ic pain and very pregnant

[K1980]

I'm brand new here and this is my first post, so I hope I do this right because I really need some advice.
I was diagnosed with IC last October when my urologist did a cystoscopy. I then began the DMSO instillations. I only had 2 treatments though because I had a bad allergic reaction both times, breaking out in an itcy rash over my face, arms, and lower abdomen. I wanted a break so bad from the urgency and frequency that I was willing to take the allergic reaction if the DMSO would help. Unfortunately, the doctor wouldn't allow me to have anymore treatments because of the reactions. I then started bladder instillations with everything that is in the "cocktail" except the DMSO. What that is, I don't know. Anyway, I did this once a week for five weeks. I did have some improvement in the urgency and frequency for a few weeks following.
In January, my husband and I found out that I was pregnant. We were and are very excited about our daughter, who should arrive in mid-October.
My problem is my IC has been very bad throughout the entire pregnancy so far. My OB-GYN gave me a prescription for pyridium, which helped with some of the pain I experienced in the second trimester. My last visit with him, (last week) I told him about how it was no longer helping and how bad my bladder pain has been. He prescribed Utira for me and said it was stronger than the pyridium. It has not helped at all. He said IC can't be treated during pregnancy. I understand that I shouldn't take any medicines that would harm the baby, but I need some kind of relief. I do not sleep at night because I go to the bathroom every 5 to 10 minutes--I've timed it. It's the worst between 10pm and 4am. Lately, I've been getting my sleep during the daytime when there isn't quite as much frequency. The pain has become so intense that I find myself afraid to get up to walk to the bathroom- out of fear of pain. It is the most severe when I walk or when I am sitting and I change position. Many times on the way to the bathroom I stop because I can't take it and I double over in pain. My husband works offshore, so I'm on my own to get around.
I know the pain is worse since the baby has grown and I now have more weight and pressure on top of my bladder. I also know I hurt worse when she is active and moving. I'm 32 weeks pregnant and I just don't know how I can handle 7-8 more weeks of this incredible pain. Sometimes I just sit there and cry, wishing someone would just shoot me and put me out of my misery. I'm 24 years old and I think about what a long miserable life I'm going to have with this IC.
Anyway, if anyone can offer some advice, I would really appreciate it. Thank you.

[Kiyoka]

Hello welcome to the board, you did a very good job on your first post. I'm 21 i'm going to college right now. I'm here if you ever need my help, your welcome to email me or anything kiyokafett@yahoo.com. I hope things start to get better for you. I hope you find a good treatment sooon. we are all here if you need us.

Hugs

[Katrina]

:welcome: :welcome: :welcome: :welcome: welcome to the boards.
http://www.ic-network.com/forum/showthread.php?t=7562 This post on the second page has 4 attachments in some of my posts....the last one has a list of some IC pain relief ideas....some of which your doc may be open to even during preganancy....look into that..... http://www.ic-network.com/handbook/ also look at this site....it is a resourse for every ICer. Good luck with your pregnancy and with getting relief that you and your doctor can be happy with.

:grouphug: :grouphug:

[Hope]

Hi,
Welcome to the boards and congratulations on your pregnancy. I know it's not easy though. The suggestion to look at the information on this site is a good one. In particular, check out the IC Diet. You didn't mention if you have tried this yet. Many icers, like myself, are very sensitive to certain foods. I would try eating a very limited diet for a while. The limited foods are very healthy, so you shouldn't be too hungry or deprived. It may help. Post anytime, this site is a lifesaver, it really is.

Take care,

Hope :cat:

[Sarojini]

:welcome: to the ICN!

Unfortunately, I don't have much advice for treatments during pregnancy... I've never been pregnant. I DO know, though, that there are some pregnant ICers on these boards, so hopefully they will see your post and reply to you with some suggestions.

Good luck, and congrats on your soon-to-arrive little girl!!

[SharonA]

I'm sorry but I also do not have any advice for you. I do want to say :hi: :welcome: to the ICN. Like Jen said, there are some who post here who are pregnant right now or have just had their babies. I hope they check in and are able to help. Congratulations on your soon to be born daughter. :)

[heybrej]

First of all, congrats on your baby girl. I know its hard now, but it will all be worth it when she is in your arms. Like everyone else has said, there are a lot of other people here who are pregnant or have been pregnant with their IC. Good luck and God bless. Hopefully your pain will subside a bit when you are done with your pregnancy. Im sure that the pain you are in right now wont be as bad once you are no longer pregnant. Everything will be okay in the end!!

[Dixiefireball]

hi and welcome to the ICN family. please check out www.ic-network.com/handbook it has some wonderful information it. there is a preg. pages for IC pat. somewhere but i forgot where it was. hopefully someone will come by soon with the right web address so you can check that page out or you can try www.ic-network.com
i'm pretty sure you can find that page there.
sending you hugs and prayers
Plz keep us update on how you and the baby are.
Rhonda

[K1980]

Thank you all so much for replying. It means so much to me. It is so good to know that there are others out there who know what I'm talking about.

Kristen

[K1980]

Katrina, thanks so much for the "how do you handle your pain" thread. I definately think it will be useful for me to know what is helping others.

