Miserable

[redsoxfan]

I've had bad IC symptoms since Dec 08 although I've had problems on and off since 04. I got pregnant in May (yay!) and the first trimester wasn't too bad but things have been gradually getting worse with my bladder since about 16 weeks (i'm now 24 weeks).

Basically, I don't know how to cope. i'm crying a lot from the pain. Then I'll have a day where I don't have so much pain just irritation and frequency and it's like I'm a different person - I feel so happy that I'm pregnant and have hope for the future.

But then the pain comes back - and I can't sleep and I'm in tears.

I'm struggling to cope with work - but really need to stay at work so I can get maternity leave. I feel like a failure as a mother already because I'm not giving my precious baby the nice, calm environment I want for her.

My relationship with my husband - which has been the best thing in my life for 10 years - is under huge strain. He doesn't know how to cope with the wreck I've become. I don't go out very often I can't cope with housework. He thinks I'm rejecting him b/c we don't have sex (I WANT to have sex, I WANT to be without pain, I WANT to feel normal). I feel as if he's going to leave me.

Most of all I just want my baby to be OK but I have 16 weeks to go and I know as the baby grows the pressure on my bladder will get worse.

The obstetricians have given me codeine for when it's really bad but keep saying 'try not to take anything' so I feel like I bad mother when I do.

I don't know if anyone is out there who can help me to feel that there is going to be an end to this?

[Maylies~Momma]

Ok, first of all taking a deep breath and try to relax. I know it can be stressful, especially being pregnant but you CAN get through this. Are you taking any meds (besides the pain meds) to help with your symptoms? If not you should see what your options are right now. Try all of the natural things that help, like hot/cold packs between your legs; warm baths to help with any back or side paid, etc. Try to find the things that help you relax and help with your symptoms. Pay special attention to your diet. DON'T feel bad about taking your pain meds when you need them. My doctor gave me hydrocodone 5/500 when I was pregnant with my first daughter because she was pressing on the "tube" that connects to my kidney. It was horribly painful, but the pain kept me stressed out. We all know that stress isn't good on our little ones so try to make yourself relax when you start getting stressed out. I'm here if you need to vent!

[redsoxfan]

Hi Maylie'sMomma,

Thanks so much for your post. It really helps to hear people who've been on pain meds when pregnant. I know my husband isn't that happy with me taking them, which is an added problem. He's gone really distant with me - I feel like I'm being punished by him for having IC. I can kind of understand that this horrible disease is affecting him as well as me but I do just feel like I'm being punished for being ill and I am scared that he's going to leave me. I love him so much. Part of me doesn't blame him for the way he feels but it just feels like I'm being doubly hurt - first by the IC, secondly by his attitude to me when I'm in pain and suffering. I am crying again as I write this, and then I feel guilty because I'm sure my lovely baby knows when I'm upset.

I know that he feels that I make things worse, but he doesn't seem to understand that crying is the way I respond to pain. He doesn't seem to understand that the pain is pretty much continuous and sometimes I can ignore it but it's TIRING and it's hard to ignore it when it gets really bad... and the fact I'm sleep deprived doesn't help.

I've been having conflicting advice about other drugs. Before I got pg I was on 25 elavil at nights, which although it didn't seem to help flares that much helped with sleep and I think overall, over several months, did have a positive effect. Some doctors have said I should go back on that - at a low dose of 10 to start - but the obstetrician who prescribed the codeine said that I should try not to take that as very little is known about the effect on the baby.

I just feel like I'm not getting much help from anyone other than people on these boards, and it is very lonely.

The other thing I want to try is prelief but I'm in the UK and don't know how to get hold of it here. I don't know whether this is OK in pregnancy?

[ICNDonna]

I'm assuming you are following an IC diet faithfully --- no slip-ups at all --- and drinking enough water. You might talk to your doctor about taking something like Tums --- they can help a lot. And ask your husband about doing some comforting things like rubbing your back. When possible, sit in a comfortable chair with your feet up.

And keep thinking about that baby! I had my children before IC, but my first pregnancy was awful --- I had nausea almost full time, my feet and ankles were so puffy it was hard to walk --- but all it took was one look at him to make it feel so worth it.

Warm hugs,
Donna

[redsoxfan]

Thanks Donna. I do take Tums and I do stick to the IC diet although it doesn't seem to help my symptoms. Diet does not seem to be a trigger for me since I cut out all caffeine and alcohol about 2 years ago.

I think this is one of the worst parts about this for me - there seems to be no rhyme or reason to why the pain gets worse. I just don't understand.

I was thinking that PFD might be making things worse - particularly as the baby is growing - so I've started doing (very carefully) the 'end the pain' exercises in Amy Stein's book - just one set a day at the moment. I thought it might help (one stretch in particular, I can feel the tension in my pelvic floor) but things have got so much worse the past few days. Again, nothing seems to help. Maybe I need to keep these exercises up for longer before I see any improvement? It's so difficult to know what to do.

