Announcement

Collapse
No announcement yet.

Does it always get worse?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Karabie
    replied
    Re: Does it always get worse?

    Jinny, I would be glad to talk off the boards. Can you PM me your name and I'll find you on FB

    Leave a comment:


  • Jinny Jean
    replied
    Re: Does it always get worse?

    Thank you so much everyone who posted!!!

    I do feel a little better, it is nice to know that things can work out and be fine...although I know lots of us have a new normal... ( I know I do!) it seems like a vast majority of us have found ways to keep IC in check and carry on with the positive parts in life. I like to think of it as a condition, and NOT a disease, in fact I NEVER consider it to be that. I look at is something that is a little off with my bladder, who gets cranky, but quietens down with the right support lol...

    Congrats on your pregnancy Karabie! I hope things turn out well for you! Please keep me updated! I would love to know how you do! Of course I wish you REMISSION or at least very manageable symptoms! How exciting

    Sylvieamber, I am so glad that I was able to give you hope! It feels like a long time that I have been coming back and forth on to these boards... I was helped by quite a few women when I first came on here! VM and Massagedoula were ones that pop in to my mind, but honestly there were SO many that helped to raise my spirits, and I always wanted to be like them... so I vowed that when I was doing ok, I would still come back to the boards and give hope.. something that I have continued to do

    I feel like lately I have been such a basket case trying to soak up anything I can find that could give me a clear picture about what I am in for! I know we are all different...and we all have IC from different origins, but quite a few of us seem to have very similar symptoms, especially related to hormones. I only flare when I ovulate generally now, or when I drink alcohol. I feel great when I am on my period and I feel great when I am coming off my period on to the two weeks before I ovulate. My bladder always usually feels fine now, but I can tell you that the first week after my period my bladder is SO happy. I think that is when your body has the highest estrogen? Seems like my body likes estrogen? No idea really. Pregnancy hormones scare me, that is all I have to say... hehe.

    Everything I have read it mostly says that the first trimester is hard.. and that I expect.. (especially from the increase of HCG that takes over, it is probably shocking all of our bladders) but it would be nice to be able to love my belly, and not feel discomfort all the time. I wish and pray that I have some good relief for at the very least part of it! If I must have symptoms... I hope they are manageable...

    I am so glad Sylvieamber that you were able to go back to how you felt before, and hopefully with the Elmiron you will just keep getting better and better. It took a couple years for me to get to where I am, so it makes a huge difference the longer you are on it. I don't expect that I will ever have a "remission" at this point, meaning no meds and no symptoms ( I would welcome it WHOLEHEARTEDLY of course) but as LONG as I can have a continued and stable "meds remission" or what I call my remission I suppose... I am good with that, if I were to be realistic. If my Elmiron is what works then so be it. My comfort and sanity is worth every penny I spend on that drug.

    With taking Elmiron, honestly, my bladder doesn't bother me at all anymore, even when it is crabby because I know it will pass, and it always does without a fuss eventually, things like being constipated, ovulating, drinking a massive cup of coffee, or a glass or 5 of wine... and stress... generally that is when I flare for a few hours, but no more than that. If I had to live with that I would be just FINE. Also, odd side note. My bladder LOVES when I do exercise.. lol.. if I am having discomfort of any kind or burning or frequency that is really annoying me, I go for a run. Poof its gone. Sometimes it comes back, but generally it makes it go away totally. I hope that this is the same with pregnancy. I like to think it is because of the increased blood flow in my pelvis, and endorphins.

    I feel so thankful that I feel good, and that Elmiron works for me. I also have taken Atarax too, when I really flare which is NEVER anymore... but that did help back when. What were your births like? I can imagine it was the best thing in the world. I really cant wait to have that I hope that I can get pregnant easy My partner wants two and so do I ... so I am fairly committed to two pregnancies, hopefully.

    It gives me hope that a lot of the women who posted during pregnancy a handful of times and even the ones who posted a bit more (and trust me I seriously have read EVERY thread in the pregnancy section thus far) lol... they do not come on anymore... or very infrequently now........ does that mean they are fine? Maybe? Maybe not.... but I like to think that there is a VERY good chance they are great and have managed just fine... I understand that people in pain post more, and sometimes I let that over take me to the point that I am crying as I read the boards... similar to when I was first diagnosed feeling so helpless. I try and put it in perspective for myself.

