still Feeling crappy after my 3rd one

[Lmarks33]

So I am still feeling horrible and my cysto/hydro was on April 2nd. I have so much frequenct/urgency it seems to be worse than before. I sleep in the fetal position because of my bladder and it just aggravates my back. (have a bad one of those also)

I am taking Elmiron, Cysta Q and Cingular for my IC. I feel like it is such a waste because of how I feel. I would love to know what some of your Dr's have you on for Frequency/urgency. I am so down and feel like this will never get any better. My first 2 Hydro's at least made life better for a period of time.

I am 35 and feel like I shouldn't be having these tpe of problems until I am much older.

Sorry for my complaining...I am just frustrated and sad. Any advice is always grateful.
:(

[Audrey Rose]

BIG HUGS AND A :kissing:

L, I am so sorry you are in so much pain. Have you talked to your doctor about how miserable you are? She/he should be aware and helping you make appropriate changes in your treatment. We are all so different, and there are tons of meds and other things to try. An MD should be helping you make these decisions. But you can certainly go in with a list of options and ask her/him about them.

For me, atarax has been the answer to frequency. It keeps me under the 20 times a day mark, and when things are good, I am down to 11-12 times a day!! :D

Pain is still a huge issue. I am on an amazingly strict diet and that has helped the most of all. Prelief helps also!! I am kinda afraid to add anything back since I am doing a bit better. I take muti-vitamins and extra potassium to keep leg cramps (low potassium)at bay. I take ultram daily for pain and do DMSO treatments monthly now. The hydrodistention did nothing for my symptoms. I also take birthcontrol pills to help with the increased bladder pain during my cycle. I feel like it is helping.

I understand about the sleeping problems. I have back and neck issues as a result of IC. I am in physical therapy twice a week and have been since the first of March. I started it when I developed numbness in my arms and legs. Besides sleeping weird, I have also noticed that I rock my pelvis back when I sit to decrease the pressure on my bladder but this has caused further damage to my spine. I now work hard on posture and on trying to not tighten my pelvic floor muscles in response to the constant pain. My PTs have been so helpful in teaching me about all of this.

The Cura-heat or Bodi-heat pads give my relief during the day and I use a heating pad every night.

Well, that is my story as of today. I recommend keeping a pain and voiding diary along with a diet journal to help track your progress. It helps you to get to know the subtle cues from your body. I bring it to appointments so my Uro can help me interpret the results. I think it is so important to communicate well with your URO. It makes things smoother and more effective.

I am 35 also, but feel like I am 80 sometimes. I am obsessed with my poop and pee and meds and I spend time in doctor offices every week!!! AAAhhhh!! I am seeing a psychiatrist regularly and that is helping soooo much!! :flower:

Good luck!! I pray that you soon find the magic combo that works for you!!! Drop me a note anytime if you need to vent. I am a good listener!!!

:pray:

[Dixiefireball]

hon i'm 29 a mother of three I do know how you feel my first guess would be that you may have gotten a uti after the dmso anytime a cath is in us there is a very good chance of an infection please have it checked out asap.
sending you gentle hugs and prayers
Rhonda

[creatingkarma]

Girls, I don't know how many times a doctor has told me that I was to young to be having such & such problem or I'm concerned because I usually only see this in the elderly. Geez! My 89 year old grandma gets around better than I do & I'm not kidding! I can't imagine what we're going to feel like when we actually are 80! I'm 30, by the way. That's a long time to go!

Karma

[Kimberly31]

You have to just remember first that everyone is different and respond differently to meds, procedures, etc.
I know that after having this cysto/hydro 2 times now a year apart that is it very common to get a severe UTI that is something that you never want to put off it can really make you sick if you do that is your first thing you need to talk to the dr. about checking if you are having severe pain, freq, urgency, burning etc.
Next thing is that I believe that it is very very common for a cysto/hydro to put a IC'er into a flare. Being as though they go into the bladder and totally piss it off!!!!!!lol It really takes time for you to start feeling better. But also it can really help you after you get over the actual pain from the procedure just remember that there is really lots of HOPE :) Gotta love that thought huh? We all do I am sure that is what we all pray for everyday for ourselves and anyone that is going through this horrible disease.
You are welcome to pm me or email if you would like to.
Take Care and God Bless!
I hope this helps you some:angel:
Kim

[MelanieJ]

Hi Lmarks,
I was young when my IC started too, so I understand your feelings about that. For the frequency/urgency, I use Ditropan XL daily. It also helps with those pressure feelings in my pelvis/bladder.

Good luck!
Melanie J.

[Nicole in ATL]

I'm 29 and was dx with IC about 2 years ago. I've had chronic UTIs since age 17. Started having IC symptoms around 25, but just lived with it.

Sorry you are having bad frequency/urgency. I have that too. It worsened for some reason after my only cysto/hydro. My uro said sometimes it can take months to get back to your normal or baseline symptoms.

My meds are atarax, elavil, oxytrol patch, and percocet as needed for pain. In the past I've taken elmiron, detrol LA, ditropan, and urispas. The oxytrol patch works the best for me for frequency/urgency, with very little side effects (dry mouth and some constipation). When my freq/urgency is very bad and painful, I take a percocet and this really helps.

Call you uro and tell them that you are feeling awful. They should be able to prescibe something that will help.

I hope you feel better soon,
Nicole

[Lmarks33]

Hi there,

I am not familiar with the Oxotryl patch. What is it? at this point I will try anything. I am back on an antibiotic just to makes sure that I do not have any infection. I have been taking pyridium for frequency/urgency but it just doesn't work. I would feel great if I didn't have those two things. I may try Elavil but have mixed feelings about it.

Thanks for everyone's support. It is much appreciated and much needed.

[Sarojini]

The Oxytrol patch is a clear adhesive patch you stick on your skin. It contains oxybutinin, which is the same thing as the oral med Ditropan (for frequency/urgency), but in this case it is absorbed through your skin instead of in a pill. It's convenient, because you only have to change it every 3 or 4 days.

I wish I could use it... I am allergic to most adhesives, including the one on the patch, and had a bad skin reaction to it, so now I can't use it. But, if you don't have sensitive skin, and you find that anticholinergics like oxybutinin work for you, it is a pretty cool way to get your meds.

Sending hugs,

[Babs RN]

Hi, I am 33 and there are days I feel like 80 too. I take Ditropan,
Vioxx, Percocet, and Ambien and Elmiron as well. Hang in there and hopefully your doc will work with you.

Hugs,
Barb

[hawkbabe]

i am 19 yrs old with ic my friends joke with me that i have a bladder of an 80 yr old.

[hawkbabe]

i am 19 yrs old with ic my friends joke with me that i have a bladder of an 80 yr old.

[ICNDonna]

I also think you should be checked to be certain you don't have an infection.

I take hyoscyamine when I am having spasms; it takes a couple of days to really be effective, but it works well for me.

Warm healing thoughts,
Donna