Pain worse after hydrodistention?

[Baba Yaga]

I had cysto hydro one month ago. Before that I was not familiar with "bladder as glowing orb of pain".

I assume the bladder gets temporarily damaged by the hydro expanding it and has to heal.

Did you have more pain after hydro? If you did, how long did it take to fade?

(I am currently undergoing weekly DMSO -- 50% -- but the quantum leap in pain followed the hydro and preceded my first dmso instillation)

[SandyRN]

I had a lot more pain immediately after my hydro and for several weeks afterward. I thought I was a freak because I hurt SO badly. Eventually I did get relief from the hydro, and it lasted for about 9 months. Hopefully this will be the case for you.


Sandy

[KeeKee]

Hi,

After my hydro I thought I was going to die! I had a significant amount of pain and was bed-ridden for about 6 days. I had to take Loritab for about a week. I was so upset because my fear was that the procedure had damaged my bladder so much that it wouldn't heal and that I would be stuck feeling the way I felt for the rest of my life. Even my doctor said that most people don't have that much pain. In fact, he said many go back to work in a couple of days. But, I DID get better....much better. It took about 5 weeks for me to get back to normal, but the point is I did return to the way I felt prior to the hydro. I had a short remission of about a month (after the 5 weeks) and then I started on Elmiron and Atarax and have been getting continually better since. The worst part of my hydro was my fear that I had damaged my body and would be at that level of pain forever. But, my bladder healed itself back to what's normal for me and although it didn't put me into a long-term remission, it did give me a definite diagnosis of IC and now I am doing quite well on the other meds. Hope my experience helps you a bit! Take care!

[ICB]

You are right; it does take the bladder time to heal - usually 6 to 8 weeks after the proceedure. If you are in pain, make sure that your doctor is giving you adequate pain medication. Moreover, if you are still experiencing any bleeding - please go back to your doctor immediately. Otherwise, most IC patients find that even if they do not improve from the proceedure itself - they do start to improve because they start a treatment regimen for their IC.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[Baba Yaga]

Thanks you guys!

I found a previous thread on this and read that also.

Anyone else with input, please add yours too.

But your answers have helped me calm down a bit -- I have had KeeKee's fears, plus concerns about the DMSO. Once I'm better ( :pray: ), I will be so happy I'll want to get my doctor a present.

[coco1234]

:kissing: My first hydro was about 2 weeks ago and I am still feelin awful, evertime I pee it feels like Im having a contraction, I dont know if I am going to do this again if I dont feel better soon!! Good luck, and please know you are not alone!!!!

[chernobyl]

I had mine done the day before Christmas Eve and for more than a month felt truly horrible, finally the level has subsided to where it was before the procedure. I still feel bladder irritation 24/7 but the difference is now I can hold on for much longer and I can wear jeans again and it no longer keeps me awake so I think it helped somewhat. :)

[foxkaren]

I'm wondering if anyone has had the cystocopy(sp?) alone without the hydro-distension -- and if so, was the pain level worse, after the test was done?

[Barbienet8]

Hi,
I had a cystoscopy without the distention procedure. The actual test wasn't as horrible as I thought, but when the Uro came at me with the scope, all I could picture was a sword swallower looking for the wrong end. The worse part was when my Uro filled my bladder with water until it was painful. I then had to go the the bathroom and pee it out.....OHHHHHHHHHUGGGGGGG!!!! It felt like razor blades were mixed with my urine. I am typing this posting with a heating pad between my legs. I hope this pain ends soon!!!!
I am trying to keep my sense of humor but it's :headbang: really hard.

[allmart]

I had 2 cystoscopies as a teenager when they were trying to find out why I was having so many recurrent UTI's. After my first one, the uro told me that my urethral opening was uneven and maybe that was why the bacteria was getting trapped. The second one they did when I was already in excrutiating pain. I screamed bloody murder when they put the cath in. After that one, the uro said that my actual urethra was infected and if this pattern didn't stop they were going to have to dilate my urethra. I'm so glad I refused to have that procedure done. Who knows how much worse my IC would be now! Rarely do I get the razor blades and burning-I never would get that with my UTI's as a teenager. However, since my hydro/cysto and the DMSO cocktail the uro installed after it, I have had burning and razor blade feelings on and off. Unfortunately they're back on this morning :(

[pingpong]

Love the comment about the swordswallower! :D Try not to lose your sense of humor - sometimes it's the only thing that helps.

