Would like to hear from others who have struggled with interstitial cystitis. What has worked well for coping and treatment?
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Methenamine (Rx) and D-Mannose (over the counter) have been a good combo for me for the past four years. I started with two tablets daily of methenamine and two capsules daily of D-Mannose. After three years, my kidney function started going south and my doctors & I believe the methenamine is hard on them, so I was cut back to only half a tablet of methenamine per day (P.M.) and one capsule of the D-Mannose (A.M.). So far, so good. No bladder infections and one interstitial flare. The only caution with methenamine is to stay on top of your metabolic labs fairly often, especially if you're taking a full dose of the methenamine daily. Best to you!
I too had/have this problem. I found the Methenamine to be very hard on my stomach in long term care. I was getting UTIs too. One became a more rare bacteria. I started a regimen of natural Oreganol, Olive Leaf, and Activia, Kefir, change the Microbiom. Got a doctor to evaluate the bloodwork and got on a vaginal versa based estriol/progesterone topical. D-Mannose is great for Ecoli but not gram - as much. You can take a lot of D-mannose as it is a common sugar molecule.
When I was taking the Methamine I took a 1/4 dose and it worked. Thats the dose in most of the over the counter remedies. I can't stress a quality Kefir and Activia enough. Good luck.
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In addition to my comment above, I did go on a small dose of Alprazolam which seems to quite the urethra. Some say Valium does the same. And I only do the Oregano and Olive leaf now once a month. Its the probiotics that is every day.
Thanks for all this info. So very helpful. I use olive leaf for BP management. Will check into oregano. Can you share a bit more about the vaginal estrogen? My provider RXd estradiol and I’m not too confident on this approach due to known risks.
The oregano is Oreganol ( brand). I was given Estrace cream for a long time. That is Estradiol a better form of bio identical estrogen. I found the Brand name to be better than the Generic so I got my insurance to allow it but I still paid a hefty fee out of pocket. ( but worth it) However it was unopposed estrogen .
I had thickening of the lining of the uterus so I went to see a Naturopath doctor and he prescribed C-Estriol 1mg/Prog20mg/GM CREA. He treats the whole body and I had a tone of bloodwork. I had them put it in a pump style delivery system. I use a little tab in the morning and evening and just use my finger to place it. That is what my script says. Your doctor should make it work for you. If not, find a good compounding pharmacy in your area and they can tell you who prescribes things like this to them and go see a different doctor or ask your doctor to learn from the pharmacy how to prescribe it. ( This advise is not intended to treat your specific situation just mine ). Feel free to reach out if you have anymore questions. I am so thankful for those who have shared info for me.
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