Newly dx have LOTS of questions

[kbdbforever]

I have recently been dx with IC. I had surgery on 2/15/06 for endo and to open a blocked fallopion tube, as we were trying to get pregnant for over a year with no success (I'm 36, so we thought we should step it up a bit), had one UTI on 3/1/06 treated with Bactrim, then fine. Then developed acid reflux from the surgery, which went away by end of April. Went on vaca at the end of 4/06 and when we flew back had horrible urgency/pressure - that was 5/1/06 - went to gyno who did surgery, he guaranteed me he didn't touch the bladder except to put the catheter in, gave me bactrim and sent me on my way. Next week we tried Cirpo, no results. He sent me to a uro telling me no way I had IC as I had never had any bladder problems in the 15 years I have been his patient, but he wanted to make sure. Well, uro said he thinks it is IC and gave me Elmiron and Elavil. Said he thought it was probably always there (even though no UTI's EVER) and that maybe the surgery irritated it enough to make it flare up. Which brings me to my first question, has anyone else had it start like this? With your collective experiences, does it progress from this point to the pain I see talked about in this site? Did anyone ever have problems with Elmiron with nausea and upset stomach, I don't know if it's cuz I'm upset or the meds but I can barely eat my stomach is so upset. Also, the Elavil, I don't do well with Antidepressants (they REALLY wack out my system) and I tried to explain that to this doc and he basically told me that was the best remedy out there and if I didn't take it I wouldn't be doing myself any favors... My husband was with me and just begged me to try it just to see if it helped, as he has seen how upset this whole dx is making me. Is Elavil really like the gold standard for this? Is there anyone else that can't take the Elavil that is still able to report their symptoms were helped with another therapy? Symptoms are URGENT need to urinate and then NOTHING or next to nothing comes out, as soon as I stand up from going to the bathroom I feel like I have to go again and there is constant pressure in the bladder like someone is pushing their thumb into my bladder from the front to the back.

[Katrina]

Did anyone ever have problems with Elmiron with nausea and upset stomach Yes...try taking it out of the capsul. The capsul causes most of the side effects especially those of the digestive system.
has anyone else had it start like this?
Yes...surgery started my IC symptoms as with quite a few other people. Many people had their first symptoms right after something....weather it be a trammatic experience in their life, surgery, injury, UTI, or whatever.
I have never taken Elavil and am doing pretty well. Usually something to treat the symtpoms at the nerve point and calms you helps because it alows you to survive and relax a bit while your body heals. My best help for that is my anticonvulsants.....and since I am an epileptic I chose that....one thing that doesn't really do though is help much with relaxing you....but their are some natural things that might.

With your collective experiences, does it progress from this point to the pain I see talked about in this site?
In most cases IC is not progressive. None the less certain things can make you worse like UTI's, abdomenal surgery, and such. IF you can avoid those things you will likely improve after diagnosis. Following the diet seems to help with that!!
Your symptoms sound like Pelvic Floor Dysfunction(PFD). Did any doctor look into that...Sounds like a bladder spasm.....and some retention (keeping you from urinating normally)...you need to relax those muscles...since you have retention I don't know if you want to try antispasmodics yet (do you have control...like ever not make it to the bathroom?)
I sugest you talk to your doctor about PFD but some things that you can do that help are baths, heat and cold on your pelvis....and learning to relax those muscles which is especially important when you urinate.

THE GOLD STADARD OF TREATMENT IS DIET! Diet helps more people than anything else!!!!!!!

Acid reflux is common with IC patients.....and I find that antiacids help my IC so even though it has been quite a while since the acid reflux has bothered me (last time I had a endoscopy it was all better) I still stay on the meds since my stomach seems to get acidic easily (possibly because of my other meds grr) and it really helps my IC and appetite.
I also have endo which is very common amoung IC patients.

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=27584 newbie kit moved to newbie board from the oldies to the newbies
I hope you find a treatment plan that works out great for you!
http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This is a link to a site with IC treatments rated by patients.

:grouphug: :welcome: to the group!!!

[Dixiefireball]

Katrina gave you GREAT advice!!!

I wanted to stop by and :welcome: you to the ICN family. You are never alone with this huge family they will always be someone who understands. If not we will try our best too!
We are here for you no matter what. What is most important about us here?? WE CARE!!!

Please keep us updated on how you are.
sending you hugs and prayers
Rhonda

[theclownster]

Hi there! I too want to extend a warm welcome to the ICN! I know we've sent a few pm's, but I'm not sure if I formally welcomed you aboard. There are a lot of great people here who can be here to listen and support you whenever you need it. This site was a huge help when I was first being diagnosed. I hope it brings you some comfort.

I hope you are feeling better soon! Take care!