[Baba Yaga]

allmart, how long ago was your cysto/hydro?

I hope you feel better soon.

[allmart]

It was done on Friday, January 27th. I'm p'd off at my uro right now. I called them yesterday morning because I was in excrutiating pain yesterday and they never even called me back-and that was after they bounced me between 3 of his different offices. I just don't understand why one of the other 15 doctors in his practice couldn't have helped me! Yesterday was so bad that I broke down crying to my boss about the pain and how I'm just sick of it. It's really starting to wear me down. I was supposed to enroll back in school because my company pays 100% tuition for me, but I can barely get through the work day let alone take a class. It's just getting to me because that was one of my goals I set for a professional development plan with my boss. I'm just so frustrated :headbang:

[Baba Yaga]

allmart, I think you are like me -- one of the people who was/is slower to bounce back after this procedure. Like you, I am also getting DMSO after. (And I also felt blown off my my Dr.'s Office when calling about my pain a week later -- I had to double check your location in case we were being treated by the same office, lol). It doesn't seem like Dr.'s expect the recovery period to be as long as your or mine has been.

I simply didn't return to work at a full level, and got more time off to stabilize -- which is not a option everyone has.

My hydro was 1/3 and my dmso started two weeks after that. Based on how I am doing, I think you will start feeling better soon. Make sure you are getting adequate sleep, and also try to be as strict as possible with your diet right now. For me that has meant water with pear juice, almond milk, ezekiel cereal, potatoes with butter, etc. with only slight straying into more risky foods. I will have to do my real experimenting later.

You may have to accept a delay in the things you planned to do, or in a return to your previous functioning. I think it is just taking longer for you, like for me.

Thank you to all the other posters with previous experienced who posted here and helped me calm down about this a bit.

[allmart]

It's good to know you're not the only one struggling with the recovery. My uro insisted on doing the DMSO cocktail at the end of my hydro/cysto and I go back in Friday for another installation of it. My hydro/cysto was on a Friday and I returned to work on Monday-not a good idea! I had to take another day off the Thursday following to make up for rushing back into things. I had been working overtime before this, including the weekends and can't do it anymore. I feel like I'm letting down my boss and my group, as I am basically a glorified secretary for a very large corporation. Right now I am supporting over 80 people and have been very lucky that my boss is an incredibly nice man. When he got in this morning the first thing he did was see how I was feeling and if I was any better than yesterday when I started bawling at my desk. I tend to think I can take on the world and to have something like this slow me down is killing me. I have definitely noticed the impact my stress and emotions have on my level of pain. I called my uro's other office this morning and they are supposed to call me back-we'll see. He doesn't seem to believe how much pain I'm in. I don't know if you saw any of my other posts, but he practically told me that I couldn't have IC because he was able to distend my bladder to 1000 cc's and there were only 2 bad spots in my bladder at that point. I had asked him about physical therapy and TENS before he did the procedure and he said that I shouldn't get ahead of myself. I wish I had said, well I know it's not your health in the balance here, but I like to be proactive. Did they show you the pics of your bladder after the hydro/cysto? If so, how bad did they think it was and how much were they able to distend you? :grouphug:

[Baba Yaga]

Allmart, I see my doctor today, and was planning to ask a related question -- how small I was at first -- so I will ask about the max distention also. What I do know is that I am a mild case. I didn't have Hunner's ulcers, and my bladder didn't look extreme to me in my pictures. My pain problems are not as extreme as some other IC sufferers either -- except maybe now after the hydro, and that is fading (knock wood).

I also didn't have a serious frequency problem.