    Thank you so much for listening to my rant and sharing with me. Sometimes I find it really helpful to talk off the boards, so Sylvieamber and Karabie and whoever else, if you are in to chatting by email or Facebook I am totally in to that!

    Jenn
    Last edited by Jinny Jean; 12-14-2015, 07:06 PM.

    Leave a comment:


  • Karabie
    replied
    Re: Does it always get worse?

    I sometimes wonder if I don't have OAB as well since I sometimes just seem to "leak" constantly. Not a ton but enough to notice. Gross. I know I can't take OAB meds during pregnancy for sure, but I've been on Myrbetriq for the past 5 weeks and it seemed to have started working a bit. They say it takes 7 weeks to notice the real difference.

    It seems like you have a real handle on your symptoms and are able to really enjoy your life in spite of IC.
    Us IC moms have to be tough!
    Thanks for sharing!

    Leave a comment:


  • sylvieamber
    replied
    Re: Does it always get worse?

    I do avoid stuff like tomatoes, chocolate and citrus and I know I will never drink coffee again but I have never been that diet sensitive and could never determine what foods bothered me. Holding it isn't bad for me, I guess you are right, the elmiron makes it less irritating. By 300-400 I am very uncomfortable though, I have OAB as well and the urge gets crazy, sometimes I almost loose control and pee myself. Sometimes if I am really distracted by TV or something I can make it to 500ml.

    Leave a comment:


  • Karabie
    replied
    Re: Does it always get worse?

    Really? How does holding it not drive you crazy? I can also hold it but it's so uncomfortable and distracting. I only feel relief when my bladder is empty. Sometimes this lasts for 1 hour, sometimes 2. I'm guessing the Elmiron makes it less irritating? Do you follow the diet?

    Leave a comment:


  • sylvieamber
    replied
    Re: Does it always get worse?

    Hi Karabie,

    Congratulations on your pregnancy!

    Yes, just like you on reflection I have had IC symptoms on and off since my teens but it - as you say, turned chronic after my 1st pregnancy. Frequency is the least of my problems now I go 5 times a day but I still get urges sometimes. I have worked out that on medication I start feeling the need to go at 150ml and can easily hold it to 300ml. Time is not a factor I can hold it for hours if capacity is less than 300ml. For me it's all about the amount in the bladder - even when I flare. I flare about 1x per month and I get pain and stinging after peeing this can last for a few days. The medication started working for me after 3 months of being back on it. The medication ensures I get less flares and have no feeling in my bladder until it hits 150ml even then it isn't bad until 300ml.

    Leave a comment:


  • Karabie
    replied
    Re: Does it always get worse?

    Sylvie: Wow, Your story is very interesting to me and gives me so much hope. I also believe I've had IC for a long time and it turned chronic when I first became pregnant this time last year. I had my baby in August this year and was properly diagnosed in November and began meds. I have been starting to feel a bit better. Well, I found out recently I am pregnant again! Wow! Not our plan but it's still a blessing. I'm hoping to stay on my meds ( especially Elmiron) through this pregnancy, with the go ahead from my doctor of course. I feel pregnancy hormones exacerbated my IC so I was looking forward to letting those level out again. No such luck there! May I ask if you felt that Elmiron ever kicked in to help with the frequency/urgency? Those are my main symptoms.

    Jinny: I wanted to wish you all the luck and blessings on your decision to have a baby! You will be fine; getting through IC will make pregnancy feel like a piece of cake! I know that with my first pregnancy when my symptoms came on I was totally frightened, anxious, and freaked out!! No one could tell me what was wrong with me. It really messed with my head and took away from my experience. Now, going into this pregnancy I feel more at peace because I know what I'm dealing with. Be brave, you will never regret it! Especially after you hold that baby for the first time!

    Leave a comment:


  • sylvieamber
    replied
    Re: Does it always get worse?

    Hi Jenn,

    I'm really happy to be able to reply on this thread to you as I have read so many of your posts and they have given me a lot of comfort in the past.

    Congratulations on thinking about having a baby, it's a very exciting time for you and I'm sure a very anxious one as well. Although I can't say with certainty (no one can) I feel positive that you will be OK during pregnancy because from what I have read from your posts your flares sound a bit like mine and you think they are hormonal. Your bladder will get a nice rest from your hormones when you are pregnant and the other hormones you get when pregnant will make you feel wonderful (I know they did for me - I was in great spirits through my pregnancy, which made dealing with my bladder a lot easier).