[Iris]

Hi Kristen and welcome, I know you must be very uncomfortable now, and I feel for you, I did not have IC when I was pregnant with my children, but know how uncomfortable it can be towards the end, and especially with you having IC as well. The gals have given you some great advise, and Katrina's list is wonderful, so do check it out. I hope that you can get some sort of relief for your pain, but know that you can always come here, and vent, and get support, whenever you feel the need. This is a great support group, and like the gals have said there are several girls here now, who are pregnant, and I am sure they will give you some helpful information. Congrats on expecting your little girl, and please keep us posted as to how you are doing. Take care and welcome hugs Iris. :hi: :welcome: :grouphug: :flower:

[AnnaBanana]

I just wanted to post a quick note. You hang in there b/c I can only begin to imagine how rough it is on you right now during the pg. During my last pg, I developed a severe autoimmune disorder and was put on several meds. Of course, I drove myself with worry over hurting the baby. My dr pointed out two things that made me feel so much better. He would not put me on a med that is known to cause problems with the baby. The second part, which is very important, is that it is more important to keep diseases under control b/c stress alone can often cause more probs in the pg than taking medications. Take care of yourself and you'll be taking care of that baby. Try not to focus or fret too much about how you'll deal with this after the baby. Right now in your pg is a really hard time on a normal bladders so must be terrible for a diseased bladder.

One other thought of medications and your pg. At this point in your pg, the baby has completely developed (minus the lungs maturing) and the baby is now busy getting bigger. The big concerns with meds and pg is during those extremely critical, first few weeks. It is during that time that meds can cause the development process some trouble resulting in birth defects, etc. This is a sensitive topic and soemthing you will have to decide on for yourself. My vote is that you take care of yourself b/c that is very important for the baby too!!!

Hugs~ Hang in there~~~
Anna

[aantol73]

K-
I am pregnant with my second baby and although it hasn't been proven safe to take Elmiron and a few other IC drugs during pregnancy there are other meds, like pain meds, that can be taken and are perfectly safe. They (your uro) can also inject some meds directly right into your bladder to lessen the pain. I am now on vicodin for my pain. I also have pyridium for when I need it. I would call your doc back and ask for something for your pain. If your bladder is in that much pain and is spasming it can send you into early labor. Plus pain can raise your BP and temp. which is also not good.... don't give up just b/c your doc said nothing can be done. IT IS UNTRUE!!!!!!
You do NOT need to suffer.....
Good luck and big hugs!!!!!

[tigger_gal]

I'm not preggers either sorry, just here to offer you a huge hug. A very good friend of mine who has IC Just went thru pregnancy, and unfourtanetly she had a very rough road... When I was preg I spent 7 of the 9 in the er with iv's noting related to IC tho.... I sure wish I had answers yo help your pain, perhaps sitting in a warm bath if allowd to and the heating pad or ice....
hugs
Brat

[blondiecat]

I just wanted to say :hi: and Welcome to the boards. I am sending you "feel Better" Vibes and prayers that you get some relief soon. CONGRATS on your new addition to the family. We all would like to see pictures of her when she gets here:)

[crystilclear]

Hi I can totally relate. My pregnancies were aweful horrific insainly painful. I did not know I had IC, Fibro, psoraitic arthritis, collitis, and all the other crap that I have but believe me I had it then and I felt it! My IC especially flarfed with my third baby. I was begging them to induce me early. They treated me so bad because noone knew what was wrong with me (and didn't care to try and find out either). I don't know what they can so for you since I was only treated with Tylenol 3, brethine sp? to help stop premature labor and reduce the amount of contractions I was having. The bladder spams were so bad we believe now that they were causing the contractions which started the premature labor. He was only born 3 weeks early! Talk to someone else if he can't offer you any more advice. Every day was absolute torture for me and I hope you find something that helps. I am sorry you are having to do a lot of this on your own. I found that I could sleep so much better in the day as well but with children already well let's just say I was a walking zombie. Get as much rest as possible. Watch what you eat ofcourse and I'd say take the prelief with food as well. I think that it is ok for preganacy. Take care

[Babs RN]

Just another contribution from the peanut gallery--there are multiple meds you can take for pain that, when used under doctor's care are safe. Medications are given alphabetical labeling to determine safety during pregnancy from Category A drugs that are absolutely safe in research, B that are safe but a risk benefit ratio with the doc is probably in order, C in which the risk benefit ratio needs to be investigated even further. Category X meds are absolutely contraindicated like Coumadin. I'm only a nurse, so of course this is info based on my observations and knowledge as a nurse. Let me know if you have any other questions, would be glad to help out.

Hugs and Welcome,
Barb

[work it]

Congratulations on the baby girl. Alexis is so right just because they have word Dr. before their name doesn't mean they know everything. You may need a second or third opionion from another Dr. or by doing research on the internet you can inform your Dr. of other options. I am in the process of becoming PG so my I go once a week to the Dr. to have bladder instiiations with elmiron.
Good luck , I have learned so much already through this wonderful site.

Teisha

[hopeful]

hello, yes you are not alone. Im 28 and have been diag with ic for just about 3 months now. Im sorry to hear your in pain and preg on top of that i can just imagine, thankfully i had my son before ic came along, but we are thinking of having another and i must say i doubt sometimes if i can do this. I give you props for you making it your strong just remember that. dont give up. love hopeful