[allmart]

I now HATE my uro. Just got off the phone with him a few mins ago and he refuses to prescribe any valium for the pelvic floor stuff and said he's not comfortable prescribing any more narcotic pain killers for me. Of course, he still wants to see me on Friday to see if I have a UTI. I just don't understand why he's being like this. I feel like he doesn't believe a word coming out of my mouth. Do these doctors not read the research that is out there about IC and PFD??? Because I have more pain now than before the hydro/cysto, he said, so the DMSO didn't work? I thought it takes 6-8 installations for a full therapy of it?? Why do all my doctors think that 1 rescue treatment should solve my pain? That's what my gyno thought. The uro thinks 1 DMSO cocktail immediately following a hydro/cysto should solve my pain too??? I'm stuck at work right now and already had an anxiety attack and cried my eyes out in front of about 5 people... what a wonderful day! :cussing: :mad: :headbang: :cussing:

[swarr]

Founder & President




Join Date: Mar 2000
Location: Santa Rosa, CA USA 95409
Posts: 897 DMSO - Research Shows Possible Damage to Bladder

--------------------------------------------------------------------------------

Because this comes up so often, I thought I'd reprint an article which appeared in our newsletter in 2002. Please note that DMSO, as a therapy for IC, is falling out of favor due to the success of the newly used "rescue instillations" which "numb" rather than irritate the bladder. DMSO can provoke intense pain and, for this reason alone, it is worth asking your doctor about using a "rescue" instillation with hep, lidocaine, sodium bicarb in lieu of a DMSO cocktail.

AUA Annual Meeting 2002 - UPDATE ON DMSO
Research now suggests that DMSO has the potential of causing damage to the muscle of the bladder when used in higher dosages. Lower dosages are recommended.

Presented at the 2002 AUA conference "DMSO - Does it change functional properties in the bladder wall" (Diethild Melchior*, C Subah Packer, Tomalyn C Johnson, Martin Kaefer, Indianapolis, IN) tested various concentrations of DMSO on strips of bladder muscle to try to determine what, if anything, the DMSO did to muscle. They found that DMSO triggered intense muscle contractions and, at doses higher than a 30% solution, caused what appeared to be long-lasting contractions that could be irreversible. Since the normal dosage used for humans is 50%, researchers suggested that the dosage be reduced to, at most, 25% to avoid any possibility of muscle damage.

This study, by far, elicited the most animated discussions of the IC research studies that day. One physician from the Cleveland Clinic said that his clinic no longer used DMSO and that they felt that of the patients who required bladder removal, many had DMSO induced damage to the bladder from long term use. This was a very bold statement for the conference. Yet, other doctors suggested that the study was "amateurish." They felt that testing bladder muscle was not an accurate assessment of how a whole bladder would respond to DMSO. They suggested that further studies were needed before they would stop using DMSO.

If there was consensus in this discussion, it was that DMSO should only be used in one or two series of treatments and that further long term use, particularly if the patient had little response to prior treatments, would likely be ineffective as well as cause potential damage to the bladder muscle. With respect to the dosage of DMSO, many commented that they already used DMSO cocktails which reduced the overall dosage to around 35% rather than 50%. This new research suggests that a dosage of 25% seems to be prudent.
__________________
Worrying does not empty tomorrow of its troubles. It empties TODAY of its strength!

Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

icnmgrjill
View Public Profile
Send a private message to icnmgrjill
Visit icnmgrjill's homepage!
Find More Posts by icnmgrjill
Add icnmgrjill to Your Buddy List

12-03-2005, 01:58 AM



I found this by Jill.


Sandy

[allmart]

I actually read that before and asked my uro if it was a good idea to do the DMSO cocktail with the hydro/cysto because I saw that it could induce extreme pain. He said from his experience his patients found it beneficial. He also said that his office does not perform rescue treatments because they don't see the benefits. I did go through 2 rescue treatments at my ob gyn after my potassium test, and didn't help really. They won't do any more because they swear that I need a laparoscopy to check for endometriosis, even though I've only been on Elmiron a lil over a month along with the diet. From everything I read on here, you all don't necessarily get relief that quick. The ob gyn wouldn't even prescribe amitryptiline and was unaware of it's use in IC. I did just make an appt with the nurse practitioner that is on the ICA's physician list. When I called, the receptionist told me that the Dr. likes to have IC patients see the nurse first. I was just elated when the receptionist even knew what IC was! I just want the pain to go away... She managed to fit me in on Friday! I just don't want to wind up in the ER with pain. I feel like no one believes me anymore and I'm pill seeking. That's just NOT the case, why won't they listen to me? Thanks for letting me vent... it's been a BAD day.