[sissygirl]

Hi Red--

Sorry to hear you are having such a hard time. Could you maybe show your husband the sections on these boards for family members or just have him read these boards in general to help understand what you are going through?

Don't feel guilty about not having a 'perfect' pregnancy--few pregnant women do. You can't help you that you are stressed and upset. I can tell from your posts you will be a very loving and thoughtful mother. I'm a mother of two and have never been perfect--we all just do the best we can.

Sounds like you are really in a tough place where your medication choices are limited right now. You will feel better after the baby comes without the added pressure on your bladder and you will have lots more treatment options. Is acupuncture a possible pain relief option?

Any chance you could talk to a counselor or therapist? Either by yourself or with your husband? Anyone would be stressed out and upset if they were in frequent pain and preganant like you.

And I would just keep stressing to your doc how much pain you are in--even if they don't have instant answers, they need to know about it.

Meanwhile, maybe you could think of your pain as a kind of like a really long labor....There is the most wonderful prize in the world at the end. :angel:

[redsoxfan]

Hi sissygirl,

Thanks for the kind thoughts and the idea of the really long labour! I think the one good thing about IC is that labour isn't going to be as painful for me. Firstly, I'm used to coping with pain, and secondly to have a pain that I KNOW will eventually be over will be a welcome change!! I've heard quite a few ICers say that giving birth wasn't so bad! I'm actually quite looking forward to it bizarrely....

I agree - i need to keep telling the doctors about my pain. Even though I've had this problem off and on for over 4 years now, I've still not got a proper diagnosis or proper treatment. The only way I'm going to get help I think is by being a 'squeaky wheel'.

red

[sissygirl]

Yes--after what you've been through, labor should be a breeze :smile tee

I have not had the constant pain you have, and I didn't have any bladder issues when I was pregnant. But I know that the very very tough times I have been through in life have made me a better and stronger person AND mother. When this pregancy is over, you will realize what a strong person you are.

Sending you transatlantic good wishes. Try to enjoy your good days to the hilt to help you through the worse ones.

[redsoxfan]

Things are going from bad to worse. I couldn't sleep at all last night. Today I'm so tired I don't know what to do, but have tried to nap and the pain and constant urge is preventing me. This is the worst my symptoms have ever been.

I ended up taking codeine last night in desperation but feel guilty because of the impact on my baby.

I just wish I knew what was causing this. In the past, when I've had very very severe pain like this, it has only ever been antibiotics that have helped, despite the fact that nothing ever shows up in my urine. I've just finished a course of antibiotics though - and I know that if it is bacterial and if they don't know which bacteria is causing it, then just chucking antibiotics at it isn't a good idea, plus there is a limited number of antibiotics you can use in pregnancy.

My urologist says you can have infection in the bladder wall that doesn't show up in urine culture.

I don't know what is going on. Even going back to the discomfort of 3 or 4 days ago would be an improvement - at least I could sleep then - it was a light sleep and interrupted by going to the loo but at least I could sleep.

How am I going to get through 4 more months like this? I am terrified this isn't going to improve.

Why is my life like this?

Sorry to be so down but this is the only place where anyone has a clue about how I'm feeling.

I don't know whether to drink a lot or little. Sometimes I think going a lot makes things worse.

I am terrified I am going to lose this baby.

I just need help and all they can do is give me pain meds. They don't even help that much - they help with the pain but not the urgency. I just want to sleep.

[Skynard]

I am so sorry you are hurting both mentally and physically. You and your husband are in my prayers.

Here comes a hug............................!!

God Bless.

[redsoxfan]

Skynard,

Many thanks - that means a lot. I hope it isn't rude to ask can you include my little baby girl in your prayers too?

I now have intense shooting pains down the inside of my vagina. This is much worse than my normal IC problems.....

I have spoken to the midwife who says as long as there is no discharge then not to worry about the baby. I can feel her moving which is some comfort.

Red

[sissygirl]

Red--

Arrrrrgh....So so sorry.

Any chance you should be seen by your OB doctor if the pain has changed all of a sudden? Do you feel the midwife "heard" you? Any point in having a culture done? I just don't like to think of you having to cope with this all on your own...

Have you posted in the pregnancy section here too? I didn't have bladder symptoms when I was pregnant and I wonder if anyone here did and how they coped..

Meanwhile, sending my most powerful healing thoughts you and your baby's way...

[Skynard]

You, your husband, the baby and all your family are in my prayers. I will pray that you will get some resolution soon and for patience and peace. I hope you have family, neighbors or church family to lean on right now. It would probably help your husband unload some of his stress as well. I am sure he is worried but also very much frustrated at the fact that you are so uncomfortable. I would encourage that. (Feel free to PM me anytime)

I second the motion about just double checking with the OB. Sudden onset of pain could be something.

Just think in fifteen years you will look back at this time and smile. You DO realize that they grow up to be TEENAGERS, don't you!!!!!!!

God Bless.