new here..have questions

[just1ofamillion]

Hi..I'm freshly diagnosed with IC, pfd, and pelvic congestion. I'm pretty upset about it, I'm only 21 years old. I've also had endometriosis for 4 years now. How do you cope with it? I mean, I kind of understand bc of dealing with endo for so long, but that was at least going to go away when I could get a hysterectomy.
Also I had questions about the diet.. for example, what about apple jelly or flavored chocolate things?

[statesboro]

I figured I would go ahead and give you a welcome. Ok, then. We have had several individuals around your age come on here since I have been coming on. Yep! You have found a good place, the website, where we do understand. Many people don't understand. I happen to be a male, by the way. I still have IC, but I don't have the other conditions mentioned by you. Regardless, I can understand your frustration. Besides, it is not uncommon to feel lost, alone, frustrated, and even confused while dealing with a chronic illness. Of course, we don't enjoy having IC at all. I don't know which chocolate flavored things, but chocolate does not help any. I have eaten some jelly without feeling like it had bothered me. I don't know. I don't have pain with mine. Ok, then. You should get replies from others as well.

[sailawaygrl]

I am sure you are upset. Rightfully so, you are very young to be dealing with all this. Do you have a good family or friend support network? My Mom has been my rock throughout my diagnosis and now my dealing with this. We live 300 miles from each other but I speak with her daily, which helps me just to have an ear to listen. Statesboro is right, we do have many on the boards your age. I am 40 but started dealing with pelvic issues at 18 and know the fear it can bring about your future.

On the diet questions, I know that many have a lot of diet sensitivities and many can get things calmed down with the diet by following very strictly then maybe in the future you can try small amounts of some of the risky foods. Me without chocolate, is not ever going to happen in some small amount!!

You didn't mention what treatments you are on. I would recommend reading the patient handbook and the IC diet, both you can locate from the home page, they will both give you a good starting point in understanding treatments and food to avoid.

Good luck to you and welcome to the "family"! Sorry you had to join, but you did find a good place. Just be sure to try to stay positive, in all areas of dealing with this. It can be hard but it will make a huge difference. We all have ups and downs though, obviously, but there is life with a chronic illness.

Sandra

[just1ofamillion]

I'm currently taking elmiron and a hormone/blood thinner. I'm also going to physical therapy. I just feel like my life is over..I don't have frequent urination right now, and hopefully not for some time, but I'm in college and have been looking forward to starting my career (in a lab nonetheless), but how am i supposed to do that work if I have to go to the bathroom every 20 minutes? I feel like everything I've been working for is worthless now. And the diet has been hard to follow, considering it knocks out almost everything I eat on a daily basis. I don't have time/funds to make everything at home. My grandmother has always been someone to talk to, but she's very religious and I'm not so much so when I talk to her about it, all she says 90% of the time is just to pray about it. My boyfriend has been there for me through everything, but he doesn't really understand how I feel. Everyone else I talk to tells me just to get over it and live my life..

[ICNDonna]

When I was first diagnosed back in 1975, I found that learning as much as I could about IC was the thing that helped me most. Some of the things I learned weren't very comforting, but somehow the researching helped me deal with my diagnosis. Now there are many more treatment options available and it does get easier.

Warm hugs,
Donna

[SharonA]

Don't give up on yourself yet. There are so many things available to us to help with symptoms. Like Donna suggested, keep on researching and learning every thing you can about these conditions.

I was so much older that you when I was first diagnosed, but like you, I thought my life was over. That I would never be able to do the things I enjoy. It is not so. After finding out what diet items caused problems for me and getting on a treatment plan, I live a very normal life. You have every reason to believe that it can be that way for you.

[OllieR]

Hi I'm 21 too! I hope I can give you some encouragement. I am still very up and down. I was diagnosed a year ago and for a full year I felt absolutely no relief from my symptoms (it was like the longest flair everrr). Then I had a break and it was great and now I'm back to being in pain and peeing all the time. So I guess that was not a very encouraging intro, but I'm getting to it!

Even though I have all the symptoms I've learned to arrange my time differently and reorder my life so that I can still go to school, have a job, and still have time for my friends. Yea, it sucks that with IC you have to work a lot harder than other people to do the same thing because you are sick all the time, but I have found that after a little while I was able to regain my quality of life. And of course I'm continually working with my doctor to figure out a way to make things even better. So about finishing up and getting a job, don't give up on that. I really hope you find something that makes you feel better, but I hope it's good for you to know that even if you don't, there's still a good possibility that you can learn to do all the things you love even with IC.

[breannavich]

i was diagnosed when i was 25 and it was quite a blow for me as well. it's scary thinking about how your life may be altered so much and these boards can be intimidating to read at first. but everyone truly is different and what treatments help you might not help someone else; same with foods and drinks. it took me about six months to get my IC to calm down. during that time i was afraid i'd never feel better and played around with my diet a lot. but after getting on amitryptline, eating clean and taking time off of work to rest i am doing much better. as far as chocolate goes for me, i can have a little every now and then and be ok, but i try to avoid it just because it's easier and as a chocolate lover, i'm not the best at only having a little :)

[Pjmsplace]

I too am newly dx. I wish I had known about this problem when I was younger.
I had surgery sept 2 09 for hysterectomy for possible ovarian cancer and endometreosis and bladder biopsy for possible cancer and found i have IC, but was told I was born with no membrane inside at all to protect the nerves, and that i have so many pin point holes in the bladder that it looks like a collander the leaking is burning my insides and has caused on numerous occasions an infection in my pelvic/abdominal cavity that was always misdiagnosed, once as mono and the other times always just a bladder infection and kidney infections that get so bad i end up in the hospital.
I was so glad i went to this Dr. he has really changed my life. I have always been in pain since i was 6 years old and it has been a long hard painful road.
Im so glad the Dr i see gave me this website and now know i dont have to suffer in pain. Thank You Jill for forming such a wonderfully informative place to go for help.

