Was Diagnosed 4 months ago...nothing is helping. Need some help. :(

[lovemygolden]

Hi Everyone! My Name is Meghan, I'm 21 Years old and I was diagnosed with IC about 4 months ago (but I've had the pains for almost 2 years). I had a cystoscopy a month ago and ever since I had it I have been in excruciating pain everyday all day...nothing is working or helping me feel better.

I have tried the IC diet and everything seems to be giving me flares! I have been looking at this forum for months now...reading what other people eat and what they do, but nothing seems to help. I have even made trips to whole foods and trader joes. I tried only eating the foods in the ok column, only eating pears and drinking water and pear juice...but I am still in pain.

As for medications, I am on urelle 4x a day, nitrofuranton, and hyrdoxyine.
I have been taking these medications for 5 or 6 months.

On top of this, I was also diagnosed with Polycystic Ovarian Syndrome and hadn't had my period for 6 months until I took some pills to restart it a couple of weeks ago.

My father died a couple of months ago at a young age (53) and my life has been really depressing due to the this and also the pains I've been feeling.
It seems like for the past two years I have been in constant pain everyday. I had to drop out of college, haven't been able to get to work, and I never leave my house because I'm always in pain. I guess I am just looking for some ideas...some guidance, because I just don't know what to do at this point. Has anyone experienced anything similar with really bad pains that don't go away? What should I do?

Thanks.
Any help anyone can offer me would be greatly appreciated, because I'm starting to lose hope that I will ever be okay. :(

[Rainwilds]

Hi Everyone! My Name is Meghan, I'm 21 Years old and I was diagnosed with IC about 4 months ago (but I've had the pains for almost 2 years). I had a cystoscopy a month ago and ever since I had it I have been in excruciating pain everyday all day...nothing is working or helping me feel better.

Hello Meghan! I'm 21 too, it's feels quite young sometimes to be going through all this ... so I really feel for you. I had a cystoscopy to diagnose my IC, along with a hyrdodistention and baldder biopsy. Did you have these too? I remember I was in pain for at least a month and a half after that, and yes, nothing seemed to help! I was doing the diet properly and everything. But after a while (it seemed like forever to me), I started to make little progresses. It's still a long journey, but I was told I'd feel worse after that procedure for a while ...

... On top of this, I was also diagnosed with Polycystic Ovarian Syndrome and hadn't had my period for 6 months until I took some pills to restart it a couple of weeks ago ... My father died a couple of months ago at a young age (53) and my life has been really depressing due to the this and also the pains I've been feeling.
It seems like for the past two years I have been in constant pain everyday. I had to drop out of college, haven't been able to get to work, and I never leave my house because I'm always in pain ...

I'm so sorry to hear of all your sad news - you are going through so much, it's no wonder that you're feeling this way. I don't know a great deal of IC treatments etc. yet, other then what I've learned along the way myself and from this wonderful board. But I do know that you have to take it really easy on yourself. You are going through so much right now and your body really needs you to be in a relaxed state of mind. It's probably a blessing in disguise that you aren't studying or working at the moment (I had to quit both od these too, when I was diagnosed and I was very upset), because you are giving your body the optimum chance to recover. It might look really bleak at the moment, but in time, you'll start to feel better.

Take care,
Ally

[KarenAnne]

:welcome:Hi Meghan! I was diagnosed in Oct.08, & though not as experienced as alot of the others who have had IC longer, I do want to welcome you. This website was a lifesaver to me.

I am so sorry about the loss of your father, how devastating for you. I have learned from the others here, that stress can cause us to flare....and what could be a worse flare than what you have had to experience.

I'm also sorry that you have had to put your life on hold because of this crappy disease. I assume you've called your doctor about this prolonged flare & had a urine culture & all. There are alot of meds available, & many times we have to switch meds a few times. I have. Sometimes we even have to get second & third medical opinions.

About the pears; maybe they don't agree with you. We all respond differently to foods too. Try eating plain chicken, plain rice w/ some butter, & carrots. Food was a problem for me in the beginning, I stay very strict but I hate it.

