Thread: My own IC horror story....
01-26-2012, 11:02 AM #1
My own IC horror story....
So one random day I started having bladder pains and thought it mightve been a UTI. I was in the bathroom all night and all day until a doctor could see me. When I finally went, she told me it wasn't a UTI. So I went to a urologist as the symptoms hadnt gone away after a few weeks. Did a bunch of tests and whatever else and still no relief. That was almost 5 years ago...
Now here I am sitting here typing this and still have not gotten one second of relief to this. To make matters worse, I am now 7 months pregnant and in such agonizing pain I could just die. It's even worse knowing that there is nothing I can do and I just have to tough it out. Nothing helps me. I've given up sodas, chocolate and all the bad stuff for the diet and have done so many times but it hasn't helped. I was on Elavil for a while and it sort of helped contain the urgency and frequency but not the pain. I had to stop taking it once I found out I was pregnant.
I just don't know how to make it these last few months. The pain has gotten so overwhelming that I just want to curl up in a ball and cry and I keep wishing that I could just get this baby out of me now. I didn't expect it to get this bad honestly.
I don't consider myself to have "flares" because for me, the pain has never gone away so how I can have a flare of something that's already there? My current urologist doesn't seem to understand that and I'm in sort of a pickle having only Medicaid as my insurance (I can't afford normal insurance because of my IC- pre existing conditions cost more).
This is devastating me so badly because I'm in pain all the time, I'm depressed, uncomfortable from pregnancy, can't sit through a movie, can't have sex with my husband, can't have foods that I crave and there is NOTHING i can do. At all.
I'm forgetting alot of things but writing this post is depressing me and I have to end it.
01-26-2012, 12:51 PM #2
I am so sorry to hear you are in pain during what should be such an exciting time. I hope your symptoms get better once the baby is out and you have the support you need when the baby is born. I am terrified of having a baby with IC and pretty much have accepted it won't happen for me. This could get better when the baby is out. could the baby be pushing on the pudendal nerve? THis causes frequency and urgency. Can you take pyradium? What about Heparin instillations. I heard this was ok for pregnant women. Also, maybe see if you don't have a yeast infrection making it worse. I know you are miserable. Baby steps... once baby is born see how you feel. Try not to look too far ahead. Maybe your hormones need to calm down.Frequency/Urgency, Mild Pain, Spasms, Pressure
I have tried:
Bladder Spasm medications and antidepressants - all cause mydriasis
Antihistimine - Mydriasis
Cyclosporine - side effects
Elmiron - side effects
Botox - can't pee but need to all the time
My 11 year old german shepherd taken away because I am no longer able to care for him. Feeling yet another failure.
I am trying:
IC and anti oxalate diet but staying on Cystoprotek
Acacia Fiber (helping some)
Hugs and Kisses from my German Shepherd
01-26-2012, 02:12 PM #3
My urologist said that there is no safe procedure until the baby is born. I'm thinking about having a second opinion but whats the point? He also said that my symptoms are worse because my uterus is pushing on my bladder and it's going to get worse as the baby gets bigger.
I'm pretty sure I don't have a yeast infection since there's nothing smelly down there but there's no harm in checking!
I'm doing the best I can dealing with this. I almost wish the pain would go away for a little while and then come back so I can at least have a moment of peace. I'm complaining now and I know it'll only get worse.
01-26-2012, 02:20 PM #4
- Join Date
- Jun 2007
I would get a second opinion. Some doctors are much better informed on IC than others. It sure wouldn't hurt.
01-26-2012, 02:34 PM #5
I guess my urologist is listed on this website under the professionals section. So maybe a second opinion is useless.
01-26-2012, 02:43 PM #6
- Join Date
- Jun 2007
I saw several doctors for several years before putting all of the pieces of the puzzle together. Some of the information I had to find out myself. When my husband was diagnosed with Celiac disease, and we both went on a gluten free diet, my condition greatly improved. I have been reading The Better Bladder Book recommended here, and it says many of us with IC are also gluten intolerant. I don't know why more doctors are not aware of this. My urologist was, but when I mentioned it to my family doctor he didn't have a clue. My advice is never just "give up" and accept it. One of the doctors I saw said he didn't have answers, but he was sure someone else would. Keep trying.
01-26-2012, 04:01 PM #7
- Join Date
- Sep 2010
So sorry you have been sick for so long. I do not have any words of wisdom since I do not have children. Your post is one of the best examples of how devastating this disease is to the mind, body, and soul. Sending you Healing and Warm thoughts and hugs.
I pray that you and all IC patients find healing and relief!
01-29-2012, 09:05 AM #8
- Join Date
- Oct 2011
Google 'bo ma med' and then look up ICAMA
for diet advice
02-05-2012, 06:29 AM #9
To the Borg Queen:
Please rule out a yeast infection. They are sneaky. Walmart and Target both have a generic version of Monistat type cream that only costs $5. use some.
Also, get Scott brand toilet tissue.
I've had this stupid IC since childhood, I'm nearly 60 now, so I know a few things about it.
I know we are all different as hell! I was lucky in that pregnancy was the only remission I can remember. Although the baby was putting some heavy pressure, all my symptoms just cleared right up.
You sound like there might be a pinched nerve. If you can find a good chiropractor that is gentle and careful, it might help a little bit. Later you can get a pelvic floor physical therapist. let us know how you are doing!
02-05-2012, 10:57 AM #10
Thinking of You
I know that the pain can be so hard to deal with and so many of us would like to take away that pain if we could.
I want you to know that so many have been in your situation and there begins to be a light at the end of the tunnel.
It's hard to be hopeful when the moment you are in is so uncomfortable.
As someone who believes in the power of prayer - I am praying for you.
Know that there is so much support here and many here have been down this road and found improvement.
Wishing you relief - ericSymptoms:
Sensory Urgency - having to urinate when I have lower volume in my bladder. Sometimes bladder discomfort. Sometimes Testicle aching. Heavy Anxiety!
Pelvic Floor Dysfunction. Dr's don't think I have IC but the more I read the more I think this is all related. I also have a severe hormone imbalance - extremely low Testosterone.
Zoloft 100 mg, Valium 5mg (use sparingly)
What might help me:
Still trying to figure this out.
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