Getting the Hydrodistention With DMSO

[LisaRose]

Hello fellow IC'ers

I've been reading this forum for a few months, but just joined. I started having problems last July. At first it was a bladder infection, I took the meds, and got better. Then I started having symptoms again, as it was the weekend, I called and got some antibiotics. This time it seemed to take a lot longer to feel better. Finally in August I saw the doctor and again got antibiotics, even though the urine was pretty clean. I was going out to CA to house hunt and didn't want to get worse out there.

This time the antibiotics did nothing, in fact I got worse, I was in agony. At this time I suspected I had IC - but knowing that treatments were iffy, I resisted going to the doctor. After a month I couldn't take it anymore and got a referral to a urologist.

The urologist did a cystoscopy and said my bladder looked fine. He thought I had a stone. Since the scope showed nothing he never mentioned IC, I thought that meant I didn't have it. I have since learned better, but at the time, I believed him. I got a cat scan, and about that time the pain got much worse. The scan showed nothing. The urologist's PA gave me pain meds and told me there was nothing more they could do for me. I was devastated.

To make matters worse, I was in the middle of a move from Colorado to California. Due to my regular doctors attitude and mismanagement, I saw a new doctor right before I left. They told me the scope being normal did not mean I didn't have IC. They gave me oxy which allowed me to function during the move. They also put me back on Amitriptyline, a drug I was giver in the past for fibromyalgia. I then moved to California. House hunting was a nightmare, all the houses we wanted were short sales. After staying in a horrible short term hotel, we found livable temporary housing and made an offer on a house.

I had to wait 6 weeks to see a Dr. in California. By this time I found this board and got on the diet. This helped a lot as I had run out of oxy and couldn't get any more from my Colo Dr. due to drug regulations. She believed I might have IC and tried to refer me to a gyno-urologist. This couldn't happen as I have Tricare (military) insurance. I had to see a gyno at a Military treatment facility, even though it was a waste of time and he couldn't do anything for me. I was then referred to a urologist. I saw him, which was a complete fiasco. he disliked me on sight, started grilling me like I was a criminal and then when I expressed my frustration with my previous urologist barked out that he didn't like my attitude. I shut up at that point and we got on with the visit. He at least referred me to a pain clinic, where I was able to get back on oxy. He also offered that I could get The bladder hydodistention with DMSO.

At first I didn't want to get this. I was leery of doing anything with him as it was very obvious he didn't do this procedure often. He couldn't even answer a basic question about the percentage of DMSO he used. I had read that the higher percentage sometimes results in muscle damage. He was unaware of this. And of course I didn't want to deal with him any more as he was a complete ass. After mulling this over and talking with my regular Dr. I decided to risk the procedure, and I am getting it next Wednesday.

I am not really afraid, but I would like some reassurance from anyone who has gotten this and what your results were, good or bad

I hope this helps me as we finally got into escrow with a house and are moving in April. As this was a corporate move, the movers will do a lot of the work, but it is still daunting to deal with this the way I am feeling. I wanted to move to California as I was from here originally, and I love it here. But it's frustrating to not be able to enjoy my new life.

I also have started back up with my small antiques business out here. It's very difficult, but I felt if I let that go I would have nothing to make my life meaningful, as this is my creative outlet and makes me happier, even if it is challenging. I am in a cooperative that has a 4 day sale once a month. I only have to work a 4 hour shift during the sale, but by that point I am exhausted getting my space ready, so it is a bit hard on me, but not near as hard as the full time shop I had in Colo, so It's really perfect for me right now.

I'm sick of the pain and fatigue. I'm have to take large quantities of Senokot in order not to be completely constipated (6 days with no movement is the record) due to the pain meds. I've gained 10 lbs due to the Amitriptyline and eating due to frustration. I able to be active only a few hours a day. I have managed to maintain a positive mood due to meditation and help from friends, family and my loving husband, but it's still difficult.

Thank you to anyone who managed to read this lengthly post. I have really enjoyed reading everyones posts and the information here has been very helpful to me.

Oxy 10 Mg 3or 4 x
Amitriptilne 50 MG 1x
Pababeniten 300 MG 6 X
Quercetin
Fish Oil
Fur Therapy (my elderly tuxedo cat Cleo)
Meditation
Journaling

[bob04951]

LisaRose,
Welcome GF, but sorry to see yet another here, glad you found this site, you will get a lot of support and info. It's a shame you have had bad experiences, but it sounds as though you have a good head on your shoulders and go in to see any doc well armed. It does help sometimes to print stuff out and put it in their hands, it saves them time. Also try to keep a diary of your frequency, pain, flares, etc. And always have a list of questions, believe most will leave an appt and say, jeeze, forgot to ask about this or that. It saves you both time, and any doc worth his/her salt will respect that.

Sure you will get a lot of responses on the hydro, and you are smart to question what they are putting in your body. Trust your instincts and never hesitate to refuse something you are not totally comfortable with. You sound like you are in charge, as you should be. You are the boss of your body. Can't help you with the hydro questions, but you will get responses.

Google away with the DMSO question also, there is a lot of info on line about it. You will be fine, stay informed, stick to the diet, and keep petting that kitty (have 2 shelter kitties, they are wonderful therapy). Hope you enjoy California, it is a totally different world, and feel better so you can get settled in and relax for a while. Go out there and soak up some vitamin D. Wish you loads of luck, it is tough to go through all this stuff at such a stressful time, and stress causes symptoms, so just try to take a deep, deep breath and tell yourself this too shall pass. You'll be okay. Jill,wife of Bob

[ICNDonna]

Hydrodistentions at intervals has allowed me to live a normal life during my 36 years with diagnosed IC. I also have had DMSO instillations, which helped.