Warm hugs,
Jennifer

[peaceplease]

I am no expert in any of this, but I will say it sounds like you have urinary retention and Elavil has an anticholergenic effect and because of that one of the possible side effects of Elavil can be urinary rentention, so that is something to think about and maybe talk to your urologist about.
I saw mine today and he said he either does Elavil alone or Elmrion with Hyrdoxine.
I hope you feel better soon. My IC started after a routine UTI, infection went away but symptoms never did. I have bladder pressure as my main symptom. I had no history of bladder problems with the exception of maybe 4 or 5 UTIs in my whole life.

[dg2901]

Whlie my symptoms didnt start after a surgery, the symptoms did appear literally overnight. The urgency, frequency, pain, pressure, etc--I can surely sympathize.

Theres nothing else I can say that hasnt already been posted. Just know youre not alone...

Take care
diana

[kbdbforever]

[QUOTE]Your symptoms sound like Pelvic Floor Dysfunction(PFD). Did any doctor look into that...Sounds like a bladder spasm.....and some retention (keeping you from urinating normally)...you need to relax those muscles...since you have retention I don't know if you want to try antispasmodics yet (do you have control...like ever not make it to the bathroom?)

I don't know if I did this quote thing right, but in regards to your question above Katrina, I do sometimes not make it to the bathroom, like I'll see the toilet and my body will just start letting loose, usually just a little, no full blown full release, but yes, I have that problem.

I did ask him about PFD and if I should be doing something about it and he said he didn't think that was the case and "it doesn't help IC", needless to say, I have been in contact with someone from Michigan on this board to find a new doc asap that will actually listen.

This forum is very helpful, I appreciate everyone's support.

Also, taking the Elmiron out of the capsule, has anyone had problems with that, like, less effectiveness or does it still work okay.

[emilyrose197377]

KBD I had alot of probs with my stomach on elmiron and even taking it out the capsule made me sick. I started taking the elmiron out of the capsule and used gelatin capsules and fill it with the elmiron and it doesn't cause stomach probs anymore. Good luck.

[kbdbforever]

Emilyrose, where do you get the gelatin capsules to put it in? I will go get them immediately! Did you just have to force yourself to eat from the nausea? I find that everytime I go to eat since I've been taking them I have to choke my food down. I woke this morning with the burning which I attribute to that med too...

[kbdbforever]

Emilyrose, also, has it helped you?

[emilyrose197377]

Emilyrose, where do you get the gelatin capsules to put it in? I will go get them immediately! Did you just have to force yourself to eat from the nausea? I find that everytime I go to eat since I've been taking them I have to choke my food down. I woke this morning with the burning which I attribute to that med too...KBD yes it has helped me. You can buy them from at health food store or online. Yes taking them has helped me. I felt that way when I was taking n in the original capsule. Good luck.

[kbdbforever]

What exactly is Pelvic Floor Dysfunction?

And Emilyrose, I note you are from Michigan too, I sent you a pm for some info. Thanks guys.

[Katrina]

I have bought gelatin capsuls at the pharmacy in the past.

You may want an antispasmodic than if you don't have control. :grouphug:
Elmiron helped me significantly but it took about 4 months.

Believe me the Makers of Elmiron know that the capsul causes the symptoms and many, many, many people have taken it in water instead. Also it is sometimes instilled straight into the bladder....it is still effective without the capsul!

Pelvic Floor Dysfunction is a weakening and or tightening of the muscles of the pelvic floor

Dr Moldwin describes it like this"non-neurogenic, uncoordinated behavior of the pelvic floor musculature" He says that about 70% of IC patients have PFD. Dr. Moldwin is a leader in IC.

When you say you woke up with burning.....what kind of burning...in your stomach?

[kbdbforever]

You may want an antispasmodic than if you don't have control. :grouphug:
Elmiron helped me significantly but it took about 4 months.

I will defintely look into this, as it is a slight problem

Believe me the Makers of Elmiron know that the capsul causes the symptoms and many, many, many people have taken it in water instead. Also it is sometimes instilled straight into the bladder....it is still effective without the capsul!

Good, I was worried about that, I went and got some capsules at lunch today.


Pelvic Floor Dysfunction is a weakening and or tightening of the muscles of the pelvic floor

Dr Moldwin describes it like this"non-neurogenic, uncoordinated behavior of the pelvic floor musculature" He says that about 70% of IC patients have PFD. Dr. Moldwin is a leader in IC.

I will definately look into this. I would imagine mine are too tight (not that I'm in any kind of shape!) because I am constantly under stress at work and am always tensed up. I note some people mention stress is a major contributor to the process once it starts, has that been your observations as well?

When you say you woke up with burning.....what kind of burning...in your stomach?[/QUOTE]

Stomach, like acid reflux or acid indigestion type burning, felt like my stomach was going to burn a hole through my side, but it is okay now.

I really appreciate all of your help, all of you!

[emilyrose197377]

Yw anytime.