01-22-2008, 08:11 AM #1
i've never had a hydro, should I get one?
My last uro mentioned this as a possibility last time I saw him... but said it wasnt necessary and recommended DMSO, which I cancelled out of fear from what all I have heard about it.
I seem to read mixed things about hydros and it seems kinda complicated having to go to the hospital and all, but would it be worth it?
I deal with extreme frequency, would it help maybe?
I dont want to do something that will make things worse if I dont have to do it, but if this is something that could potentially do me good it may be worth it.
Looking for opinions.......................
JenaDiagnosed formally with IC in July 2007 (although I have had the symptoms for 6-7 yrs)
Main Symptoms: HORRIBLE frequency and pressure
Wellbutrin Sr (i dont know if this causes flares, but i cant live w/o it at this pt)
currently in PT, though I only can go every other week- will be incorporating trigger point injections soon.
Trying Aloe capsules- but have noticed not change thus far.
Take Ativan as needed for anxiety
Vicodin on rare occasions for pain (dont want to be addicted- and it puts me in a euphoric state, but it helps)
Was given Bentyl for IBS to take when needed. I dont really notice any relief from it though.
Scared to try: Elavil, Lexapro, Neurontin (i have to work to stay thin and healthy, I have put in my time over the years!!!, i dont want to see it slip away because of medication... that would just cause more anxiety and depression)
Have tried w/no luck:
01-25-2008, 10:28 AM #2
- Join Date
- May 2007
Getting a hydro on Monday
You and I seem to be having the same problems. I started with all this business 2 years ago. My regular dr. tested my urine during a visit and found lots of blood in it. So I had to have all the test done, IVP, Cat Scan, cystoscopy etc by a urologist. He couldn't find anything, put me on all the OAB medicines. I tried them all they didn't help me at all. My problems are frequency (about every 30 min) and urgency. I've also started to experience the pain in the last 6 months or so. Anyway, the urologist finally threw up his hands and said we could try a hydro and DMSO instillation. He didn't seem really helpful, so I put it off until this Jan. (this has been 2 years of this). The uro didn't even tell me to come back or anything, just to think about having the procedure and let him know. I was ******.
So I went to a different urologist (one listed on the drs list on this site). He's farther from me but he walked in the door and said, I bet you're having back pain, pelvic pain, etc. He listed almost all of my symptoms. He gave me a cysto and now has me scheduled on Mon for a biopsy, hydro and DMSO if needed. I even hesitated to have this done. I'm scared what if it makes it worse. But my regular dr. really helped and told me I was too young not to try this. I'm 44 yikes almost 45. So I'm going for it. I hope it helps and it isn't too bad.
01-25-2008, 02:17 PM #3
If you reason for considering it is because it could potentially be a therapy than trying it is definatly something you want to get info and consider.
There are a few different things that contribute to frequency and if bladder capacity is contributing to yours than out of the few options you have a hydro is one of them.
Good luck!Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
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01-25-2008, 03:09 PM #4
- Join Date
- Oct 2007
Jena -- there are lots of other things to try that are less invasive. My doctor recommends that only as a last case scenario. She does the electrical stimulation to the ankle first, and it's been very helpful for many of her patients for the frequency and urgency issue. Also, make sure you're doing the diet very strictly for a period of time as this can make a big difference! Good luck to you!Karen
01-25-2008, 05:32 PM #5
The first hydro I ever had left me pain free for almost an entire year. It was one of the best IC-related decisions I ever made, but I was in bed for about 2 weeks after the procedure. I had one at the end of 2007 and it did not seem to help at all, which really disappointed me. I had it done by a different doctor though, so it could have a lot to do with it. I would suggest that you look at some other options first, but it could definitely be beneficial to you.Allison, 25, living with IC since 2002. Add me on Facebook! (search Allison Jacobs)
IC, Chronic Pelvic Pain, Neuropathy, Adenomyosis (hysterectomy to "cure" this), Vulvadynia
Elmiron--200 mg twice daily
Cymbalta--90 mg once daily
Various pain meds, rotating
Spinal Nerve Stimulator implanted 5/10, mostly unsuccessful
D&C and hysteroscopy 8/08, somewhat helpful
Mirena IUD began 12/07, unsuccessful
Lupron Depot 6/07-8/07, unsuccessful
Hydrodistention 2004, 2007
Physical therapy 2003-2006
"Tomorrow is the most important thing in life. Comes into us at midnight very clean. It's perfect when it arrives and it puts itself in our hands. It hopes we've learned something from yesterday."
01-25-2008, 06:24 PM #6
I dunno. I had a pretty mild case of IC -- still do, I would think, in comparison to the horrible things I read about on this site -- before I had my hydro. The hydro seemed to make it much, much worse... and stayed worse. But it's different for everyone!"And even in our sleep, pain that cannot forget,
Falls drop by drop upon the heart,
And in our own despair, against our will,
Comes wisdom to us
By the awful grace of God." - Aeschylus
2004: Diagnosed with IC, IBS, Restless Leg Syndrome, Fibrocystic Breast Disorder
- Colostrum capsules
- Grapefruit Seed Extract
- Cod Liver Oil
- Aloe Vera capsules
- Sodium Bicarbonate
Tried and failed:
- Vaxa Buffer pH (oi, shoulda known)
- Quercetin (just doesn't work like the MSM)
01-26-2008, 03:19 AM #7
I'm one who has been helped by hydrodistentions. In my 33 years with diagnosed IC I have had 41 hydros. If you've tried other things and are still suffering, I suggest you consider it.
DonnaHave you checked the ICN Shop?
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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01-26-2008, 04:06 AM #8
- Join Date
- Aug 2006
I am the same as Donna. A HYDRO brought me down in pain and frequency. I am able to sleep through the night again. I don't know why they work for some. Extending the bladder (by an expert Doctor with a lot of skill) must make it larger. Maybe it was too small to hold much urine. To my knowledge he only put water in the bladder and took nothing out like a piece of it. I never did suffer much after. He gave me some pain pills and said to rest which I did. I have no idea but I believe many people who have a horrible time after a HYDRO had a Doctor who overfilled the bladder or decided to put some meds in there which might help in the long run but hurts right after. It would not be out of place to ask the Doctor how many has he/she done before and just exactly what he/she is going to do. I believe a OBGYN is more familiar with the insides of a women's body then any other kind of specialist. Mine delivers babies, takes care of all kinds of cancers, etc. He seems to understand completely when I explain something going on that is new for me. He has seen and heard it before. It is a hard decision I have no doubt. I think if I were in terrible pain & frequency and nothing else worked at all. I would give it a shot. Please keep us informed. We need your inpute, not to mention, we care very much. Hugs, Ziggy
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