Horrible Pain Since Cysto/Hydro

[catwoman_22]

Hello, I am new to this group. I was diagnosed Monday with IC after my Urologist did a cysto/hydro and some kind of special X-Rays. I did really good Monday and Tuesday, but then I got the most horrible pain Wednesday. It is in my lower abdomen, sides, and lower back. I went to ER and they just gave me a shot for pain, but it didn't help a bit. The pain was not any better Thursday, so I went back to ER. This time they did blood work (everything was fine) and gave me shots of 2 different meds. Those shots helped, but they are wearing off and I am still in horrible pain. Is it normal to be in so much pain after this procedure? And does anybody have any idea why the pain would start 2 days after the surgery? How long does the pain last after having this done? I am scared the pain is never going to go away. I am only 22, I cannot live with this kind of pain for the rest of my life. Thanks everybody!

[Ginny]

Did they test you for a bladder infection? It's not uncommon to get an infection after a scope.
Have you called the doctor that did the scope? He might be able to give you something for pain.

Ginny

[ICNDonna]

Ginny is right. Usually when there is a rapid increase in pain following a cysto, it means there is infection --- I suggest you call the uro who did your hydro and get in to see him ASAP.

I hope you feel better very soon.

Sending healing thoughts,
Donna

[ICNDonna]

If, like many of us, you were advised to drink cranberry juice after your surgery to avoid infection --- don't drink one more drop! It's probably the single worst thing for anyone with IC.

Hugs,
Donna

[catwoman_22]

Hi. I wanted to thank everyone who responded to my post. I really appreciate you guys helping me out with all my questions. My doctor gave me an antibiotic after I had surgery so that I probably wouldn't get an infection. It is called Macrobid. He also gave me Levbid for bladder spasms, pyridium for burning and pain while urinating, and Percocet for the abdominal pain. The pain is not just when I urinate, it hurts all the time. It feels kinda like menstrual cramps, but a million times worse. It is in my abdomen, sides, and lower back. Sometimes I get sharp pains in that area too. When I was in the ER both nights they tested my urine and said I did not have any infection, just blood as usual. But I do feel alot better today than I did Wednesday and Thursday. I have talked to the nurse at the Urologist's office, and she gave me some suggestions on what to do for pain. They told me to take the Percocet every 2 hours instead of every 4. I have to go back to the doc in a few weeks, so I will talk to him about it. I have been using a heating pad and heat patches that are actually for menstrual cramps. Thanks so much everybody for all your help and suggestions. It feels good to know I'm not alone in going through this.

[Ginny]

Many years ago there was info passed around at my support group. It said certain antibiotic could make IC symptoms worse. One was macrobid (macrodantin). Are you still on it? Did your symptoms get better when you finished?

Ginny

[catwoman_22]

Yes, Macrobid was the antibiotic he gave me after my surgery. He said it would probably prevent an infection. I am not taking it anymore, he only have me enough for 1 week. I took it twice a day. I do feel alot better now than I did Wednesday and Thursday. I actually started feeling better Friday while I was still on the antibiotic. So maybe that along with other things made it worse. Thanks for the info.

Leah

[rachelm]

I'm glad your starting to feel better. I had intense pain for 2 weeks and then it was a bit more dull for about 4 more weeks. I have found since then that B&O suppositories help my really bad spasms/pain when nothing else will.

The one time since then that the pain was so bad I requested it at the ER and after 2 shots of morphine they finally agreed to give it to me and I was able to rest. Before going to the ER I had taken morphine tablets, pyridium, and was doing my deep breathing while my fiance massaged my lower back. Nothing was working so after 4 hours I decided to go to the ER. I remembered my uro giving it to me after my hydro and it had worked while I was there in the hospital. After having success with it again at the ER I requested an RX for it so I could keep from going back to the ER again. By the next day when I requested the script I was already starting to sprial downward and he knew I was headed for the ER again without it.

I only had to take it for 3 days and so I still have 17 left for emergencies. I had a very bad infection that caused the pain to be worse at that time. I feel a sense of comfort knowing that I can use it if I need it so that I can avoid another ER visit. I have heard of several others that had a similar experience with it. It does cause really bad nausea for me so I always take a phenergan with it. It makes you very sleepy which I always welcomed at the points that I would break down and use it.

Hopefully your on the upswing and won't need anything else. If you do not hesitate to ask your dr. about this.

