asking for help

[kelley222]

I posted here once about a month ago. I am trying to figure out if IC is what I have, or if it is adhesions from my c-section I had 7 months ago. I was clincally diagnosed with IC after going from doctor to doctor trying to figure out what was wrong with me. I have been in CONSTANT, excrutiating pain since December, level 7-8 on a scale from 1-10. I have been taking pain pills daily since January. My pain in the last 2 weeks has gotten unbearable, a 9-10. It has never let up since December. I have been doing the IC diet and have found no relief. I have tried the aloe vera capsules, MSM and accupuncture, to no relief. My question to all of you is does this sound like IC? The constant pain? I don't have flares, it has lasted almost 5 months now with not much fluctuation in pain, only worseninig. I have frequency (20+ daily) (3-4 times at night), urgency, but the worst is the constant pain. It feels like somthing is squeezing and stabbing from within, and constant burning. The pain lessens a bit after I void, the burning gets worse right after I void. Your opinion is greatly appreciated. My other alternative that I am seriously condsidering is lapo to look for adhesions.

[stef000]

I think you should go see a urologist since your story sounds exactly like mine.......
and you might want to go to a gynecologist if you have known adhesions to get that taken care of as well....
But definitely go to a uro and get something like oxybutinin(an antispasmodic)
http://en.wikipedia.org/wiki/Oxybutinin
it really helps me.....
and get something to dull the pain maybe start with something like codeine for a week or so while things can calm down....
But yeah your story is exactly what i went through.....he didn't see much in the in-office cystoscopy but becuase of the symptoms(same as yours) he diagnosed me with IC and started me on antispasmodics and elmiron....
i hope you get relief soon
take care
:hi:

[leelee88]

What you are describing does sound like IC. But you really need to see a URO to get Dx and to rule out other things, just in case you have something else going on. I hope you get the answers you are looking for soon.

[marsi4]

Hi,

I'm so sorry at what you are going through. From my understanding you started having pain two months after your c-section. It sounds like ic but also like neuropathic symptoms. It happened soon after your c-section it is possible that it is a result of your surgery which makes me wonder. I hope that they didn't cause any nerve damage. I had met someone in a pain clinic who had a c-section and developed chronic pain right after. She later found out that they had caused nerve damage in her abdomen. They apparently cut too deep. I pray that it's not what has happened with you. It's hard to say what is the cause because pelvic neuropathic pain does affect the bladder and cause ic symptoms. If this happened many months after your c-section then it may be ic. I hope that you can get some answers soon and feel better. I have the same symptoms and still unsure of what I have after 35 years if it's just ic or neuropathic pain PNE which affects the bladder as well. These two conditions can be inter related. One may cause the other or you can have both independently of one another. This is my understanding of what I have read. I'm just sharing info. A laporoscopy is a good way to try and get some answers and rule out other problems.

Marsi4

[kelley222]

Sorry, should have been more specific. I have seen 4 urologists. 2 clinically diagnosed IC based on symptoms, and 1 said I didn't have it long enough to be IC(only two months at the time), and I'm still not sure what the fourth was even talking about (waste of time!). I'm just really scared to go through the surgery if it is IC. It just sounds like most people aren't in constant pain like I am. It sounds like for most people with Ic, the pain comes and goes. That is why I think it might be a complication from my c-section.

[hdb1982]

Alot of us are in constant pain. Sometimes I hear ppl talking about flares and I'm like, if increased pain is a flare I have been in a flare for over 2 years. For me a flare is an increase in urgency/frequency because pain never goes away for me. Just varies from level 4-9.

[traceann]

Hello there! Well, since you finally got your diagnosis (at least you have a name for it now, lol - nothing worse than not knowing, ugh) has your doc put you on any IC treatments? Like Elmiron etc.? I see you've been doing the IC diet, have you been doing it strictly? (I know I had to be crazy-strict with it in the beginning, boring, but eventually helpful, more than I actually realized ;) )

For me, by the time I was diagnosed, I was hurting 24/7 - barely no breaks. It took a few months of medicines and diet to help to get me to the point of having some good days in between the bad. There's really no instant help in treating IC, most things do take some time to kick in (like you probably already know Elmiron can take 3-6 months to feel some improvement and 6-12 months to feel full benefits etc, ugh!), which is why for me, the combo of my medications (Elmiron, Ditropan and hydroxyzine) and the diet did more than one or the other if they were on their own. The diet helped, but wasn't the 100% fix - but it played a HUGE role for me in my managing of my symptoms. It calmed things down to a manageable level - not gone completely, but manageable. I could at least function, there was pain and discomfort most days, but the levels were reduced enough for Tylenol to subdue it etc.

As time went on, the longer I was on my medications and following the diet, pretty soon good days started to outnumber bad days and so forth. It can get better, it's just sometimes a relatively slow process, requiring patience, where if you're like me and you're hurting, I had a severe shortage of, lol! ;)

I believe that when all my troubles started with IC, it all was so very subtle - flying under the radar. I had frequency like you wouldn't believe - but easily explained by the fact I constantly had something with me to drink, water, soda etc. I drank alot, therefore I peed a lot. By the time my urethra started spasming and acting up, we thought it was just that - urethral spasms, so my doc put me on Ditropan (oxybutinin) -and that helped the spasms, the painful urethral "pinching" feelings and the pain on urination that came along with most times. But, it didn't help my frequency. Which, when I went back to the doc he was surprised to hear. Eventually (after a couple UIT's etc) we came to the IC conclusion. I was the one who brought it up first - as by that time I had been researching and researching it and was pretty sure that's what was going on. At that point we started me on treatment for it. I was miserable at that point, in pain all the time, barely able to function, it was a nightmare - but it did get better slowly but surely. A pain/voiding diary really helped me keep track of everything, from what I ate and when, when I took meds, every time I voided etc. It helped me see the teeny victories - like maybe one less trip during the day to the bathroom. I would have never seen that had I not been keeping track. At my worst I was up to 40+ times a day, and 4-5 at night. It wasn't until I added in the hydroxyzine (Vistaril formulation) that I started sleeping at night etc.

I hope this helps a little bit, and believe me we all understand your frustrations and what you're dealing with on a daily basis!!!!!!

Hugs,
Tracey