Getting another Hydro...

[RAS6]

I saw my Doctor today and he is recommending another Hydro under anesthesia. I had one with a different Doc last October and had some relief, didn't last more than a few weeks. That Doc wanted me to get a Hydro every other month, had bad bed side manners, wouldn't help with pain management and had little knowledge of IC treatments. So I found a different doc, have been with him almost a year. This Uro is very good, he is an IC specialist and one of the top ones in the country from what I have been finding out. He thinks the Hydro has many benefits, even if I have no relief he can at least check my bladder capacity, get a new biopsy, and see if there are any noticable changes in my bladder. He is concerned that I have gotten so bad so quickly and wants to help. If the Hydro doesn't bring relief we are going on to either drug trials at the Hospital or I will have to seriously consider interstim.
I don't have an appoinment yet, they said I will get one by the end of the week. He wants to get the surgery in this year; this is going to be an intersting Christmas if nothing else!!

Has anyone had relief after a 2nd Hydro even though the first didn't do much?
Thanks for letting me know.
I am feeling very down and at the end of my rope. I should be getting better!! I am trying so much, meds, IC Diet, therapy, relaxation, past surgeries, installs, PT, it goes on and on. It has been well over a year since my diagnosis and this is the 4th Doctor I have been to. I feel like I am failing at getting better, it is silly, but that's how I feel today anyways...

[ICNDonna]

Mine have always helped so I honestly don't know what to suggest. Just remember that it's your decision.

Sending warm healing thoughts,
Donna

[RAS6]

Thanks Donna. I am so glad you have had relief with these.
I talked to my husband and my therapist too about another Hydro before the Doctor talked to me about it today, I was expecting it to be honest. I feel like I am prepared to try it again, just worn out and scared right now. I don't like surgery at all!! I had a Hydro last year, and had a lumpectomy under general anesthsia two months ago, so I am not excited about another surgery so soon. But I want to get better, I am getting desperate. And I don't feel pressured at all. I like and respect my Doctor and don't feel like he is pushing me into anything. He has had me try many many meds and other treatments. He also suggested alternative stress relief techniques I was already trying: deep breathing exercises, Mindfullness, relaxation CD's, Yoga. To be honest, I am sad and depressed that after doing so much better over the summer on Neurontin I am back to feeling like I did when I was first diagnosed. And the fact that no one knows why makes it worse!

But I trust him and want to try something. I am not ready to go straight to Interstim yet.
I'll let you know when I get a surgery date. At least this time I will know what to expect!

[GriffsMommy]

I hope the hydro will give you longer relief this time. Even if it doesn't then hopefully your dr will gain some usefull info from. I've only had one hydro and I don't anticipate having another one because it didn't help at all for me and my current dr doesn't seem to like doing them. He told me he would have never done the hydro and would have diagnoised me on symptoms alone. How I wish I would have gone to him before having an expensive surgery and painful recovery that he feels I didn't need.

If you trust your dr though, I say go for it. That's what I told my current dr, he wants to try some things that do make me nervous but I DO trust him. I probably trust him more than any other dr I have ever had so if he wants me to try something, I'll try it. He seemed so pleased that I trusted him. It's nice to have a dr who is happy that you trust them not just expecting you to trust them form the get go.

I can only imagine having to do so many surgeries in such a short amount of time. Keep us posted and I will be thinking of you. :grouphug:

[RAS6]

Thanks Christine! I have missed you alot btw! I haven'tbeen on here much, had so much going on! Three b-days this month (nmine included, today actually!) And non stop Holiday stuff at work and Bri's school. Plus when it rains it pours!! Right when I am told I need surgery I had two interviews for new jobs....Go figure!! The one was supposed to be for a parent/familyworker job (social work/skillbuilding) but when I got there they said it was filled and they wanted me to work in a group home with more severly diagnosed clients over night which is NOT an option! The other interview, for a preschool, went great, I think it would fit my life well. It is day hours, out before my oldest gets home from school, Margot may qulify to go too for free, and at the same location every day. No more going all over five counties and finding out the morning of I need to work! Also the kids there are old enough to not need to be lifted, but do not to be restrained like many special school and hospital jobs I applied for. We'll see what happens. I am massivly in medical debt even with insurance and unhappy with my job and what it is doing to my health. My supervisor has gotten MUCH better, but her boss is not great to work for and I am worn out.

Anyways, my Uro doesn't do alot of hydro's on the same patient (not like my first Uro who was pushing for bi-monthly Hydro's!) but he wants me to try this before going into Botox/cellcept trials (I am 2 hours away from the hospital and I would possibly not be able to work at all due to having to be there every week or more) or having the Interstim put in and I have to agree that it is less invasive/time consuming than my other options! Plus he makes a point on getting the biopsy, determining if my bladdercapacity has changed, etc. Also part of my rough recovery last time was due to well meaning but unknowledgable nursing staff and my old Uro telling me I could drink tea and apple juice and eat anything I wanted. I imagine most of my pain was due to a very bad diet related flare and not even the Hydro!! I jsut didn't understand food and my body back them I was JUST diagnosed after all. Plus I know to listen and take it easy this time around.
If it doesn't help I found out the Hospital I see my Uro at has trials for the new interstim (smaller and also approved for pain in Australia, and approved for frequency/urgency/incontinence in US) this summer and it may cost me nothing, not even have to bill my insurance. So I think things are happening for a reason. My current job is slow in the summer and if I get the preschool job we are off for two months and elligable for unemployment during those months; so again, I could have surgery and rest all summer without fear of bankrupcy. I cannot get disability right now b/c I have only worked PT my whole life. I haven't applied for SSI yet, I know I will probably get denied and have to wait a year for my appeal to go through (that is the theme in NY) and we wouldn't survive without my little income. We are on the brink of disaster as it is!!
Sorry so long, I appreciate you love and support!!
Hope things are going well for you. Email me some time!