So, switch out the pears, call your dr. to see if you can get different meds, rest w/ a heating pad, & give yourself time to grieve. You have had alot of loss. And vent to us, we all understand.

[lovemygolden]

Thanks so much for replying. I almost felt like no one would :confused:
Your replies actually made me cry because I have felt so alone these past 4 months and felt like no one understands what I'm going through.

Ally-It's good to know that someone my age is going through the same thing. I feel like a lot of people don't understand that I am constantly in pain. I feel like they get desensitized to it. My boyfriend of 3 years...hes such a good man, but how many times can someone hear "I'm in pain" before it starts to lack meaning? I couldn't get to class or work right now even if I wanted to...not with these pains.

Karen-I guess I didn't realize stress could be a factor for a flare. Obviously I am incredibly stressed. I also didn't realize about the pears...I guess I assumed everything in the okay list would be okay!~ I haven't contacted my doctor yet b/c I think he's going to assume its something with my diet. When I had the cystoscopy with the hydrodistention I felt pain for the first 2 days but then I felt better (except when I peed and it would sting really really bad) but now I feel worse again.


I also think maybe I could try new medication. I think I read on here that sometimes the meds can cause pain. Do you guys take anything I'm taking?


Anyway, I guess I could still be in pain from the cystoscopy, but he had told me that the pain would only last a week or two.


Another thing is I'm incredibly bloated and I have gained a lot of weight. I was always skinny, but now I'm like 20 pounds more than I should be. Has anyone experienced weight gain with the IC? It might be related to the PCOS, but I just figured I would ask. I haven't been able to wear any clothing besides big sweatpants, because everything else hurts!

Thanks for helping me out! :)

[KarenAnne]

I have bloating when I have an IC flare. I'm currently taking hydroxyzine daily, pyridium & levsin PRN, & meds for VV & PFD. I also wear sweats when I'm flaring. I'm seeing a new dr. tomorrow so my meds may change. I forgot, are you taking Prelief with your meals? The Prelief helps too, as does drinking bottled water. (I drink Deerpark, some drink Evian, do a search on old posts)

And you are not alone!! Vent to us about the pain. The support leaders on here have so much good advice, I asked so many questions in the beginning, & still do & they are soooo patient & kind. You are in the right place.

[Rainwilds]

... Ally-It's good to know that someone my age is going through the same thing. I feel like a lot of people don't understand that I am constantly in pain. I feel like they get desensitized to it. My boyfriend of 3 years...hes such a good man, but how many times can someone hear "I'm in pain" before it starts to lack meaning? I couldn't get to class or work right now even if I wanted to...not with these pains.

You sound exactly like me! I was constantly thinking the same thing. Unfortunately, some of what I though were 'true friends' were not, and they got sick of hearing about my ill health. I realised those friendships weren't worth keeping. However, it's at these times that you realise which people are the most true and caring in your life. I lost a lot of friends - but, my man (who is wonderful and very patient) has stayed with me the whole time I've been ill. I was sick for two years before I met him, and we've been together 2.5 years now. Trust me, I'm sure that if he loves you, he's still there for you.

Karen-I guess I didn't realize stress could be a factor for a flare. Obviously I am incredibly stressed ...

I know that stress is a HUGE factor in whether or not I flare. I'm sure it has a lot of reason as to why I have IC today. I'm doing alot of reading into it at the moment as I find that it would be vital information for a full recovery. What are you doing to relax? Try taking baths with lavender oil (if you can tolerate it). I do this often and I find that it eases some of my pain and makes it easier for me to rest. Are you getting much sleep or do you have to wake often due to voiding?

I truly hope you start to have better days soon ...

Take care,
Ally

[Rainwilds]

... Another thing is I'm incredibly bloated and I have gained a lot of weight. I was always skinny, but now I'm like 20 pounds more than I should be. Has anyone experienced weight gain with the IC? ...

Yes and yes! I sure have, although it's mostly concentrated to my belly. I always feel bloated and look like I'm 3 months pregnant!

