24 & diagnosed with IC 6/1

[PipersMommy]

Hi! I'm BreAnn, a 24 year old stay at home mom of a little girl who will be 3 this month. I have endometriosis and Wednesday I was diagnosed with interstitial cystitis. I had the potassium test, and I am still in a lot of pain. It seems cruel to recover from the horrid flare the test while also in the throws of kicking a wicked caffeine addiction. As a vegetarian I am also struggling immensely with sticking to the diet. I am on day 3 with no cheats so far, but boy am I starving!!! They have me on Uribelle, Elavil, and of course Elmiron. I have been taking the Uribelle, and Elavil for a month now (my uro had such strong suspicions of IC, even before the test she prescribed) However, apparently there is a "manufacturer shortage" (thats atleast what my dr called it), and until I got a call today that they were able to fill the Elmiron I hadn't been able to find it. Well, imagine my surprise when I went to the counter and the lady told me it was going to be $510.12 for ONE MONTH! I will preface this by saying that I am not a stay at home mom because my husband and I are rolling in money, I am a stay at home mom (bc I think it's best for my daughter, but) mostly because for the last 3 years I have been in so much pain, so many surgeries for endometriosis that never seemed to stop the pain, and so many countless dead end doctors visits that I would've been fired before I even got started in most places. So, suffice it to say that there is no way we can come up with that kind of extra money. Our insurance appears to only be willing to pay $96 of the prescription, and I feel like I am doomed to be in pain forever. Wow, I guess I needed to get a lot more off my chest than I thought. Before I was diagnosed I had never even heard of IC let alone know someone who has it. I'm so thankful to have found this forum. It helps me not feel so alone. My husband is amazing and supportive the day I was diagnosed he showed up at home with lavender epsom salt bath, and a pad for the bottom of the tub. He encourages me to talk to him about it, but I can sense that he's super stressed about the financial burden this is putting on us and completely freaked out that I was in so much pain after the test so I feel that sharing how scared I am it would make it worse on him. It's been so nice just reading everyone's post. I've been staring at the forum for weeks, but I felt like when I posted on here it would become real, and I was a little shaky on that, but I look forward to getting to know everyone

[ICNDonna]

I know the diet can be a challenge --- even more challenging for a vegetarian, but it's possible. And now that you have a diagnosis, you can begin taking some steps to help you feel better.

Sending warm healing thoughts your way,
Donna

[Linda May]

[Jinny Jean]

24 too

Hi! and welcome! I am also 24 and have been suffering for about 6 months. At first I thought I was going to DIE by not being able to eat everything that I loved! I was having alot of trouble before I was "tentativley" diagnosed by symptoms. I have never had any invasive stuff (Other than a simple in office cytoscopy) and other eliminations- ie infection etc...I refused to get the PST.My bladder is already inflammed enough thanks! lol. I am on the anti candida diet, and have been for about a month now, so I do understand about the food restriction thing! A vegetarian would have an even harder time! So props to you for sticking with it!

I know Elmiron in SO much money.. My parents still have coverage for me until I am 25 but that is only one year! Hopefully I will have my own coverage by then! I have been on it for 3 months, and slowly thing have gotten better. My frequency is way down....

Anyways. Just wanted to welcome you and tell you that it gets better Takes time, possibly meds and DIET but gradually people seem to improve to a point where they can live thier lives

A good tip- Find an alkaline bottled water! I was just drinking normal tap water and never figured it could play such a huge role. I PH trip test my urine prob 5 times a day, and also test my water ( I try and keep my body as alkaline as possible) Anyways, the water I was drinking had a PH of 5! Ick that is SO acidic! So I immediatley went out and bought ESKA water. It has a PH of 7.8. This helped SO much!!! and I felt better right away!!!. Also another thing that helps sometimes is taking an antihistamine.

Hope you feel better soon!
If you ever wanna chat PM me!
Jenn xoxox

[PipersMommy]

I know the diet can be a challenge --- even more challenging for a vegetarian, but it's possible. And now that you have a diagnosis, you can begin taking some steps to help you feel better.

Sending warm healing thoughts your way,
Donna

Thanks Donna! I do feel so thankful for finally having a diagnosis I feel like the only way to go from here is up I appreciate the kind words!

