Reannin
01-25-2010, 01:56 PM
I warn you. This will be lengthy, so for whomever reads this and can possibly give me some advice, PLEASE :pray: read all of it in it's entirety and thoroughly so you can see what my symptoms are and how they came about. I just don't want someone to suggest something that might not really be the issue and start scaring me. This IC thing already has me mentally and emotionally drained.
I was wondering if SOMEONE out there has, or has had, an experience like mine, and can point me in the right direction of what doctor I might need to see.
My IC started back in July with JUST unrelenting urgency and frequency. Nothing else. One month later, it progressed to where I was starting to have a painful/tightening ache down in my vaginal, perineum, butt, and anal area. The urgency didn't seem as bad anymore, but the pain was awful. Maybe the pain seemed to stand out more than the urgency....I don't really know. I thought maybe I was forming PFD. Well, ANOTHER month later after the pain started, I was put on Amitriptyline by my new uro who did my hydro and diagnosed me with IC. Almost instantly, my pain level dropped a couple of notches and the pain continued to improve over a couple of months. It got to the point where I was either no longer feeling that tightening/painful ache down there to sometimes feeling it, but it was weak. I could feel myself actually loosening up down there. I was noticing I was unconsciously tensing down there once the Amitriptyline calmed the pain down. Also, as I slowly started to loosen up, I felt like my knees or legs were going to give out at times when I walked. It didn't hurt, it just felt weird. It only lasted a couple of days.
Once I started to feel barely to very mild pain, I started to massage down there because it felt good. I started to notice that when I would massage around that area where I was hurting , I felt sore and sometimes it felt like stinging when I pressed some spots, but not all. Eventually, those spots were no longer sore or stinging, but I was finding other spots that were sore or stinging. Literally, it was like once I worked on my vaginal/perineum area, that would go away and then it would move to my rectal area. Then THAT would go away, and I'd start feeling spots on my butt cheeks.....that went away.....then there's spots on my inner thighs......You see the pattern??? It's like it's slowly moving down my leg. One night in the shower, I was washing my feet with the loofa, and I felt a sharp pin needle feeling right under my left foot on the heel part. It went away the next day, but occassionally, it will pop up every now and then.
But there's more. Suddenly, while I would pee, it was like I could almost feel my bladder emptying inside me. It felt like a tickly/prickly feeling. It didn't hurt, but it concerned me and it was annoying because, after peeing, it would make me still feel like I might still have to go. I also started to realize that I think my IC is primarily a muscle/nerve issue because I noticed that my now mildly painful tightening prickly feeling in my bladder would increase when I stood and walked around (probably holding tension in my pelvis when I walk??). Also, I've been having a wierd mild flicking/tingling in my urethra area. It doesn't hurt, but it tickles and it makes me think I have to pee. Also, when I would drive in the car, I could feel the vibrations vibrate underneath my butt and underneath my hamstring and it literally "jump starts" my bladder like you would jump start a car. I'd just feel a mild-moderate tight pain feeling around primarily ONLY ON my left side of my vagina and high pubic area.....BARELY on my right. It's like it's more sensitive on my left. Occassionally, I'd feel some shooting mild pain feelings down my left leg, inconsistently on my right, and sometimes around my lower back when I'm driving. But it's mainly only when I drive. The vibrations stir everything up. I would sometimes also feel it if I was standing up walking around.
I then went to the Uro to describe what was happening to me (which both him and his NP looked pretty perplexed when I explained this) and that I thought my IC was primarily a nerve issue that needs to get settled down. I requested to increase my Amitriptyline to see if it would settle things down more since it worked so well for me in the beginning. Well, certain things have settled down like that annoying tickly/prickly feeling when I pee or drive in the car. It's not gone, but it's not SO annoying anymore and I was starting to get optimistic that this would do the trick. Well. Now I have new problems. NOW...all of the sudden I've noticed that when I drive, it starts vibrating and stirring up the nerves in that same area I described above, but now the weird nerve sensations are starting to radiate all over my body. Lately, it's been stirring things up in my back area, and it travels up sometimes to the top part of my arm and runs down to my hands and through my fingers, then sometimes it travels in my stomach and around my throat. I start to feel like my stomach and throat is tightening. Then I feel tightening in in my jaw area, and then it goes to my head, causing me a headache. I will also feel soft prickling sensations in my lips. While driving, my arms will get that feeling like I just did an arm workout with weights. None of this really hurts, except for the headache part. When I finally get out of the car, things start to slowly settle down.
