New diagnosed I suppose :( A little scared

[Sbtlove]

Hi I'm new here and I'm 24 years old. I was diagnosed with IC 2 weeks ago, based on my symptoms. I'm scheduled to go in for a Cystocopy with Hydrodistention on Thursday and I'm really concerned about that.

But let me back up a bit to when this all started. When I was 21, shortly before we were married. I got a really bad UTI. I really didn't know what it was and figured it would go away. I delt with it on and off for a month I guess and then it landed me in the ER. They diagnosed it as a UTI, gave me antibiotics and I was fine. I had never had a UTI or anything before that. Over the next 3 years I would have the occaisional UTI. Now about 4 months after we were married I was Diagnosed with IBS (Irritable Bowel Syndrome). No biggy it seems to run in my family. I was 22. Well over the next year I worked on getting that under control. Fast Forward a few more months. I found out I was pregnant. The pregnancy actually helped the IBS a lot, but I got a UTI every now and then which is normal during pregnancy. Fast forward to February of last year. I had my daughter, a week early. She had to be induced early. later 7 days later I landed in the ER. I was diagnosed with Pyelonephritis. They kept me overnight and pumped fluids and antibiotics in me by IV. Then I was on an antiobiotic for 2 weeks. I felt fine for a few weeks. But then every couple of weeks for this past year I was at the doctor presenting with symptoms of a UTI and Kidney infections. Only two times was there a Kidney infection. The rest of the time it came back negative. During this period I didn't have insurance so they doctors just kept giving me antibiotics until I could get in to see a urologist. Finally in December I got in to see a Urologist. I did have an infection that time. It cleared up but as always about 2 weeks later I had terrible burning and pain in my back and sides.

I went back to the doctor 2 weeks ago and He diagnosed me with IC. He put me on Elmiron and a bladder sedative (however I haven't been able to get the bladder sedative because insurance doesn't cover it and its pretty expensive) However I was able to get the Elmiron. I hate it, it makes me so sick to my stomach and its making my hair start to thin. Its also not great because I'm not a big meal eater, I'm a bit of a snacker. I'm a healthy snacker but I just can't eat 3 big meals a day, I break them up into smaller meals throughout the day.

Anyways That is where I am. Unfortunately I do have concerns for the future. This condition has already cost me 2 jobs, before I even knew I had it, because I was having to take off so much to go to the doctor. I'm not sure how I'm supposed to keep a job and finish school. They said there is no cure for this, so I fear I'll always be in pain. And we want to have another child in the next 2-3 years , but if I have to be on medication, thats not really an option. Best laid plans and all.

So that is about it.

I do one question the Cystoscopy with Hydrodestention. Does it really help at all? I ask this because money is tight and even with insurance it appears its going to be expensive. (I don't know I can't get anyone to even give me an estimate financial department is never available, and they won't even let me speak to the doctor about my concerns and questions about the procedure unless i make an appointment to come in and ask him 2 questions. Yeah I'm going to pay $35 to ask two questions that can be answered over the phone, and the nurses and office staff is so rude)

I'm considering cancelling it and finding another doctor before I have it done.

[Sbtlove]

Also the doctor made it sound like I would only have to be on the medication for a year. But after reading on here a bit I see people have been on Elmiron for 2-3 years.

Do alternative treatments help. I really don't want to be on a medicine long term if I don't have to. Especially one that makes me feel worse than the IC actually does.

[ICNDonna]

Some are helped by hydrodistention, but not everyone. You will very likely need to take medications on an ongoing basis --- whether they are alternative, herbal, etc., they are all medications.

If you aren't feeling comfortable with what you are being told, I think it's important to get a second opinion.

Sending gentle hugs,
Donna

[Sbtlove]

Definately something I was hoping would not be the case. I really don't like the idea of being on any kind of medication long term. I was put on a medicine when I was a teen long term, that wasn't even necessary ( due to misdiagnosis). I have had mild long term issues from it. So i don't trust any medicine. And I don't trust doctors either but that is another story for another day.

So I am to assume correctly unlike the IBS, this is not something that can be managed soley by diet?