[OllieR]

I guess it is impossible for me to know exactly how much pain you are in, but as with everyone here mostly I have pain too, but it actually helps me to get out of the house, which you said was difficult, and I'm sure it is! But it may help to try even little things and see if it helps. If you are able to get out and about more it may help brighten your spirits and relieve some stress :o) I have not found a suitable treatment yet for myself, but some of the things I tried did make me worse, and I felt better when I stopped them, so that is a possibility.

[lisabar36]

Hello, I am sorry your feeling so frustrated. I was diagnosed in 99, but I had problems all through my 20's, I always thought I had a uti. I went years with no treatments because when I was diagnosed, they gave me Elavil, atarax, elmiron, all at the same time in high doses and I remember waking up feeling like I was going to pass out, I also at the time got really bad headaches from Elmiron. It wasnt until a few years ago I went to a doctor and he started me back on the meds one by one on the lowest doses, and then increased gradually, and this time around, I tolerated the Elmiron just fine. I had bladder instills that really helped me right after that, and thats when I realized there is hope. I also found this site and its full of so much support. There are treatments out there, sometimes it just takes time to find the right combo of what is going to work best for you. I am also in therapy now for IC and PFD, which I feel in the long run is going to help me alot. I went to numerous doctors until I found one that really listened to me and wanted to help me try different things to see what works. I remember having the feelings of feeling alone, always being in pain, and crying alot. I also just lost my father, and I have to say the stress really made my pain come back, so I know stress is not good, although sometimes hard to prevent. Hang in there, this site really has alot of info and support and we are all here for you and here to support eachother. I am very sorry to hear about your father.

[ICNDonna]

I'm so sorry you're having a difficult time. I know stress can be a real problem for me. You might talk with your doctor about trying something to help with that.

I just hope you feel better soon.

Donna

[SharonA]

I just wanted to send you a warm :welcome: to the ICN and tell you that I am so sorry about the loss of your father. (((Hugs)))

[NancyB]

Dear Lovemygolden -

I am very sorry that you have IC and that you lost your father. You have a lot on your plate. No wonder you feel so rotten.

Some tips that might help. You might want to talk to your doctor about Elmiron. A lot of ICers find that it helps their IC. You might be one of them. However, you should know that it can take many months to see any results, but it is probably well worth it to give it a try. In addition, you want to be sure to stay well hydrated. Concentrated urine causes more pain. Drink ONLY spring water with nothing added. Evian, that is on the OK list, is not tolerated by some ICers. If you are on it, some other type of bottled water, well or city water, some of your pain, etc. could be due to that. It is important to remember that you are more likely than not to find a regimen that helps you with your symptoms, it just will take a little time and some trial and error.

I assume your IC name comes from your love of Golden Retrievers. Do you have one? We used to have two - Sam and Samantha. Love and miss them with all our hearts.

Hope this information is helpful to you.

NancyB:)

[sickofmybladder]

Lovemygolden -

Welcome!!!

My daughter is 21 also - and we both have IC - I would definately try switching to a very bland diet and see how you progress from there. (Warning - many spices can flare me - black pepper is especially bad for me). Also - I agree with an earlier comment - even though I can tolerate some foods I couldn't in the beginning - I can ONLY drink natural spring bottled water. If I stray it is an instant flare. I also get the ic stomach - as your flare gets under control - hopefully that will too.

I hope you are sharing with your doctor that you are still having problems - I would suggest that you review a list of "normal" meds (like the Elmiron etc.) and make an appointment to see if he or she can switch things around a bit to see if you can be more comfortable.

I'm so sorry to hear of your loss - and that you have so much going on right now - please let us know if you have any questions about anything you find on the site.
(((Hugs)))

[jaisa]

Have you been put on Elmiron?? I get the bloating when in a flare too. If you do try Elmiron I found I had to take it out of the capsule and dissove it in water or else it gave me more bloating ---Good Luck --J:)

[VickiB]

Hi Golden,

I just wanted to add another :welcome: and say I'm so sorry about the loss of your Father.

