conundrum re my symptoms. I am currently wondering what the heck is going on with me! Is it IC at all? See what you think:
1) I have never had urgency or frequency, just dull bladder sensation. Indeed, when younger, EVERYONE went much more than I
2) I have a huge bladder capacity - about 1200 cc (awake). I drink lots of water (4-5 litres per day) but still only go to the loo about 3/4 times
3) When this whole nightmare started, and I had pelvic exams, I could not feel my bladder despite it being full at the time upon examination. I thought IC bladders were supppsed to hurt upon examination. This is the same now. It can have over 1000ccs of water in there but does not hurt/no tenderness upon internal exam!
4) I had a cystoscopy, which showed trabeculations, a few points of inflammation and a couple of things that looked like ulcers (to me - microscopic, but did look like damaged tissue). The rest of the bladder was clear. Some inflamed blood vessels were evident too (from the pictures). Biopsy showed very mild inflammation and no mast cells. Uro was very surpised at the intensity of my symptoms given the findings. The trabeculations are meant to make your bladder smaller - yet mine is huge. Also, the trabeculations must have happend while I was in 'remission' for the past 15 years, yet I did not even know where my bladder was during this time. I did always have a huge bladder capacity though and only went to the loo two/three times per day. I guess the trabeculations have come from this.
5) I had a lap. several years ago and this showed enlarged blood vessels ON my bladder surface and on my right ovarian fossa. This is where I am currently feeling intense symptoms. My symptoms have always felt like they were 'on the outside'.
6) I've never had bladder pain but a 'sensation'. My intense symptoms are what I have now realised to be nerve inflammation in my pelvis
7) Previously, bladder always felt better when full, as does now.
8) I've never been affected by foods or drinks (I have always been able to drink alcohol, eat vinegar, eat spices, etc.).
9) I went into 'remission' instantly upon pregnancy - literally. If the bladder were to heal once in remission, surely it would need time to do this? It felt like nerves hd been turned off.
10) I've never had IBS, or anything else. Did have allergies though but these seem to have dissipated over the past few years. In fact, during the past 15 years, I was the healthiest out of my cohort of friends, etc..
Does this sound like IC or some nerve thingy? I would happily settle into treatment, and am going to continue with it whatever, but I just have a niggling feeling that there's more to my story than 'just' IC. Any thoughts greatly appreciated.
your symptoms
Hi Vin,
Have you asked Matia these questions? I would think she'd be able to give you a sense of what she thinks is going on for you and that may be the best thing to ease your mind. The thing that I keep coming back to is that it doesn't matter if we call what we have IC or something else, it's an imbalance in the body that needs to be addressed. If you believe a lot of your symptoms are related to nerves in the pelvis, again, I think Dr. B would be able to shed some light on what's going on. If you have all kinds of symptoms that you are not sure are "IC", that's why it's great to work with Dr. B because she can treat the whole person rather than "IC" (I'm using quotes because I really think IC is a convenient way to clump a variety of symptoms together that isn't a "disease" per se but a body imbalance). If you think it would ease your mind to explore other types of therapy, then you should do it, but I think Matia would be able to give you some of the answers to questions youre asking here. I also think that if Matia thought there was something going on with you that she couldn't treat, she would tell you.
One of the greatest things I have benefitted from during this ordeal has been working with a transpersonal therapist to help me with the mental anguish caused by physical pain. A lot of what I did with her was body awareness practices and meditation. More than anything, it helped me start to change my thought patterns and ease into accepting my current experience. This is not to say be complacent, but at some point, I think it may be important to choose some path of treatment to place trust in, maybe it's treatment with Matia, maybe something else for you. Creating a mental paradigm that supports rather than doubts your decisions could be a great gift to give yourself during this trying time. I hope you find some moments where you have some peace of mind, I know how hard it is to live with so much uncertainty and doubt.
You are right, of course.
It doesn't matter what the label is. However, I do wonder if I can do adjunct therapies to help me. I'll speak to Mati and look into it. Thanks for the advice.
You may find that your
You may find that your symptoms change as you go through the treatment. One set of symptoms will(may) turn into another.
Your fatigue and pain may go away first, then you may go through motions of other symptoms that are less intense.
Ceb- Where did you find
Ceb- Where did you find this type of therapist? What are the questions to ask when finding the right one? I starting seeing a therapist last summer but didn't feel at all that it was helping me. I have found a lot of help in the 12 step model of acceptance, etc but I would love to have some more help witht he emotional coping part of this disease and treatment.
Vin- I can't tell you what to do but one of the brilliant things about Chinese medicine and Matia is that she looks at the body as a whole. I think you gravitated towards her for a reason. This is a treatment that can't really be done in conjunctin eith other treatments so maybe you could just settle into it and relieve yourself of the "what ifs?" Uncertainty is really tough but we have to go in some direction- this seems like a good one for people with pelvic/IC issues!
tp
Hi Dier,
I could ask my therapist for a reference for you or could pass along her number and maybe she could point you in the right direction. She is AMAZING!
When I was living in NYC I also looked transpersonal therapists on the internet and remember coming across some sort of database that listed them by area. Here, I found it- here's the link to search, just type in the area you live and then refine it by selecting transpersonal in "type of therapist".
http://therapists.psychologytoday.com/rms/prof_search.php
I hope you find someone good! It has been such a great support for me through all this.
-Claire
Oh please ask her! That would
Oh please ask her! That would be great! I am in the Philly suburbs. Can you email me her number?
deirfinnegan@gmail.com
I will also look on the database. Wonderful.