[just1ofamillion]

Thanks to everyone who responded to my post, it feels better knowing that I'm not alone. I started physical therapy for the pelvic floor dysfunction and found out that there's something wrong with my spine as well (I forget what it's called). The pain has gotten significantly worse with the therapy but I'm hoping that it will get better.
On another note, I did some research as some of you suggested and found out that pelvic congestion syndrome can cause, among other things, an irritable bladder. However, none of these websites expand on that symptom as it's not a common one. It made me wonder though if I actually do have IC or not. As I said earlier, I have pain in my bladder and was sensitive to the KCl test but I do not have frequent or urgent urination.
My question is if anyone knows anything about this..any answers would be appreciated.

[Lizalou]

for example, what about apple jelly or flavored chocolate things?

I would definately avoid apple jelly and chocolate. However i have already discovered althernatives, and i've only had IC for 2 months.

For jelly, i eat either Blueberrry or Pear Butter. Make sure they don't contain citric acid or lemon juice.

And for chocolate, try Carob. I eat carob chips with almonds and Annie's Honey Bunnies. It's like having a dessert! Also try carob powder to make hot drink. I put 2 teaspons of carob a splash of vanilla syrup and 2 teaspons of sugar into a to go mug every morning.

I know this website has flavored carob bars like mint, they are just a bit spendy and i'm trying to find them locally.

Occasionally i give in to my cravings, last saturday i had 1 piece of godiva chocolate and about an hour later i was in pain. Was it worth the pain...iuno.

[crkshnks79]

Thanks to everyone who responded to my post, it feels better knowing that I'm not alone. I started physical therapy for the pelvic floor dysfunction and found out that there's something wrong with my spine as well (I forget what it's called). The pain has gotten significantly worse with the therapy but I'm hoping that it will get better.
On another note, I did some research as some of you suggested and found out that pelvic congestion syndrome can cause, among other things, an irritable bladder. However, none of these websites expand on that symptom as it's not a common one. It made me wonder though if I actually do have IC or not. As I said earlier, I have pain in my bladder and was sensitive to the KCl test but I do not have frequent or urgent urination.
My question is if anyone knows anything about this..any answers would be appreciated.

Hi ! I have had Pelvic congestion as well as IC . I had pelvic vein embolization in order to "fix" the congestion , I had to see a radiologist for the surgery . I hadnt been diagnosed w IC yet when they told me that I had the pelvic congestion , so as far as I knew I assumed my bladder problems were apart of this like you are . But I did have alot of frequency , urgency , and pain ... I had classic IC symptoms . So after I had the embolization , I felt a lil less pressure for a bit , but then it returned because I do indeed have severe IC . My advice would be to talk w the doctor who diagnosed you w the congestion syndrome and explain your concerns , maybe your a canidate for the embolization and then if you DO get it done and continue to have bladder irritation , you would have a better idea of whats going on w your bladder and can pursue it from there . Im sorry you are going through all of this at such a young age , it is very overwhelming ! I just turned 30 , but have suffered from this and other health issues since I was your age , I know how hard it can be . It's a good thing that you found this website , they are full of info and advice on so many topics ! Please keep us updated and feel free to PM me if you want about the pelvic congestion ! Take care , :) Lauren

[maryla]

[ have pain in my bladder and was sensitive to the KCl test but I do not have frequent or urgent urination.
My question is if anyone knows anything about this..any answers would be appreciated.[/QUOTE]

Welcome........I just wanted to say that we are all so different as far as our symptoms. For many years I had mostly frequency and urgency and hardly any pain. And I have met a lady with IC who was just the same. I know of another lady with IC that has just pain also. No urgency or frequency. So, I just wanted to say it is possible to just have pain with IC.

Again, welcome you will find tons of love and support here.

hugs and blessings

[Diamic65]

Oh your so young to have IC. Ever since I was a little girl I had bladder infections. I was finally diagnosed in 2005. I had a bad bladder infection and could not pee for two days. So they ran test and found nothing. It was so bad my husband took me to the ER. They had to put me in the hospital because it was so bad. My dr sent me to a URO and they done the HYDRO and they told me I had IC. Thats what I was afraid of because my Mother has IC. I can remember her suffering with the pain and not being able to go places. But I'm still learning about IC today. Make sure you follow the diet and take your meds. This is the best place the ICN. It has helped me so much. Remember you can have a life with IC. I wish you lots of luck:pray:



DIAMIC65:dance:

[gialee]

Hi and welcome! :welcome: I'm new here and newly diagnosed too. I've had symptoms since I was about 10, but that was before anyone knew a lot about IC. Then it was just UTI after UTI after UTI.

I also had chronic pelvic pain, and I had a hysterectomy at age 29. I had already had my 3 kids or I wouldn't even have considered it.

From what I understand endo can irritate and IC flare up. I could be wrong, but that's what I've heard. I had ovarian cysts which caused flare ups.

I'm so sorry you are having to deal with this so young. That's awful!

If you want to talk about anything, I'm a stay at home Mom, so I'm home... PM me and I'll give you my chat info etc. I've been in your position...

Take care. :)