The brand name for DMSO is Rimso50 --- it's 50% DMSO --- so if it's diluted with an equal amount of liquid, you are at the 25% that is considered a safe concentration.

I hope your hydro goes well and that it gives you relief.

Warm hugs,
Donna

[cmclien]

Hi, welcome to the board!

I personally would put off that hydro with your current doctor. It doesn't sound like there is any trust in your relationship with him, he doesn't seem very knowledgeable either. My doctor has told me DMSO treatments can be very irritating and cause pain afterwards. That being said he does feel they are helpful for some people. He usually recommends starting with bladder cocktails that are soothing to the bladder. They use different ingredients in them but often they are a mixture of an anesthetic, a steroid and an ingredient that will help coat and rebuild the GAG layer. You get one of those for 6 weeks in office. If that doesn't work there is always the hydro....
Some people here have had pain for weeks after the hydro. I'm really not trying to be negative but I think you should look at your options before going ahead with this with a dr who is "iffy" in his methods of dealing with you. Do you think he will be understanding if you are in pain afterwards? Maybe a 2nd opinion would be worthwhile for you. Find a doctor who deals with alot of IC patients. You could ask your doctor this but it sounds like he is very defensive from the get go.

Either way, good luck.

[LisaRose]

Update to Hydrodistention

Well the hydrodistention did not go too well. I was supposed to get DMSO, but somehow it didn't get ordered, so I was 2 hours late getting started and then they just did it without the DMSO. That may have been a good thing, I'm not sure. After my husband taking the day off and me going without food and water (appt not scheduled until 12:15), I didn't feel like canceling. So far I'm in a lot worse pain that I was before the procedure (It's 2 days later). I know that is not unexpected, still, it's a bummer. I didn't have obvious signs of IC and the Urologist said my bladder capacity was fine.

I'm thinking of changing to a different urologist. The issue is, I have military medical (tricare) and since I live within 60 miles of a Military Medical Treatment Facility, they have right of first refusal. I tried to get that changed earlier, but they wouldn't do it. I can change medical at the end of the year, but at this point I would probably have to pay completly out of pocket to see a different urologist. My military urologist is not very educated on IC and is such a horse's ass that I am sorely tempted to do it anyway. I can afford to get at least some care out of pocket. I'm now sorry I didn't just tell him to f off in the first place.

I guess I'll wait a few weeks and see how it goes.

[Zygala87]

My HYDRO discomfort lasted for about 3 or 4 days. I was given pain meds and took it easy. In my case the HYDRO helped greatly after a time went by. My Husband was a "lifer" in the Navy for 22 years. Retired now. I don't even want to say what I went through with Military hospitals! I hear what you are saying. I feel things have gotten better since he retired years ago. One can find a very bad Doctors in the civilian area often so can't blame all Military health care. We belong to the Family health care portion on the East Coast. New England. We could not get better care should we be the President. Really. We have a massive amount of Doctors to choose from. Do you have a Primary Care Doctor? Maybe they can refer you to someone better? I really think you will feel better soon. Been there done that. I hope so anyway. Hugs, Ziggy

[pookashell21]

My Experience with Hydro/Cytso

I am so sorry you are having to deal with the Tricare nightmare. My husband and I have Tricare too and it has both been difficult and a godsend. It is very hard to get people to ACT and stop giving you the run around with Tricare, you very much have to be your own advocate. I had a similar experience when seeing my first uro, I waited months to see a urologist and ended up being passed along to a PA who had no idea what she was talking about. She was rude and mean and really made me feel awful! BTW this was pre-diagnosis and my husband was constantly gone (due to military) needless to say the PA caught me on the wrong day! I am not proud of it but I kind of lost it with the PA, and ended up being seen that day by a different uro. I don't like loosing it on people like that but it was worth it because I got what I needed which was a hydro and cysto. I demanded that I be put under for the procedure (they tried getting me to consent to it without anesthesia) and actually had a very positive result after that.

I did stay in the hospital for a day (which is NOT normal and most people do not have to stay) because they could not get my pain adequately controlled. However staying for just the day was a godsend and it really helped with my recovery. After the procedure my pain was a little nuts but once they got it under control it was smooth sailing from then on. I cannot speak to the use of DSMO because I decided early on that I would not like to be treated with it for personal reasons (if you want to know you can pm/email me), although I have heard many people have success with it.

I would reccomend getting the procedure done but perhaps changing your doc. It always make a big difference IMHO to be treated by a doctor that is kind and understands your needs.

Good Luck!
Rochelle

[pookashell21]

Also....

I should mention that some bleeding/agitation is normal after a hydro, so don't freak out if this happens. Also, while some docs try to do this procedure while you are awake it is better (from experience and from reading up on it) for patients to be under anesthesia for the procedure because especially for IC patients the filling of the bladder can be very painful. Please discuss with your doc what type of anesthesia you would like so you can make sure you are comfortable throughout the procedure.

[MamaZ]

I agree with Cindi. I'd look for another doctor, too -- even if it's for a follow-up.

For what it's worth, my hydrodistension showed a perfect looking bladder so I was led to believe I didn't have IC for years. Now that diagnostics have changed and are way more conservative all my doctors can look back and agree that I had it all along. WELL, DUH.

I hope you get relief from yours and can find a new doctor. Have you searched through the International Pelvic Pain Society?