[PipersMommy]

Thanks!!! I am loving it here so far! Everyone has been so helpful and nice

[PipersMommy]

Hi! and welcome! I am also 24 and have been suffering for about 6 months. At first I thought I was going to DIE by not being able to eat everything that I loved! I was having alot of trouble before I was "tentativley" diagnosed by symptoms. I have never had any invasive stuff (Other than a simple in office cytoscopy) and other eliminations- ie infection etc...I refused to get the PST.My bladder is already inflammed enough thanks! lol. I am on the anti candida diet, and have been for about a month now, so I do understand about the food restriction thing! A vegetarian would have an even harder time! So props to you for sticking with it!

I know Elmiron in SO much money.. My parents still have coverage for me until I am 25 but that is only one year! Hopefully I will have my own coverage by then! I have been on it for 3 months, and slowly thing have gotten better. My frequency is way down....

Anyways. Just wanted to welcome you and tell you that it gets better Takes time, possibly meds and DIET but gradually people seem to improve to a point where they can live thier lives

A good tip- Find an alkaline bottled water! I was just drinking normal tap water and never figured it could play such a huge role. I PH trip test my urine prob 5 times a day, and also test my water ( I try and keep my body as alkaline as possible) Anyways, the water I was drinking had a PH of 5! Ick that is SO acidic! So I immediatley went out and bought ESKA water. It has a PH of 7.8. This helped SO much!!! and I felt better right away!!!. Also another thing that helps sometimes is taking an antihistamine.

Hope you feel better soon!
If you ever wanna chat PM me!
Jenn xoxox

Thanks Jenn! It makes me feel better just to know that someone my age is also going through the same thing. I really wish I had found out more about the PST before actually doing it, because I think I would've wanted them to try another way! I had it 5 days ago, and 2 instills later I am still in a terrible flare. I am thinking due to the cost of the Elmiron I'm gonna try to find some herbal remedies, keep doing instills, stick super close to the diet (as hard as that seems to me right now), and staying on the other meds that they want me plus Prelief for when I wanna go out with friends. I am DEFINITELY going to try your suggestion for the alkaline water. Where can I get the testing strips?! Are you as freaked out as I am about sharing with your friends that you have IC?! They always accuse me of being "shady" or "Flakey" because I cancel plans more than most people, and the past 2 weeks I haven't even really felt like being on the phone or chatting and especially not hanging out, and I am running out of excuses. I am so afraid that they're gonna judge me or treat me differently altogether. Only my husband, my best friend since birth, and select family members that I've needed to call on for help with my daughter know what's going on. I don't know why I feel so ashamed, I am not overly secretive or the type of person to hold things in, but I can't bring myself to be open about it. Thanks for everything!

[Jinny Jean]

Hey your welcome!! You can get the testing strips at any health food store When I was first having trouble I was scared to tell people about my health... and frankly I was too sick to care about what anyone else thought to begin with. My focus was my body. But now as I have gotten better, I am able to say look, this is something I have, I deal with it on a daily basis, and you might not understand, but this is part of my "new life now"... I am different than I was, and I have to remember that I need to take care of my body. No I cant drink with you anymore, and no I cant always hang out all the time... I need to fix my body, and then I might be able to come out more... You need to tell your friends that this is something that "doesnt just go away" and they need to be able to respect your space and your body. Trust me you find out who your true friends are. The ones who know about this for me are only my close friends, my family and my boyfriend. They are all wonderful, and all of them understand.

Look at this as your body crying and telling you, you need to spend more time on YOU. Your true friends will stick beside you

[BKPoague]

ESKA water

Where can this water be purchased?

[Jinny Jean]

Hey!!! The water that I get is at the SHELL station (gas station) where I live. I have been to numerous shell stations and they all sell it as well ussually in cases. Other water that has a high PH is Evian and Figi water.

Jenn

[BiblioGrrL]

Fantastic! Congratulations to you!

[OllieR]

Hello! I just turned 23 years old and I have been diagnosed for about 3 years. Yes, it's hard to be young and have this disease, but it's also possible to have a fulfilling life, even if you stay a little symptomatic, believe it or not! My IC is severe, but I still hang out with my friends, go out with them sometimes (even if I can't drink), work when I can (freelance writer), and still manage to fit in the hobbies I enjoy.

