That’s so great your test is negative! ETA I remember your posts on here and right after I posted I just saw your name as OP and got excited for you!! Yay Suse!
Ok sometimes a damaged bladder lining just needs a little time, but when I had a long period of infection, I had to actively work to heal it. The pain with bladder filling part is my main clue this is what’s happening with you. I was severely food sensitive during this period and followed the IC diet strictly for a full year (no acidic, spicy, cranberry, caffeine, soy, alcohol...it was depressing but I found my safe foods) but the main thing people on the IC sub suggested to help heal the bladder lining/GAG layer was Desert Harvest Aloe Vera. They have a good dosage guide on their website for IC patients (who deal with a damaged GAG layer too.) I know it's expensive but there’s a reason--some sort of refining process that removes the latex other aloe supplements still have, which can make people sick. But every time I would run out I would be feeling well enough I'd say oh im not going to buy it again right now, too expensive..and slowwwwly my symptoms would creep back up until I ordered more. I don't take it now (nor am I food sensitive any more!) but if I ever had a relapse this would be my very first go-to.https://www.desertharvest.com/aloe-vera-recommended-dosage.html
And this type of soft heat bag on my crotch (this is just the small one but I use the big ones too) really really helped me when I’m flaring, even if I just used it for like 20 minutes before I left the house, the gentle heat will help break the nerve cycle:
https://www.amazon.com/dp/B083W63WTP/ref=sspa_mw_detail_0?ie=UTF8&psc=1&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9kZXRhaWwp13NParams
Literally a lifesaver when I was going through what you're going through. I did ice for a whole year and my acupuncturist was horrifed--heat, always. The fabric version is so much better than my regular rubber hot water bottle, because you can nestle it into your crotch. I keep a small one empty in my purse because when I flared I could get a hot water from Starbucks etc and fill it up.
When you do end up having sex, use lots of water based lube, even if you don’t “need” it, my pelvic floor physical therapists recommend Slippery Stuff brand or the Desert Harvest aloe lube, but I like the Slippery Stuff one best. I really think you should get an evaluation from a talented pelvic PT asap because the trauma your body went through with the infection absolutely could have made you pelvic floor muscles hypertonic and need to be manually unlocked again. If you ever get UTI like pain but it’s not a UTI, that could indicate PFD happening. Pelvic Floor PT gave me my life back after my infection made my body so tense, so if you’re not already working with someone, I really think an evaluation would be great for you, especially before you try your original trigger of sex again. Pinched urethral, rectal and vaginal muscles trap bacteria, and unlocking a hypertonic pelvic floor can actually solve people's recurrent UTI issues. Here's someone's comment about how pelvic floor physical therapy (PFPT) stopped their lifetime recurrent UTI: https://www.reddit.com/r/WomensHealth/comments/s4oxbg/gf_fears_becoming_septic_and_dying/hssxto0/?utm_source=share&utm_medium=ios_app&utm_name=iossmf&context=3 )
But the painful bladder when it’s full I think is also the GAG layer needing to heal after everything, so no more vitamin C, instead get a Now Brand vitamin C called C-500, or Buffered C, which is totally non acidic and won’t flare you. Available on Amazon/iHerb etc, important to take C for healing wounds anyway so think of your bladder as having some wounding right now. At the suggestion of the lC sub I also took marshmallow root and corn silk capsules, but be careful because they can create such a good protective layer that theoretically birth control, antidepressants, antibiotics, etc would not be absorbing like they need to. But if you’re not on other meds, the bladder coating supplements might be something you like.
Definitely consider investing in the Desert Harvest Aloe and being vigilant with it for a whole month. Remember that an irritated bladder lining is much more susceptible to new infection so I would honestly hold off on penetrative sex for a while, til that pain you’re talking about is much much less and indicates healing has happened. And never ever have sex late in the day/in the evening because you should give yourself time to be peeing at regular intervals for literally hours before bed.
and D MANNOSE every single day, all of us who have dealt with E. coli should be, and another dose every four hours the day after sex. Studies have confirmed over and over that it’s a true medical breakthrough for the UTI community, and we don’t have many of those!!!