Vicki

[lovemygolden]

Dear Lovemygolden -

I am very sorry that you have IC and that you lost your father. You have a lot on your plate. No wonder you feel so rotten.

Some tips that might help. You might want to talk to your doctor about Elmiron. A lot of ICers find that it helps their IC. You might be one of them. However, you should know that it can take many months to see any results, but it is probably well worth it to give it a try. In addition, you want to be sure to stay well hydrated. Concentrated urine causes more pain. Drink ONLY spring water with nothing added. Evian, that is on the OK list, is not tolerated by some ICers. If you are on it, some other type of bottled water, well or city water, some of your pain, etc. could be due to that. It is important to remember that you are more likely than not to find a regimen that helps you with your symptoms, it just will take a little time and some trial and error.

I assume your IC name comes from your love of Golden Retrievers. Do you have one? We used to have two - Sam and Samantha. Love and miss them with all our hearts.

Hope this information is helpful to you.

NancyB:)

After my father died, I drove 5 hours to New Jersey to get a golden retriever puppy! My brother also got a puppy from the same litter so we have two brothers :) He's adorable. A lot of work, but hes adorable. Luckily my boyfriend has been walking him everyday, because like I said, I am unable to walk around or leave the house without incredible pains. His name is Simba and he gets along with my ragdoll cat :) I'm sorry about your loss with your dogs. I know how hard that is.

[lovemygolden]

who has been replying to my messages! Thank you SOOOO much. I really appreciate it. I can't even tell you all how depressed I have been for the last 5 months. It's been really really hard.

Are all of you taking Elmiron? I guess I have to try switching my medications. I read on another post that urelle can sometimes cause pain. I also read people usually only take it when they are having "flares." My Urologist has me on it everyday 4x a day. I actually didn't take it yesterday and I felt a lot better. It was really weird.

What other meds do you guys take? I was wondering what you guys take for pain. Do you get prescribed painkillers like vicodin or percocet? I received a bunch of those after my cystoscopy a month ago and they really seemed to help when I was having pain. I am guessing it is hard to get a doctor to write a prescription for these since they can be addicting?


Also do any of you have the problem I mentioned with the bloating and/or gaining weight? This is something I have been struggling with because I can't fit into ANY of my clothes. I can only wear sweatpants. I'm barely eating too so I really don't know what could be causing this. Any ideas? I think I mentioned before that I was diagnosed with Polycystic Ovarian Syndrome. I hadn't had my period for 5 or 6 months and then my endocrinologist gave me some meds that gave me it a couple weeks ago.


I bought a bunch of groceries today. Chicken, rice, bottled poland spring water. I was thinking of just sticking with chicken and rice (even if its boring)


I used to drink a lot of diet coke and then I switched to pepsi one since it has splenda and not aspartame. I have not been drinking it, but my doctor said rootbeer is okay with lots of ice. I really don't think my pains are caused from the diet soda at all because it makes no difference if i drink it or not.


Anyway, Thank you all so much for helping me :0 :angel::cat:

[lovemygolden]

I have not yet tried Prelief. Is this something I should definitely try? Can I buy it at CVS? what exactly does it do?

[Natsy]

I know what you mean about the bloating and weight gain. My bloating gets really bad and it comes on so quickly if I am having a flare.

I found I really put on weight after my operation for endo during which I had a cysto done too. My stomach was so bloated. The rest of my body was quite slim so people (rudely) asked me if I was pregnant sometimes! I couldn't wear any of my lowslung skinny jeans as the were too tight on my bladder. I am on a diet now and have lost most of the weight but it is tricky - many low fat things (sauces, dressings, soups etc) are quite acidic.

The fact that the pain makes exercise so difficult certainly doesn't help and losing weight is tough at the best of times. Dieting can be even more difficult if you are already restricted as to what you can eat for the IC diet.

I think there is also a diet for PCOS. I believe that you are supposed to limit your carb intake. This might be a bit of a challenge for you right now with everything you have going on.