I really know nothing about this illness but the doctor led me to believe that with a change in diet and this procedure I should be fine and within a year I shouldn't need the meds? Ofcourse EVERYTHING I've read online points differently than what I was understanding.
Ofcourse all my scans and stuff previously done have shown nothing wrong with my bladder or kidneys, but I guess when they do the scope they will see inside and know for sure if it is IC? Though they have already diagnosed me based on symptoms?

And my biggest concern, ofcourse is being able to have another child. Am I to assume that is even possible now?

I really hate this medicine. I feel so much worse now that I am on it, than I ever have this past year with these symptoms.

[Sbtlove]

One last question:

I don't know if you all will be able to give me any insight into this because my doctor couldn't even answer this.


Why is it that I was fine but then suddenly after having my daughter I all the sudden have this?

I mean I had the occaisional UTI, but nothing to serious. Then I had a baby and all the sudden I have a cronic condition. How was that related? Which also makes me wonder if it really is IC, which is another reason why I should probably get a second opinion.

Will holding off on the procedure, a few months, even a year hurt things? I'm not comfortable with having a procedure, especially after reading that they can rupture the bladder wall and cause more problems.

I think more than anything I'm just really scared. I've never had to have any kind of procedure in my life. I'm only 24 years old, this shouldn't be happening you know.

[bob04951]

Sb,
Don't be scared, there are many, many alternatives and treatments for this. If you truly have it, you will get a lot of info here. What works for one does not work for another. Certainly you can try alternative medicine, there is a thread here that addresses that. We find marshmallow root tea with a little honey and cream to be really soothing. Just be careful at the health food store, they sometimes don't understand what IC is. Maybe consult with a nutritionist who is familar with herbs? Think it cost us about $50 for an hour consult, and we told her exactly what we were coming in for and had a list of questions. She was helpful. So if you want to stay away from meds for now (but some can really help)...Read around on here, there are a lot of suggestions, and totally understand your fear, think everyone has been there. You will find your combo or "stuff" there are a lot on here who have gone into remission. There is hope, and there are young ladies on here your age, and younger. You might want to seek them out. Wish you luck, Jill, wife of Bob

[VickiB]

I think we all probably have that "it shouldn't be happening to me" feeling no matter what our age. But yeah, if you're young it seems especially unfair.

Like Donna said, some are helped by hydrodistension and some aren't. One of the confusing things about IC is that there really is no any one right treatment. What works for one person doesn't help the next. Some find they have to try a number of different options before finding something that helps.

So I am to assume correctly unlike the IBS, this is not something that can be managed soley by diet?

Some do manage their symptoms through diet alone, some need meds, and then there's all sorts in between. I have been doing quite well relying on diet, supplements and lifestyle changes.

And my biggest concern, ofcourse is being able to have another child. Am I to assume that is even possible now?

Many have had children despite having IC. Some, like me, even find their IC goes into remission during pregnancy and breastfeeding. It's a wonder I don't have a slew of kids!

Why is it that I was fine but then suddenly after having my daughter I all the sudden have this?

I don't know. But I do know that many of us here say our IC began following some sort of event. A surgery, accident, severe UTI, or even an extreme emotional trauma. You aren't alone in this.

I can tell this is a very confusing time for you. It's so hard to know what to do and when regarding treatments. I think it's good that you are here gathering information. In the end, I always say learn as much as you can, tlak with your doctors (don't be afraid to get a second opinion!), and then go with your gut. Unfortunately with IC there doesn't seem to be many completely right answers that work for everyone.

Hugs,
Vicki

[Sbtlove]

Thanks everyone. I've been doing some reading on the procedure and the condition and for now I've decided to postpone the procedure and get a second opinion. I mean they always say before any kind of procedure its best to get a second or even 3rd opinion. So I am going to do that. I've put a call into my primary doctor to see if he can suggest another Urologist. Unfortunately this specific urology office seems to be the only game in town. They are in all the surrounding areas.

I'm going to read up and learn as much as I can, so I can go to this next appointment prepared with all my questions and to make sure what I am doing is the best option.

Its scary and I'm confused as heck