Rachel

[Julie Smith]

I just hat it when anyone has just awful pain after this procedure. I truly feel for you. I felt horrible for 4 weeks then tappered and at 5 weeks I was ok. I was WORSE than I had been before. My dr. told me meds. would make it worse and not help. Therefore, I lived in what I call hell for that time. I did finally find a dr. who did believe in meds and I was able to stay sedated.

I hate to tell my story. I will NEVER have this procedure again. Yet, so many have to feel better, strange isn't it?

Get lots of rest, take care of you,
Julie:kiss: :toosh: :thumbsup:

[blue]

:welcome:

[Nicole in ATL]

I hope you continue to feel better. I had the same experience with my cysto/hydro...I did not have the relief that others have had after this procedure. Instead my symptoms were worse. I started the oxytrol patch for frequency/urgency after my surgery and this really helps (I am still on it now). Percocet also helped with the pain.

Despite this, I don't regret having the cysto/hydro b/c it showed problems with my bladder that were not apparent on an in-office cysto. It also helped confirm my diagnosis of IC and ruled out other things.

Take care,
Nicole

[catwoman_22]

Thank you everybody for welcoming me and sharing your stories with me. I don't personally know anyone else who has this disease, so it is nice to have a place like this for support. Before I had the surgery (I had not been diagnosed with IC yet, but he suspected it), my doctor told me I would probably feel alot better having the cysto/hydro, but it just made the pain a million times worse. Now I see that I'm not the only one who has felt worse after the surgery. I guess it just works different on everybody, maybe it just depends on the person. I also had a B&O Suppository in the recovery room after the surgery, along with Fentanol (sorry, don't know how to spell that!). So I didn't have any pain at all in the recovery room. But my doc didn't give me an RX for either one of those meds. He gave me a prescripton for Percocet after the surgery and it helped for a couple days, then I got alot worse. That is when I went to ER 2 nights in a row. Then I felt better again, and the Percocet controlled the pain I had. I am still in alot of pain, but it is tolerable now. Unfortunately, my doc would not refill my RX for Percocet, but he did give me Lortab (which give me headaches). I have an appt. on the 14th, so I may ask about the B&O Suppositories for the pain. Does anybody else have problems getting pain meds from their Urologists? Have any of you ever went to a pain clinic? Do I have to have a referral from my doc to go to a pain clinic? Sorry for all the questions, I'm new to all this. And thanks for all of your advice.

[Julie Smith]

Welcome Catwoman!!!!

Sorry to you're having a rough time. It's too long to wait until the 14th. Whenever I have a problem I always leave a message for the dr. and the nurse always trys to help and is very nice but I explain to her that I must speak to the dr. (afterall he is the only one that can prescribe meds) I must be insistent on request for meds and sometimes dr. will move my appt. sooner. There's no need for you to suffer. Afterall, the point of the call is meds, rights? He needs to know you're allergic and I doubt he'll have any trouble changing to another one, after all, he doesn't want you to suffer either.

Take really good care of yourself and get lots of rest. over the counter, azo standard, there's also another one, can't remember name,. help a lot with the burning.

Keep us posted, we care!
Julie:headbang: :yikes: :thumbsup:

[rachelm]

Catwoman,

I'm so sorry you're feeling bad. I don't think that at this time you should worry about getting to a pain specialist because often there is a month or more wait to get an appointment. After my hydro. my urogyno. gave me Lortab 10 which worked for a few days but then it wasn't as effective so he upped the dose a few more times. He told me that eventually I should see a pain dr after my recovery time if I was still having pain. Every one is so different in their reaction to all meds. so he should understand this and switch your meds. I do know that a lot of uros. get freaked out if they have to prescribe schedule 2 narcotics for more than just a week. The percocet and B&O were all schedule 2 that required a triplicate RX that you had to pick up.

I agree you should call your dr. immediately and be persistent until he gives you something that works. Sometimes it feels like we're too worn out to even fight for what we need and I understand that I've been through that before my current uro. By the 14 you may or may not need the higher pain meds. so I wouldn't suffer all that time --it's way too long!

I hope you get to feeling better soon!

Rachel

[ICNDonna]

If the ordered pain meds are giving you a headache, you definitely need to call your doctor and tell him that. He may be able to order something that won't have that effect.