If my stomach is sore I wear tight black footless leggings and a long, loose tops that come past my butt. Or even a short dress over the leggings. Lots of people where I am wear this anyway at the moment. It is comfy and doesn't look frumpy.

I hope that you find something to bring you relief soon. Until then, I hope that things start looking up for you in general.

x Natalie

[NancyB]

Dear Lovemygolden -

A puppy, how wonderful. I remember our goldens as puppies as if it were yesterday. That was back in 1980. They were so much fun and the lights of our lives.

In answer to your post about what my situation is with meds, etc., you can read my story under the thread, Success Stories from December 2007 if you want to know more about me and my IC.

Hope you find medications that work for your IC very quickly, enjoy Simba, and remember that in all probability you will find things that work for your IC to let you get on with your life.

Make sure to post if you have questions that the group can answer. There is a lot of experience here.

My best to you.

NancyB :)

[Tuckersmom]

I know Prelief is available at Walgreen's, not sure if CVS has it or not. If you find that it helps, you can buy it online for much less than you'd pay at a local store.

I'm so sorry for the loss of your dad. (((Hugs)))

[dee106]

First *HUGE* hugs to you for your Dad...I am sure many *GREAT* memories...keep them close to your heart when you feel the pain.....I was diagnosed in October 2008 and here it is March and every day I am still eating only chicken, broiled carrots and brown rice.....when I try things on the o.k. list they don't work (everyone is different) I can't even add broth to make chicken soup *UGH*.....lost 20 lbs (would rather have the weight) it's as if you wake up one day and your stripped of everything.....I take Elmiron, Urella and Vesicare daily...one day I had a craving for chocolate - FLARE, had a sore throat and had some icecream for my throat *FLARE* green beans *FLARE*, peas *FLARE* so alas still eating the chicken, carrots, rice...I have been good for about 1 month, someone here suggested baby food, I did pick up the Gerber's pear juice and have not tried it yet....(yes afraid of a flare)....but I know I need to keep trying....my nutrients are so low I am noticing my skin, hair ect....I don't know how long I can sustain myself on the chicken, carrots and rice.....I guess we are all different.....my heart goes out to you....I had the hyrdodistention and baldder biopsy and was originally told I would just need 1 day off from work to rest..well a week later I was able to get to work (personally) will never go that route again....my urologist does not believe in pain meds...and when I asked him if he had IC or ever a bladder infection he said *no* and I said then you have no idea what I am going through....then again when I got it I was handed 1 brochere and all my knowledge has come from this site....on bad days I take up to 20 Motrin a day, I know this isn't good but I need to work and support myself and son....hang in there...I care....maybe try a baby food, no preservates or funky stuff in it....I wish you well, wish you always.....always post...were here for each other in this *thing* we call IC.....~Dee

[mbhbarb]

Hi,
I am sorry to hear about the loss of your father and about your struggle with IC. Times like this life can seem pretty difficult. I, too, had many things, including IC, hit me at once and suddenly my life seemed like one big battle. My sense of well-being was threatened because everything felt out of my control. I was afraid to go out because of urinary frequency and pain, but the more I stayed at home the more I focused on how much I hurt, and I think that made things worse for me. I’m not saying you feel this way, but I was angry at my body for letting me down. Yet fighting with myself made my pain worse; it was as if the source of my pain became the center of my consciousness. My life was ruled by IC. At the same time I was working through the loss of my father and was still grieving the loss of my husband two years before, and I was recuperating from major surgery and struggling with complications from that. It seemed like there was no peace for me.

I have been fortunate. I found this website and through the support and wisdom of the people who share their experience here, I started changing the way I was responding to my situation. I began to go places again and learned how to have a good time even though I was hurting and needed to visit the bathroom frequently. When I wasn’t focusing on it so intently, my pain was reduced because I was more relaxed and I was distracted. Also, at least as important, I learned to quit fighting with my body and instead transitioned to an approach of nurturing my body. I got many great ideas of how to do this from people on this website.