    For me, as you can see above I was not completely in remission during pregnancy BUT I was able to handle the extra frequency and occasional mild pain (most women get some bladder issues in pregnancy anyway). The 1st trimester was the worst but after that things were pretty easy. I was really pleased and proud that I could go off all the meds.

    I had a sort of remission for 4 months afterwards with breastfeeding, but I think this was because I made hardly any pee. After this my symptoms came back and I went back on all meds while continuing to breastfeed around taking them. They started working again pretty quickly by 3 months I think.

    Now my daughter is nearly 2 and my symptoms are pretty stable. I have never had a true remission and I'm not sure I ever will. I still get the occasional bad days but I can still go to work, play with my kids and get on with life. Most of the time I feel OK. I feel no worse now than I did before my pregnancy.

    I say go for it Jenn, I'm sure elmiron will work again and you never know, you may actually feel pretty great through your pregnancy like I did. My kids are definitely worth it. There is more to life than IC, don't let it deprive you of a family.

    Good Luck!

    Sylvie

    Leave a comment:


  • Jinny Jean
    replied
    Re: Does it always get worse?

    It is so crazy to me how long ago this feels! I was the original person who started this thread.

    I was no where near having a baby then.. but I am now.. and I keep looking to the boards to try and reassure me that I will be ok. I have to say that some days it makes my fears much worse. I know that most people post when they are in pain.. so I cant take it all as fact but it makes me very worried. I have been posting in a few of these pregnancy forums lately.. looking for hope. Everyone who commented on this thread now, are you ok? Your babies must be growing up! I am trying in the next year or so... and I am just trying to prepare myself as best as I can with all the information I can find.

    Im glad that some people who have had good experiences have posted on this thread and others... I wish more did to give hope.

    How can I stop worrying? I don't expect remission, but I just want to know that I can get back to where I am now with doing well with Elmiron... I cant wait to be a mom. I have always wanted to be pregnant for as long as I can remember.. and now I might actually get to be a mom in the near future. It seems surreal.

    Please anyone have more good stories? Realistic ones? Not everyone goes in to remission, but I would settle for manageable with good day and bad days if I couldn't HAVE remission!

    Jenn

    Leave a comment:


  • Kporter655
    replied
    Re: Does it always get worse?

    I love you for saying that hahahha !!! At this point If any one says i will probably feel better I cling to it even though I know your not a doctor or anything im just happy you think I will feel better lol

    Leave a comment:


  • sylvieamber
    replied
    Re: Does it always get worse?

    Originally posted by Kporter655 View Post
    I'm just hoping and praying that after the baby and uteris is off my bladder and the hormones are calmer that things will start getting better do you guys think so ?? Please tell me after pregnancy things will feel better !!!
    Yes, I'm sure things will get better for you. especially if your Dr has said your uterus is large, it's stands to reason it is pressing on your bladder. All the best

    Leave a comment:


  • Kporter655
    replied
    Re: Does it always get worse?

    I'm just hoping and praying that after the baby and uteris is off my bladder and the hormones are calmer that things will start getting better do you guys think so ?? Please tell me after pregnancy things will feel better !!!

    Leave a comment:


  • sylvieamber
    replied
    Re: Does it always get worse?

    Hi again,

    Yes Bladderella is right OAB is a different problem to IC. I am one of the lucky ones who has both! Right now my IC is pretty well under control so the OAB is now showing its self but I do think it did get worse after baby number 2 as I never had to take an OAB med before. What happens is I am feeling totally normal them BAM I have to pee right now or I will wet my pants. It's annoying but with vesicare the urgency isn't as strong so I can hold it and it goes away.

    Yes, the feeling of needing to go all the time has got better but after I had the baby. One thing that really helped was breastfeeding as when you breastfeed you hardly make any pee, there were some days I only went 2-3 times.

    Leave a comment:


  • Kporter655
    replied
    Re: Does it always get worse?

    But do you feel like your bladder and the feeling of needing to go all time got better after you had the baby

    Leave a comment:


  • Bladderella
    replied
    Re: Does it always get worse?

    OAB is Overactive Bladder syndrome. The symptoms are very similar to Interstitial Cystitis and some urologists have a difficult time determining which one a patient has.

    Leave a comment:

Working...
X