Sending an encouraging hug,
Donna

[catwoman_22]

I think my urologist must be one of the ones that don't like giving narcotics. I have talked to him about it several times, but he says I should not need anything stronger than the Lortab by now. At first he gave me Lortab 5, then upped the dose to 7.5. It says to take 1 or 2 every 4 hours as needed. It helps if I take 2, but not 1. And I usually have to end up taking it every 4 to 6 hours. I try to go as long as possible without taking them since he has such a problem giving them to me. The nurse is even worse. I call and leave messages for her all the time, but she never returns my phone calls. When she finally calls back she tells me that I'm taking too much pain meds! I don't even take it as often as it says usually! I have told the nurse and the doctor that the Lortab gives me headaches, but they still keep prescribing it for me. That's why he gave me Percocet at first since Lortab gives me headaches. My family doctor gave me some headache medicine and he said I could take it with the Lortab, so hopefully that will help. If the doc continues to have problems prescribing meds, I guess I will have to look for another urologist (there is only 2 in town, and the other is horrible, I went to him first). Going out of town for a good doctor that will give me my medicine is worth the trip.

[rachelm]

Catwoman,

You might also start looking for a pain dr. It's helpful to know he's there for me when I do need to switch up my pain meds. If you look at the section in the handbook about pain it talks about the benefit of stopping the pain before it's too bad. I found that I was able to function better when I took my pain meds. at the first sign of pain and added another pill if I needed it within an hour until the dose was right. I was able to continue working and taking my grad class for a while like this which helped. I did still have a month that I had to go on sick leave but it would have been much more difficult without the strength dose that I needed. Now I'm completely off pain meds for the most part and occassionally I need one and am no longer afraid to take it because I know that's what it's there for. My nurse is very supportive of me being in control of when I do and do not need it and always reminds me when I'm disappointed that I have to take it that I won't have to forever. I prefer treating the pain to cycling downward in a pain cycle and being completely unable to function. I know that many dr. are afraid of prescribing narcotics but research shows that treating pain is not only necessary but it prevents further dammage.

I hope that you are able to find a uro and or pain dr. that understands this approach. I hope you get to feeling better soon.

Rachel

[catwoman_22]

Thanks for the advice Rachel. I am going to check out the handbook, especially the part about pain management. I have an appointment in a week with my Urologist. I am going to talk to him about the pain and let him know about the problems I am having with the nurse. She never answers when I call her extension, so I leave messages over and over again, and she still doesn't call me back half the time. If and when she calls back, she is very rude and insists I don't need meds. We don't have a pain doctor in town, but I am going to check for one in another town. If he can't control my pain, I will ask to be referred to one if a referral is necessary.

[rachelm]

CatWoman,

I think that's a good plan. I will be praying for you to find a good dr. to treat all of your symptoms. Please keep us posted. Oh also, I was going to ask you if you've tried pysical therapy. I have done it off and on and it has really helped me with my pain. I have learned many stretches and nerve glides that help relieve the spasms and my therapist even showed me how to teach Brian to help during a bad pain spell. He and I regularly did relaxation work and holding positions that allowed me to ease the intensity of my pain when I was really bad. There was still a night that we worked at it for 4 hours and did everything from adding an extra morphine to massage and deep breathing but still nothing broke the cycle so I went to the ER. They gave me a shot of morphine which helped but not much and then after begging them they gave me a B&O suppository which is a powerful drug for spasms with a strong narcotic. Within an hour I was getting relief. Since then my uro. gave me a rx for 20 to keep if my spasms/ pain got bad again. I used one for 3 more days which kept me out of the hospital and I haven't needed any more. I still have 17 just in case and they are listed in my emergency pain toolkit if other measures don't help. I'm sure I won't need them but I'm also taking them on my honeymoon with me just in case. I've got a notebook with all of my dr., meds., test results etc. that I keep with me when I travel or see a new dr. in the event that I have an emergency and am away from my dr. I have proof of my medical history.

I hope that you are able to find a caring dr. who will help you. I drive 45 min. out of my town to see my uro and my pain dr. I think it's well worth the drive and during flares I have my mom or fiance take me daily for bladder instilations. I have come to know them as a part of my family and I wish there were other offices around the country like theirs. It seems so unfair to me that not all dr. see the valididty of our pain so I hope that more dr. will begin to be trained concerning treatment of pain with IC.

I wish you the best. Keep us posted.

:)

Rachel