Frustrated & Cramping? How to stop?

[JadensMa]

I was just recently diagnosed with IC after almost 10 years of pain (I will be 26 in Aug), burning and "recurring utis"..which ended up not being "real" uti's but was just being put on antibiotics because blood in the urine means an infection somewhere. :rolleyes:..anyway....

Things were just getting worse...constant burning and major cramping (feels like menstrual cramping), so I found a urogyn off of the IC list and drove an 3 hours away to go. She immediately told me I had IC and Endometriosis and prescribed me Elavil. She confirmed this by doing a laproscopy and cystoscopy. This all was about 3-5 weeks ago. I have been on the Elavil for going on 5 weeks. I still have almost constant cramping and burning. I have been trying SO HARD to do the diet. But I swear its hard!! Especially when you have a husband and 5 year old to cook for and no time to do it! (I am sure we all know how that is!)

ANYWAY....can anyone tell me how to stop this cramping???? I have been trying the heating pad...aleve. But nothing seems to be helping. It gets worse with activity (walking..etc.) And I HATE to stay still.

I know everyone has heard this...I read the posts (which have been AWESOME..THANKS!) and just want to cry because I feel its not going to get better. Want to cry in the grocery store..at work lol everywhere!

If anyone has some tips or suggestions to help the cramping it would be awesome!

WHEW..it feels good to vent! :)

[ICNDonna]

Aleve can be an irritant to an IC bladder so you might want to look at trying something else. When I have bladder spasms (I assume that is your cramping), I take a smooth muscle antispasmodic. The one I take is hyoscyamine, but there are many different ones available. I suggest you discuss this with your doctor.

:grouphug:
Donna

[lisabar36]

Hi there. I am so sorry your feeling so bad. That is the same symptoms I had when I was diagnosed, blood in the urine, constant UTI's (they thought were UTI's). I wanted to let you know Aleve causes me alot of pain!! It will make my bladder spasm and I will feel crampy. Ibuprofen does the same thing to me. Have you tried warm baths? That may help. I would also talk to your doctor on your next visit ( or give a call) and explain those symptoms because there are other meds besides elavil that help with IC. I found Elmiron and Atarax to help me alot along with Elavil. I would try and eliminate the Aleve and see if thats causing the cramping or making it worse? I can tolerate tylenol pretty well. Hang in there and I hope you find something to help with that soon.

[SharonA]

:welcome: to the IC Network...:)

The IC Diet can seem restrictive and difficult in the beginning. It does get better though, especially when you find that it is helping.

Keep working with your doctor to find what medications/treatments work for you. If one doesn't seem to do the job go on to the next one. It can take time, so don't give up before you find the right ones for you.

:):):)

[Briza]

Hi
The others have posted excellent advice about some of the many other treatment options out there.
I will only add that something that might be of help til you see your dr that you can buy OTC is called Uristat or AZO Standard...these are OTC versions of Pyrdium (you may have taken it before? it turns the urine bright orange). Anyway, it is something you can get at any pharmacy, drugstore and most big supermarkets and may very well take the edge off some of your symptoms! Many here use it with much success.
I also want to add that if you have had both laparoscopy and cystoscopy in the past 3-5 weeks you might very well still be in recovery from either or both of those procedures! For some it takes a month or more to completely recover from those procedures. I know you mentioned that you were misdiagnosed with UTIs for many years, but please be aware that since both the Lap and Cysto involve being cathed, that DOES increase the risk for infection and it is not uncommon to develop a TRUE UTI after one of these procedures. So if you have not been tested recently for a UTI probably a good idea to get that done ASAP!
Hope any of this helps...please hang in there!!! You have been suffering for so many years, but you are just now starting on the road to recovery, and finding the right meds and navigativing the diet involves much trial and error, but you WILL find the things that help you, I promise!!!!!!:)

[JadensMa]

Thank you all so much for your responses! I def did not know Ibuprofen and Aleve can make it worse! I have been taking it, thinking it would help:bonk:

I will def call my Dr and ask about the medications you all have recommended. Its frustrating feeling like your on so much meds. But hey, I guess if it helps!

Thank you for the quick responses and I am sure you will see more posts from me! :)