There's only been an occassional day here or there that these weird nerve sensations will travel all throughout my body when I'm up standing and walking around. I'm a teacher, so I do that a lot. But, when this is happening, it is not painful, it just feels like prickling all over the areas I talked about, and sometimes I can feel those areas tightening up without me doing it like my jaw and throat area. When I'm off from work, or at home just sitting around, I feel none of those weird nerve sensations except for the nerves sensations in my bladder after I pee, and underneath my butt and underside of my hamstrings just right under the buttcheeks. I have started stretching, and this alone will sometimes take the feeling of my bladder away or make it less noticable. There have been times when I don't feel my bladder at all. There's even a "pressure point" spot on my left butt cheek, that when I knead into it, my bladder feels normal! I wish I had someone permanently massaging there for me so I can feel normal...geez...
WHAT IN THE WORLD IS GOING ON WITH ME?!?! Am I the ONLY person to have these strange symptoms? Ugh! How could something that started off as just urgency/frequency has now blown up to this strange thing? I even was put on a few typical IC treatments (Elmiron, Amitriptyline, Darpaz) only a month and a half into my symptoms. I thought the meds would keep me at base level and just bring me down from there, but I guess not.
Who should I see about this? I've already explained all of this to the uro, but the wierd nerve sensations throughout my entire body didn't start until a week after I saw him and increased the Amitriptyline. Could this be a side effect from Amitriptyline??? That would seem odd to me, but you never know. Should I getting a neurologist in on my IC...???....a physical therapist..???....a chiropractor....???? There are so many things that seem to be going on that sometimes I feel like I need all three. If you were me, which route would you take? If you HAVE been me, which route did you take?
Thank you SO much for taking the time out to read my rather lengthy post. I just can feel it in my body that something is just not right, and I'd rather take care of the problem now then wait and let it get worse.
I was wondering if SOMEONE out there has, or has had, an experience like mine, and can point me in the right direction of what doctor I might need to see.
My IC started back in July with JUST unrelenting urgency and frequency. Nothing else. One month later, it progressed to where I was starting to have a painful/tightening ache down in my vaginal, perineum, butt, and anal area. The urgency didn't seem as bad anymore, but the pain was awful. Maybe the pain seemed to stand out more than the urgency....I don't really know. I thought maybe I was forming PFD. Well, ANOTHER month later after the pain started, I was put on Amitriptyline by my new uro who did my hydro and diagnosed me with IC. Almost instantly, my pain level dropped a couple of notches and the pain continued to improve over a couple of months. It got to the point where I was either no longer feeling that tightening/painful ache down there to sometimes feeling it, but it was weak. I could feel myself actually loosening up down there. I was noticing I was unconsciously tensing down there once the Amitriptyline calmed the pain down. Also, as I slowly started to loosen up, I felt like my knees or legs were going to give out at times when I walked. It didn't hurt, it just felt weird. It only lasted a couple of days.
Once I started to feel barely to very mild pain, I started to massage down there because it felt good. I started to notice that when I would massage around that area where I was hurting , I felt sore and sometimes it felt like stinging when I pressed some spots, but not all. Eventually, those spots were no longer sore or stinging, but I was finding other spots that were sore or stinging. Literally, it was like once I worked on my vaginal/perineum area, that would go away and then it would move to my rectal area. Then THAT would go away, and I'd start feeling spots on my butt cheeks.....that went away.....then there's spots on my inner thighs......You see the pattern??? It's like it's slowly moving down my leg. One night in the shower, I was washing my feet with the loofa, and I felt a sharp pin needle feeling right under my left foot on the heel part. It went away the next day, but occassionally, it will pop up every now and then.