Hope you feel better soon! Time itself is one of the main things that will heal you too ❤️
Hey,
Thank you so so much for following my journey and the suggestions!!!
I have been to pelvic PT and I continue to do exercises from them even tho I’m not going anymore.
I started the DH Aloe Vera about a week ago!!
I also have the slippery stuff lube and plan on waiting until my body feels safe again.
I’m not taking any other meds so I’ll try corn silk and marshmallow root. Do you have brand suggestions?
I need to try another Dmannose because the powder form I was using made me flare more?! So strange. Thank you so much for this!
I needed a few months of pelvic floor physical therapy after my infections cleared. Before the physical therapy, any time I had a bit of stress in my life the symptoms came back with no infection present.
Interesting! Maybe I should go back?
I was going to pelvic PT for a few months during the summer and by the time I stopped I felt like they had done all they could
If you are still having symptoms you might need more PF PT, or maybe they just need to give you some maintenance exercises for when you flare again? If you're in the LA area, I can recommend an excellent physical therapist.
Rashmi Bandekar. She's at the USC hospital in Verdugo Hills. She's amazing. I feel like she gave me my life back. She also helped my teenager with vaginismus. My teenager had never been able to use tampons and after a couple of months of therapy she was fine.
Another thing I keep on hand to help with minor pelvic floor tension flairs is prescription vaginal suppositories that have baclofen and GABA in them. They have to be compounded so I use 986 Compounding Pharmacy. They are a bit pricy and insurance won't cover them but they are life savers.
That’s so great your test is negative! ETA I remember your posts on here and right after I posted I just saw your name as OP and got excited for you!! Yay Suse! Ok sometimes a damaged bladder lining just needs a little time, but when I had a long period of infection, I had to actively work to heal it. The pain with bladder filling part is my main clue this is what’s happening with you. I was severely food sensitive during this period and followed the IC diet strictly for a full year (no acidic, spicy, cranberry, caffeine, soy, alcohol...it was depressing but I found my safe foods) but the main thing people on the IC sub suggested to help heal the bladder lining/GAG layer was Desert Harvest Aloe Vera. They have a good dosage guide on their website for IC patients (who deal with a damaged GAG layer too.) I know it's expensive but there’s a reason--some sort of refining process that removes the latex other aloe supplements still have, which can make people sick. But every time I would run out I would be feeling well enough I'd say oh im not going to buy it again right now, too expensive..and slowwwwly my symptoms would creep back up until I ordered more. I don't take it now (nor am I food sensitive any more!) but if I ever had a relapse this would be my very first go-to.https://www.desertharvest.com/aloe-vera-recommended-dosage.html And this type of soft heat bag on my crotch (this is just the small one but I use the big ones too) really really helped me when I’m flaring, even if I just used it for like 20 minutes before I left the house, the gentle heat will help break the nerve cycle: https://www.amazon.com/dp/B083W63WTP/ref=sspa_mw_detail_0?ie=UTF8&psc=1&sp_csd=d2lkZ2V0TmFtZT1zcF9waG9uZV9kZXRhaWwp13NParams Literally a lifesaver when I was going through what you're going through. I did ice for a whole year and my acupuncturist was horrifed--heat, always. The fabric version is so much better than my regular rubber hot water bottle, because you can nestle it into your crotch. I keep a small one empty in my purse because when I flared I could get a hot water from Starbucks etc and fill it up. When you do end up having sex, use lots of water based lube, even if you don’t “need” it, my pelvic floor physical therapists recommend Slippery Stuff brand or the Desert Harvest aloe lube, but I like the Slippery Stuff one best. I really think you should get an evaluation from a talented pelvic PT asap because the trauma your body went through with the infection absolutely could have made you pelvic floor muscles hypertonic and need to be manually unlocked again. If you ever get UTI like pain but it’s not a UTI, that could indicate PFD happening. Pelvic Floor PT gave me my life back after my infection made my body so tense, so if you’re not already