Yes, I have restrictions like you. I can't hang out all the time and sometimes have to cancel, etc. And it's hard to tell your friends, but I found relief after I told mine because, like you, I was running out of excuses and wanted to let them know not to take things personally. I find my friends reacted one of two ways: they either swept in with full support (this one was amazing and unexpected) and offered to go to dr. appointments with me, bring me things I needed when I was really sick, came to my house to cheer me up, etc. or they just said they understood and didn't get mad when I had to cancel, but weren't necessarily keen on being around in the bad times. Both are OK and I've found that for the majority of people telling them goes OK. Just keep an open mind too. They do not have IC and there is no way they can know all the intricate restrictions and burdens of having it. Sometimes they may say something you don't like, and you have to brush it off.

You should look in the diet forum; there are a lot of ideas there! Plus you can make a thread asking for ideas for vegetarians. You'll prob. get both ideas and links to old threads that would be helpful. The diet is hard. You'll get it. Just remember not to be too hard on yourself, if you fall off the wagon, don't beat yourself up, just get back on. Even more seasoned ICers mess up from time to time!

If you need anything else just ask. You can PM me too. I remember what it was like to be newly diagnosed. The minute the dr. told me I had it and what all it meant to have IC I burst into tears lol. It's overwhelming, but you will find a lot of support here.

[brenda54]

newly Diagnosed!

Yesterday I had the cystoscopy done,I have been in pain since April!! It started with a burning on the lower right flank and would go up my right side and around to my lower back.Right now all I am on is hydroxzine,the burning seem to be worst at night,I am doing the diet but it is hard to know what to eat.Does anyone else have the burning in the side, my dr. does not think this would be from IC,

[flowerangela]

hello pipersmommy i'm angela. we're pretty close in location. i too am 24 and was diagnosed w/ ic feb 2011.i am unable to work at the moment so i understand the stress about your financial situation. its been a long fight with coming to terms with my diagnosis and trying out different stuff to get better but i am gradually improving in my symptoms using some alternative medicine and then western medicine as well. so,i am proof,it does get better. you feel like hell in the beginning but time heals all.find supportive doctors and others--a health care team of sorts and a counselor if you need one.also,cut all negative people or things out of your life.stick to the diet even when u dont want to cuz if u dont u pay for it later--i learned the hard way. learn stress management techniques like meditation and just relaxing and taking time out for yourself cuz yes we can get stressed just sitting at home and trying to get on with our daily life activities...its great that you have a supportive husband. the salts and bath pad were a great idea.pm me or add me on facebook if you ever need anything. <3

[PipersMommy]

Hey your welcome!! You can get the testing strips at any health food store When I was first having trouble I was scared to tell people about my health... and frankly I was too sick to care about what anyone else thought to begin with. My focus was my body. But now as I have gotten better, I am able to say look, this is something I have, I deal with it on a daily basis, and you might not understand, but this is part of my "new life now"... I am different than I was, and I have to remember that I need to take care of my body. No I cant drink with you anymore, and no I cant always hang out all the time... I need to fix my body, and then I might be able to come out more... You need to tell your friends that this is something that "doesnt just go away" and they need to be able to respect your space and your body. Trust me you find out who your true friends are. The ones who know about this for me are only my close friends, my family and my boyfriend. They are all wonderful, and all of them understand.

Look at this as your body crying and telling you, you need to spend more time on YOU. Your true friends will stick beside you

Ok so I decided to tell a few of my very closest friends at first just to see their reaction, and it was mostly positive. My life-long best friend has taken me to my instills twice, and she calls to check on me everyday! She and my husband have been my rock. Out of 5 of the people I consider my closest friends only one hasn't spoken to me at all since I told her. She has always been very very self-absorbed so I'm not all that shocked, but it still sucks. Oh well. good riddance to that one! After I spilled my guts to them I waited a few weeks to talk about it publicly on facebook. I was overwhelmed by the love I was shown from there. I feel much better about everything now because I feel like a huge weight has been lifted and I don't have to hide under my secret anymore. Thanks for encouraging me to put myself out there. You were right it really wasn't as bad as I thought! I'll PM you my real name feel free to add me on facebook I would love to have some IC friends on there