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  1. #1
    ICN Member
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    How long before I know if my Cysto and Hydrodistention worked?

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    Sorry I know this has probably been asked a lot but I had the procedure done Friday and my follow up isnt til middle of May. I feel good today but was just wondering how long before anyone noticed a difference for those the procedure worked for . I cant imagine going through it every 6 months after how painful it was
    Cindy

    Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

    Current medications:

    Mybetriq 50mg ( have been on this 3 years probably useless)
    Elmiron 100 mg ( supposed to be 3x a day)
    Also tecta as I have recurring stomach ulcers - I say the acid issues related
    Azo and prelief

    What I have tried and hasnt worked
    Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
    Also have IBS

    Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    By the time you recover from the procedure, you should have some idea whether it's going to help.

    Donna
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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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  3. #3
    ICN Member Aaarrrggghhh's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    I felt relief from pressure sensation straight away and after the urethral discomfort settled in about 3 days I felt the best I had ever.

  4. #4
    ICN Member my2boys99's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    For me, I didn't get back to my "baseline" for about 2 weeks. Then it started to get better. By 3-4 weeks, I had noticed a BIG improvement. It lasted a long time. I would have another hydro in the future if need be.
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  5. #5
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Cindy -- You and I are hydro/cysto twins! We had the procedure and were diagnosed on the same day. Man, the pain in the days after was horrendous! I was a mess until yesterday. Now I'm sort of back to my baseline and also wondering whether it will get any better. I am not on any other meds right now; just trying to follow the diet. I go back to the urologist to discuss next steps on Friday.

  6. #6
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    31fan...let me know what your urologist suggests. I don't think I've had enough of an improvement to justify going through the procedure again but I am going to see what the next few weeks bring before deciding. One issue I find depressing is that even after my medical benefits I am still spending 100 approx monthly on meds
    Cindy

    Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

    Current medications:

    Mybetriq 50mg ( have been on this 3 years probably useless)
    Elmiron 100 mg ( supposed to be 3x a day)
    Also tecta as I have recurring stomach ulcers - I say the acid issues related
    Azo and prelief

    What I have tried and hasnt worked
    Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
    Also have IBS

    Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

  7. #7
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    I had hydrodistention done in the middle of March so about 1 month ago. I was in quite a bit of pain for the first 3-4 days but by about 1 week afterwards, I started to notice a decrease in frequency and urgency. My pain levels have been steadily decreasing since then but have not yet reached pre-hydro levels. My frequency is now about 50% of what it was before the hydro.
    “Pain is inevitable, but misery is optional. We cannot avoid pain, but we can avoid joy.” ~ Tim Hansel

  8. #8
    ICN Member Pcoleary's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    I hope you're all starting to feel better. I have my first cysto/hydro scheduled for May 9th. I'm very nervous. I do not suffer from any frequency issues unless I'm in a MAJOR flare. I have pain daily.some days it's an 8 and others a 2 but, always some pain to remind me I have this disease.
    Is a hydro more effective for frequency then pain? That would make it pointless for me. I leave 6 weeks after the procedure for 15 days in Spain with my daughter and I can not risk making myself worse or causing frequency issues while there. I just want to have a pain free trip, if possible.
    I'd love thoughts from anyone who has done these procedures on whether or not it works on terrible urethra and bladder pain ( she does not want to stretch my urethra).
    Thanks!

  9. #9
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Urologist suggests I just try diet changes for now and see how things proceed. If I want to, he'll start me on Elmiron. I would say my pain is perhaps a bit less than before the procedure, but the frequency and hesitancy are about the same. I'm trying to be patient. Also ordered some of those Aloe capsules to try before I do the Elmiron. And I might try to get my psychiatrist to prescribe me some Valium to see if it helps with the annoying urethral irritation.

  10. #10
    ICN Member Aaarrrggghhh's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Hi pcoleary
    Mine is just pain also no frequency unless I'm flaring badly.
    My cystoscopy and distension did help my pain but also flared the urethra for a couple of days but no worse than normal. As long as it's a flexible scope. My cysto with a rigid scope had me in hospital on pain meds for 3 days. Good luck

  11. #11
    ICN Member Pcoleary's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Aaaaarrrrrggghhh, I'll ask my doctor about the type of scope. I know I'll be in pain afterwards but I'm hopeful that in a few days that will get better. My focus is to feel better for the trip. I'm still torn between waiting until after it to do this procedure :/
    31fan~ I follow the IC diet. I tried Elmiron for 5 months and it didn't help
    A bit less pain would not make it worth the pain and money the procedure takes.How long ago did you have it? Do you think your pain will continue to lessen?
    I drink 4 oz.'s of George's aloe a day and sometimes I think it's working. The same goes for the vaginal valium. It seems to take the edge off when I have urethral pain ( always at night for the most part!)

  12. #12
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    I am not positive but I feel a slight improvement when I have to hold my urine for a longer period of time. I used to feel a lot of pain when I had to hold it and I feel I can go slightly longer without being in pain but my frequency with is a nuisance is still exactly the same. My urine still feels acidic . This causes so much urethral pain for me so the recovery from the procedure itself was bad as my poor urethra still feels it. I dont know if I would go through it again for the bit of relief I have felt. I feel like I need to have a pain killer that would target my urethra pain . I see my urologist in May to discuss
    Cindy

    Diagnosed officially April 8th 2016 after 3 years of misery with Cystoscopy and Hydrodistention that showed bladder bleeds. Blood is always is urine

    Current medications:

    Mybetriq 50mg ( have been on this 3 years probably useless)
    Elmiron 100 mg ( supposed to be 3x a day)
    Also tecta as I have recurring stomach ulcers - I say the acid issues related
    Azo and prelief

    What I have tried and hasnt worked
    Oxybutynin, vesicare,Calcium Citrate 1000mg day Magnesium 500mg day
    Also have IBS

    Also numerous trips to ER and a former Urologist that wanted me to take antibiotics for 6 months as I must not know how to do a urine sample and there must be an infection

  13. #13
    ICN Member Pcoleary's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    cp2369
    That makes me think twice about taking the risk of this procedure before my trip, or ever. Urethra pain is what I suffer from daily already :/

  14. #14
    ICN Staff ICNDonna's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Quote Originally Posted by Pcoleary View Post
    cp2369
    That makes me think twice about taking the risk of this procedure before my trip, or ever. Urethra pain is what I suffer from daily already :/
    Have you looked at the AUA Guidelines For Treatment at the link in my signature below? You might find some things there that would help. If you feel good enough to enjoy your vacation, you might want to postpone the procedure, even though six weeks would very likely be long enough so you would at least be back to where you are now. It's something you need to decide for yourself. I just hope you can have a lovely time with your daughter --- I'd love to visit Spain.

    Sending gentle hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    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.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  15. #15
    ICN Member Pcoleary's Avatar
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    Re: How long before I know if my Cysto and Hydrodistention worked?

    Donna, I'll take a look. The whole point to having this procedure would be to have a pain free trip. If there's a possibility that it will worsen my symptoms I can't risk that.
    Especially if it could cause more frequency. I don't know how easy it will be to find bathrooms in Spain.
    What would you do?

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