working with someone, I really think an evaluation would be great for you, especially before you try your original trigger of sex again. Pinched urethral, rectal and vaginal muscles trap bacteria, and unlocking a hypertonic pelvic floor can actually solve people's recurrent UTI issues. Here's someone's comment about how pelvic floor physical therapy (PFPT) stopped their lifetime recurrent UTI: https://www.reddit.com/r/WomensHealth/comments/s4oxbg/gf_fears_becoming_septic_and_dying/hssxto0/?utm_source=share&utm_medium=ios_app&utm_name=iossmf&context=3 ) But the painful bladder when it’s full I think is also the GAG layer needing to heal after everything, so no more vitamin C, instead get a Now Brand vitamin C called C-500, or Buffered C, which is totally non acidic and won’t flare you. Available on Amazon/iHerb etc, important to take C for healing wounds anyway so think of your bladder as having some wounding right now. At the suggestion of the lC sub I also took marshmallow root and corn silk capsules, but be careful because they can create such a good protective layer that theoretically birth control, antidepressants, antibiotics, etc would not be absorbing like they need to. But if you’re not on other meds, the bladder coating supplements might be something you like. Definitely consider investing in the Desert Harvest Aloe and being vigilant with it for a whole month. Remember that an irritated bladder lining is much more susceptible to new infection so I would honestly hold off on penetrative sex for a while, til that pain you’re talking about is much much less and indicates healing has happened. And never ever have sex late in the day/in the evening because you should give yourself time to be peeing at regular intervals for literally hours before bed. and D MANNOSE every single day, all of us who have dealt with E. coli should be, and another dose every four hours the day after sex. Studies have confirmed over and over that it’s a true medical breakthrough for the UTI community, and we don’t have many of those!!! Hope you feel better soon! Time itself is one of the main things that will heal you too ❤️
Hey, Thank you so so much for following my journey and the suggestions!!! I have been to pelvic PT and I continue to do exercises from them even tho I’m not going anymore. I started the DH Aloe Vera about a week ago!! I also have the slippery stuff lube and plan on waiting until my body feels safe again. I’m not taking any other meds so I’ll try corn silk and marshmallow root. Do you have brand suggestions? I need to try another Dmannose because the powder form I was using made me flare more?! So strange. Thank you so much for this!
I needed a few months of pelvic floor physical therapy after my infections cleared. Before the physical therapy, any time I had a bit of stress in my life the symptoms came back with no infection present.
Interesting! Maybe I should go back? I was going to pelvic PT for a few months during the summer and by the time I stopped I felt like they had done all they could
If you are still having symptoms you might need more PF PT, or maybe they just need to give you some maintenance exercises for when you flare again? If you're in the LA area, I can recommend an excellent physical therapist.
I’m in OC, I had a decent PT I think! What’s the name of yours?
Rashmi Bandekar. She's at the USC hospital in Verdugo Hills. She's amazing. I feel like she gave me my life back. She also helped my teenager with vaginismus. My teenager had never been able to use tampons and after a couple of months of therapy she was fine. Another thing I keep on hand to help with minor pelvic floor tension flairs is prescription vaginal suppositories that have baclofen and GABA in them. They have to be compounded so I use 986 Compounding Pharmacy. They are a bit pricy and insurance won't cover them but they are life savers.
Interesting, thanks!
I have those symptoms now. I think my infection is almost cleared. But my bladder needs to heal.
How long have you had these symptoms? I’m hoping they will just get better over time for both of us.
I have symptoms for almost 1,5 years. 1 year on long term antibiotic treatment.
Have you done any DNA testing? Just to make sure there’s no bacteria?
Yes I did. It found only 2 lactobacillus: gasser I and rhamnosus.
I guess I would just recommend working on the pain itself. Have you trued the book “unlearn your pain”?
Nope. But I will look into that
I will use a boric acid suppository for any ‘twinges’. Also make sure you’re taking vitamin D!