A note about diet – I agree with others who have responded to you; it may be wise to start very conservatively and work out from there. I had to do that. I ate only the blandest, most harmless foods to begin with and I did not drink anything but purified water (juice is very concentrated and I could not tolerate it). Slowly, one item at a time, I began adding in other IC “safe” foods to see what I could eat. If there wasn’t an adverse effect after a couple of days, I would try a new item. It’s been two years now and I eat a pretty diverse diet, but I still stick closely to the IC guidelines. I’ve just now started drinking a little juice once in awhile, usually watered down by half with purified water.

Hang in there, things will get better. It may sound gratuitous to say this, but it is certainly true for me, that you will become a better person for making your way through these struggles. It’s not enough, probably, but at least there is some payback for adversity. You sound like a thoughtful, caring person. I hope you soon find some comfort physically and emotionally.
barb

[jenjen05]

Hi Meghan,

I'm sorry to hear your having such a rough time. I've been dealing with this ridiculous disease for 5 months now, but was just diagnosed officially Feb 26.

I find I can only tolerate Publix Purified Water and Zephrahills spring water. Celestial Seasonings Peppermint tea with some honey works for me as a sweet hot drink as well.

The important thing to remember is everyone's different.

I am currently going on day four of no pain and no symptoms at all. I'm drinking only Publix Purified Water, the peppermint tea, taking Prelief with every meal (I got mine at CVS) and taking two capsules of Cystoprotek everyday. I can't explain it, but I'm even eating horrible foods. McDonalds plain cheeseburgers and fries and Wendy's plain cheeseburges and fries and I've gone out for steak (no seasonings!) and baked potatoes and veggies. (Can you tell I never cook for myself? lol)

By no means of course do I condone such an unhealthy diet. You should eat healthy if you have the time to do so. What works for me, won't necessarily work for you. And I should eat way healthier. My job however doesn't lend me much time to spend cooking. I'm 24, so I thought it might help you to hear what I'm going through and what's working for me.

I can definately tell you that doing my best to follow the IC Diet as outlined on this site has helped a lot. As well as asking questions in the diet section of this forum. Everyone is very helpful.

I wish you the best of luck in this journey. Because it is a never ending journey. It's all trial and error. And unfortunately, the error happens to really stink when you have IC.

Feel free to message me if you want to talk. I'm sorry to hear about all you've been through.

[BT2008]

I have not yet tried Prelief. Is this something I should definitely try? Can I buy it at CVS? what exactly does it do?
Hey Love,

Welcome to the ICN!! You have come to the right place!

When I went looking for Prelief I couldn't find it at any local drugstore, but I was able to ask the pharmacist at Kroger and they special ordered it for me. It is made by the same people as Beano (I think).

But--I have since read somewhere that you can also buy it here at the ICN Shop, which also helps support this forum (I think). So, when I get close to running out, I am going to order it from here next time.

And, yes--even though I don't take it every day--I think it probably does help whenever I take a chance on a "maybe ok" food/drink--and I will certainly use it if I am ever tempted to take a chance on a "no-no" item.

~Beth

[katie87]

HI meghan! I am 21 as well, and I have lots of pain as well. I recommend a heating pad, i use it pretty much every day, i also recommend physical therapy...

[Rocklandgal]

Hi Meghan,

I am just repeating alot of the things that other people here are saying. But, I think if you see that there are plenty of us out there, it might help you to feel more hopeful. I am pretty new to this site too, even though I have had IC for about ten years. I am finding this site to be a life saver. Nobody will doubt you or laugh at you. Everyone will try to help you. The thing that amazes me about this is how it is so different with each person. That is why it is so hard to pin down. Just a sip of something will cause severe pain in some. Others eat or drink it by the ton, and it does not bother them. If it were only as easy as being told "Don't drink orange juice, and take this one pill and you will be fine". I have had some success with diet, but am still trying to perfect it. As others have said, stress can be a very big cause. And it can be really hard to control stress. Sorry about your dad. If that isn't stress at your young age, I don't know what is! I lost my mom fairly recently, but I am alot older than you. You just gotta believe that it will get better. Keep coming here for support.
Karen