Pls help reassure me...

[JennyK]

I was hoping there would be some ladies on here who could give me some hope with their own success stories.

I'm 26 and I was just this week diagnosed with IC after almost 1 year of symptoms. My symptoms started shortly after I discontinued birth control so hubby and I could try for a baby. At first the doctors kept thinking I was having recurring uti's, but now looking back I don't think it was uti's at all.
We did manage to get pregnant after 6 months of trying, but at the end of the first trimester I had a miscarriage which was devastating! Since the miscarriage my symptoms have gotten so much worse that my doctor advised us to stop trying till this was sorted out (not that we could try much, sex is way to painful). Anyways after being referred to a second urologist I have a diagnosis of IC and he has started me on Elmiron and the IC diet. I have a recheck in 8 weeks.

The uro told me that I can not be pregnant and continue to take the Elmiron, and that there are in fact no meds I can take while pregnant. At this point I don't even know that Elmiron will work for me (but have my fingers crossed!), but I am so worried that even if I find a medication that does work I will never be able to get off of it long enough to get pregnant. All I want to do is try again since the miscarriage, and I am sooo scared that I won't ever feel better, or if I do, I won't ever be able to make it through going off meds to get pregnant. I am so depressed about the whole thing - the baby thing, the fact that I am in major pain/discomfort and not sure if/when meds will help, not getting sleep due to symptoms and just feeling overwhelmed by the diagnosis and the changes I am going to have to make to my diet, which is not going to be easy for me.
I'm just really having a hard time, I'm crying all the time, and there is no one in my life who really understand, or I can even talk to about this.

Anyways I would love to hear stories from those of you who were able to manage to get to the point where a pregnancy didn't seem out of reach, maybe it will help me to be a bit more optimistic.

[tigger_gal]

(((((hugs)))))))))) I wish I could answer some of your questions. I do know some has said they went in remmisson while pregnant.

[Blue_sky]

Hi Jenny,

My husband and I had also just decided to TTC when I was diagnosed with IC (in June 2008). I was in a lot of pain that summer, did get pregnant that August, and then miscarried shortly after. I had to really change my diet (even drinking water hurt at first) and there was a great sense of loss that went with that (that others around me didn't always seem to understand). I was lucky to be able to control things (mostly) with diet. Anyway, when I was feeling better I got pregnant in March 2009 (we did try before then, but in retrospect I wish I had just given my body some time to heal and adapt). I've had a symptom-free pregnancy (normal frequency that goes with pregnancy, but I've really been able to eat more or less what I've wanted). My daughter is scheduled to arrive by c-section on Nov 25th (she's breech). I won't say that I'm not nervous about the c-section, the cath, and whether there is a big flare coming at the end of all of this. But I was in a similar position to yours not long ago and feeling pretty hopeless.

I'm just writing because things seem so dark when you are in the middle of them. I remember feeling like I would never feel better. And It IS hard for other people to understand the sense of loss and fear that comes along with the pain. I can't predict what things will be like for you and I don't know how things will go for me either, in the next few years. But I at least wanted to offer you one story in case it gives you a bit more hope.

Take care,
Steph

[Charisse]

You will get better. It is hard because not everyone who gets better posts here. I don't expect to ever be 100% cured but I am functioning now. I take Elmiron and I took it throughout my whole pregnancy as well as nursing. I understand not all drs are comfortable with that though.. you might want to get a second opinion if it's a med that ends up working for you. It has been my savior.

[purpletomorrow]

Please consider getting a bottle of CystoProtek and DH Aloe Vera and taking them to your physician and seeing if you can take them while you are trying to conceive. You may well be able to, they seem pretty benign. He will know. They've helped me and many others with IC tremendously. They are over the counter, not prescription, here's hoping you can take them and that they help and that they don't interfere with your plans to conceive! good luck to yoU!

[jvr]

Hi,

First off, I'm so sorry to hear of your loss:( I can't even began to imagine what that must have been like for you. As far as the Elmiron, I was told by an IC specialist that it is okay to take. These doctors do definitely seem to differ on opinions. Also, aren't some rescue type instills supposed to be an option during pregnancy? I've heard that they can be safely done during pregnancy...as far as diet, I know it is overwhelming at first. I think for me once I realized I could see that I can control my symptoms somewhat through diet, it was very empowering and made is much easier to follow:) On a positive note, pregnancy actually made my symptoms MUCH better. The first trimester was difficut, but after about 10 weeks my IC went into a pretty good remission that continufed with nursing. That was a very nice and unexpected surprise. The ICA has some literature on IC and pregnancy. Maybe that would also help you to navigate all of this for yourself. :) Good luck.

Jill

[angel7655]

JennyK

I was in the same situation as you. Seven months ago we were about to start trying to have another child when my IC , which had been quiet for years, flaired up. I was told by my urologist that getting pregnant would not be the best thing at that time. I was so upset and cried almost every day. We tried many different drugs and treatments and nothing was seeming to work for me. All this just made me more upset. Thinking I would never feel better, never be able to have another child. I had a horrible urologist who was very unsympathetic. I changed my doctor, I got a urogyno, and a pelvic floor therapist. I started to feel better. I got off all my meds. I have gotten the go ahead from all of my doctors to start tying to conceive. I remember feeling so hopeless and never seeing an end in sight. I am a very impatient person and hate waiting so this was very hard for me. Hang in there. You will feel better. It's just trying to find the right things that work for you. I would, like the other posters said, get a second opinion. My first doc told me there was no hope, and in the end he actually told me there was nothing more he could do for me. It was a blessing because now I have wonderful doctors who are willing to work with me and treat me while pregnant. Don't give up.

[llwd]

I'm currently pregnant with my second child. My IC specialist, RE, and ob-gyn told me that it was okay to take elmiron and hydroxyzine while pregnant. I stopped the elavil when TTC. I stopped the hydroxyzine during the first trimester and resumed it during the second trimester because I had read there may be some risks during the first trimester only. My IC during my pregnancy with my DD was so miserable that I didn't want to risk going off of all the meds. I've had several pregnancies since DD that ended in m/c. During all the pregnancies after having DD, my IC did not get substantially worse than before becoming pregnant. Has your doctor only given you elmiron? I think in your situation, your ob-gyn and not urologist should have final say as to which meds are okay to take. Elmiron is a Class B, and there are many doctors that are okay with it. Sorry about your m/c, I know it must have been devastating. If you are having pain, I'd suggest a physical therapist that specializes in PFD. It might be very helpful to you in controlling the pain. Good luck!

[Judith56]

I am sorry for your loss and the situation you are in right now. On the bright side I can tell that I had two children my oldest turned 29 yesterday. I had severe IC and during both m pregnancies I actually improved. Of course back then there was no Elmiron or many of the other drugs or treatments that they now have. So I already was not taking anything, though I had tried much of what was available with no improvement. I talked to my uro as well as my gyn and they both told me to go ahead and try. I was lucky- no trouble getting pregnant and had both vaginal deliveries with no drugs. There is hope for you, especially since you were able to get pregnant. I am thinking good thoughts that things will go your way.