[swarr]

allmart,

I want to say I am not an expert at this. I know that alot of people are helped by the elavil (amitryptiline alone). I know I was ready to have my bladder removed! I am much much better now. I started on elmiron and elavil (50MG) in september 05. I noticed a difference I think the second or third day (probably because of the elavil)> I have never had any rescue treatments. My uro isn' to bright in the IC department. He did prescribe elmiron and elavil though. I think you are on the right track with the new Doctor or nurse practitioner since you got it from the ICA. That's what I was going to do if I didn't see results. I felt BAD! I got better,you will too. Hope this helps.

Sandy

[Baba Yaga]

allmart, what were your symptoms originally before your cysto/hydro? What made YOU suspect you had IC?

[allmart]

What originally made me suspect that I had IC was after my gyno had me fill out the symptoms survey sheet. I way underestimated my symptoms on it because I guess I was embarassed. I still fell within the guidelines to recommend further testing. They scheduled the potassium test for 2 days later. That night I came home and found this site and started reading the patient stories. There is one on there that sounds like I could have written it. I had chronic uti's as a teenager and had already had 2 cystos by the time I was 18. No one ever mentioned IC to me, nor had I ever heard of it until the gyno brought it up. I have had constant pelvic pain for the last 7 months, painful sex, somewhat excessive frequency/urgency, and started to think back to periods in my life where I was in the ER 3 different times misdiagnosed when I came in with severe lower abdominal (pelvic) pain. Once I had a PCOS diagnosis I thought that was why I had pain, there were cysts rupturing right? Next, I was diagnosed with fibromyalgia over 6 years ago and also have IBS, which are commonly seen in IC patients. I didn't realize how often I was peeing until I made myself pay attention to it the next day. I realized I went to the bathroom 8 times in 9 hours. I also had a series of what were thought to be bad UTI's that antibiotics just didn't seem to help and one where the urinalysis came back negative. Also kidney stones but was told they were too small to cause me any pain. Once I put it altogether it made complete sense and then had the positive potassium test that sent me into the flare from hell even with a rescue treatment. How did you first figure out you had it?

[Baba Yaga]

allmart, I didn't know I had it until laparoscopy and cysto/hydro. My doctor suspected I had it and I had no idea what it really was. I had been very invested in the idea that I had scarring adhesions inside that were causing my pain and that the surgery would completely fix me. (I had had this situation 17 years ago, and I was fixed following that laparoscopy). I did know that my bladder was somehow involved though. So after my hydro, he confirmed it.
Later he referred to it as "possible interstitial cystitis", which seemed to be backtracking, but he is treating me for IC as if I had it, and there is little other explanation for my symptoms. I asked today about my hydro, and the record wasn't in my file, but he thought he remembered my bladder maxing out at about 500.

[allmart]

I'm going to go tomorrow and see what the new nurse and doc say and go from there. Hopefully they will be more understanding and informed than the other doctors. I had to reduce my amitryptiline back down to 25 mgs because I'm having a hard time functioning in the mornings after I took 50 mgs even with a full 8 hours of sleep. I still have to get up 1-2 times a night to pee even with taking it. I just want to have the control back in my life. Those of you who have been dealing with this for years have my utmost respect. I know the beginning can be the roughest-at least I hope so! Thanks for letting me vent yesterday-it helped a lot. I think I would have been popping xanax and going home early from work yesterday if I didn't have this site and all you wonderful people to lean on. Thank you! :love: guys

[allmart]

Just wanted to say I found an absolutely wonderful nurse practitioner!!! She already prescribed physical therapy and referred me for pain management. I go for urodynamics in 2 weeks. I now have an official diagnosis of PFD now. They also let me know about a clinical trial about the link between IBS and IC. They are researching the overgrowth of bacteria in the intestines and how it may spread to other organs like the bladder. My nurse practitioner actually runs a support group in St. Louis too! It's not listed on any IC websites. I'm just happy to feel they actually have some direction in my treatment.