But there's more. Suddenly, while I would pee, it was like I could almost feel my bladder emptying inside me. It felt like a tickly/prickly feeling. It didn't hurt, but it concerned me and it was annoying because, after peeing, it would make me still feel like I might still have to go. I also started to realize that I think my IC is primarily a muscle/nerve issue because I noticed that my now mildly painful tightening prickly feeling in my bladder would increase when I stood and walked around (probably holding tension in my pelvis when I walk??). Also, I've been having a wierd mild flicking/tingling in my urethra area. It doesn't hurt, but it tickles and it makes me think I have to pee. Also, when I would drive in the car, I could feel the vibrations vibrate underneath my butt and underneath my hamstring and it literally "jump starts" my bladder like you would jump start a car. I'd just feel a mild-moderate tight pain feeling around primarily ONLY ON my left side of my vagina and high pubic area.....BARELY on my right. It's like it's more sensitive on my left. Occassionally, I'd feel some shooting mild pain feelings down my left leg, inconsistently on my right, and sometimes around my lower back when I'm driving. But it's mainly only when I drive. The vibrations stir everything up. I would sometimes also feel it if I was standing up walking around.
I then went to the Uro to describe what was happening to me (which both him and his NP looked pretty perplexed when I explained this) and that I thought my IC was primarily a nerve issue that needs to get settled down. I requested to increase my Amitriptyline to see if it would settle things down more since it worked so well for me in the beginning. Well, certain things have settled down like that annoying tickly/prickly feeling when I pee or drive in the car. It's not gone, but it's not SO annoying anymore and I was starting to get optimistic that this would do the trick. Well. Now I have new problems. NOW...all of the sudden I've noticed that when I drive, it starts vibrating and stirring up the nerves in that same area I described above, but now the weird nerve sensations are starting to radiate all over my body. Lately, it's been stirring things up in my back area, and it travels up sometimes to the top part of my arm and runs down to my hands and through my fingers, then sometimes it travels in my stomach and around my throat. I start to feel like my stomach and throat is tightening. Then I feel tightening in in my jaw area, and then it goes to my head, causing me a headache. I will also feel soft prickling sensations in my lips. While driving, my arms will get that feeling like I just did an arm workout with weights. None of this really hurts, except for the headache part. When I finally get out of the car, things start to slowly settle down.
There's only been an occassional day here or there that these weird nerve sensations will travel all throughout my body when I'm up standing and walking around. I'm a teacher, so I do that a lot. But, when this is happening, it is not painful, it just feels like prickling all over the areas I talked about, and sometimes I can feel those areas tightening up without me doing it like my jaw and throat area. When I'm off from work, or at home just sitting around, I feel none of those weird nerve sensations except for the nerves sensations in my bladder after I pee, and underneath my butt and underside of my hamstrings just right under the buttcheeks. I have started stretching, and this alone will sometimes take the feeling of my bladder away or make it less noticable. There have been times when I don't feel my bladder at all. There's even a "pressure point" spot on my left butt cheek, that when I knead into it, my bladder feels normal! I wish I had someone permanently massaging there for me so I can feel normal...geez...
WHAT IN THE WORLD IS GOING ON WITH ME?!?! Am I the ONLY person to have these strange symptoms? Ugh! How could something that started off as just urgency/frequency has now blown up to this strange thing? I even was put on a few typical IC treatments (Elmiron, Amitriptyline, Darpaz) only a month and a half into my symptoms. I thought the meds would keep me at base level and just bring me down from there, but I guess not.
Who should I see about this? I've already explained all of this to the uro, but the wierd nerve sensations throughout my entire body didn't start until a week after I saw him and increased the Amitriptyline. Could this be a side effect from Amitriptyline??? That would seem odd to me, but you never know. Should I getting a neurologist in on my IC...???....a physical therapist..???....a chiropractor....???? There are so many things that seem to be going on that sometimes I feel like I need all three. If you were me, which route would you take? If you HAVE been me, which route did you take?
Thank you SO much for taking the time out to read my rather lengthy post. I just can feel it in my body that something is just not right, and I'd rather take care of the problem now then wait and let it get worse.