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Karen Stromer
@kastro

Posts: 4
Joined: Aug 03, 2017

Dysuria, burning urination

Posted by @kastro, Sun, May 27 4:42pm

I have extreme burning when I urinate & am now approaching 2 yrs with no resolution! I really have no discomfort other than awful burn which happens when I urinate & is always confined internally. It usually takes some time for this burning sensation to subside. I have no itch, discharge, odor or bleeding. Urine cultures reveal no UTI or other infectious conditions & vaginal swab ruled out bacterial infection. I am postmenopausal, type 1 Diabetic with Heart Disease. Urology prescribed daily use of estrogen cream (Estrace), but it hasn’t helped much.
I urinate a lot because I’m on Diuretics, so I’m miserable and this condition has been going on way too long! Can anyone offer alternatives or suggestions? Is there another vaginal moisture supplement, cream, lubricant or homeopathic remedy?

REPLY

@kastro, I am so sorry that you have to go through this. It is extremely frustrating to have something that cannot be diagnosed. Have you had your kidneys checked out thoroughly? I am no doctor but you seem to have checked out all of the things that are more urology related. The other thing I would run by you is to ask if you have been to a urogynecologist? I had another issue with my bladder that the urologist and the OB/GYN were unable to deal with. I was so impressed by the level of knowledge and how the urogynecologist seemed to know immediately what was wrong. I use estrace cream 3 times a week and it does help with minor irritation and keeping the tissue in better shape but I think the burning sounds more severe. I just wonder if the Diuretics are causing you some issues that the normal tests don't pick up. So these are two things I would suggest based upon my 2 year long saga with bleeding that no one could diagnose. I too am postmenopausal (age 63) and so the bleeding was very disturbing and unpredictable. After having surgery I have had no issues but it took two years to figure it out. I have found this discussion group to be very helpful so I hope you can get some ideas from others as well. The moderators are also very good at getting you in touch with people who have similar issues or who might offer guidance. So you are definitely on the right track in posting your issue here. I wish you the best.

@gailg

@kastro, I am so sorry that you have to go through this. It is extremely frustrating to have something that cannot be diagnosed. Have you had your kidneys checked out thoroughly? I am no doctor but you seem to have checked out all of the things that are more urology related. The other thing I would run by you is to ask if you have been to a urogynecologist? I had another issue with my bladder that the urologist and the OB/GYN were unable to deal with. I was so impressed by the level of knowledge and how the urogynecologist seemed to know immediately what was wrong. I use estrace cream 3 times a week and it does help with minor irritation and keeping the tissue in better shape but I think the burning sounds more severe. I just wonder if the Diuretics are causing you some issues that the normal tests don't pick up. So these are two things I would suggest based upon my 2 year long saga with bleeding that no one could diagnose. I too am postmenopausal (age 63) and so the bleeding was very disturbing and unpredictable. After having surgery I have had no issues but it took two years to figure it out. I have found this discussion group to be very helpful so I hope you can get some ideas from others as well. The moderators are also very good at getting you in touch with people who have similar issues or who might offer guidance. So you are definitely on the right track in posting your issue here. I wish you the best.

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I appreciate your comments Gail! Thanks so much….

Have you been checked as well for ureaplasma? It's not too common however it is one bacteria not usually checked on during a normal UTI check. It can cause havoc.

@sjv1968

Have you been checked as well for ureaplasma? It's not too common however it is one bacteria not usually checked on during a normal UTI check. It can cause havoc.

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Hello @sjv1968 and @kastro– Welcome to Mayo Clinic Connect. Thank you to both of you for posting.

@sjv1968, if you don't mind sharing, was ureaplasma something you had to endure?

Yes, it caused me a bad case of urethritis. It's a special lab test that has to be run to find it however it doesn't always cause problems in healthy people.

Are you seeing a doctor at Mayo?

@dreema

Are you seeing a doctor at Mayo?

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Not in regards to the ureaplasma any longer. Doxycycline took care of it.

Kastro, I’m so sorry you have to deal with this – it is awful. I have had two flares of interstitial cystitis that cause terrible burning with urination, but no infection. Has any doctor checked you for that? Here’s what helped me. Sorry the list is so long!
1. At least two cups of marshmallow root and leaf tea (unsweetened) very day (I buy it online).
2. I bought size 0 empty vegetable capsules and filled them with 1/8 tsp. Baking soda and took them every night at bedtime with water for a couple weeks to help get the urine to be less acidic. This helped so much!
3. Oil of oregano gel caps – one every day. I got the Solaray ones online.
4. Lots of water all day long.
5. No sugar or flour.
6. No acidic foods. That includes anything even closely related to tomatoes, berries, pineapple, anything lemon. The only fruit I ate was apples. I think bananas are okay, I just don’t like them.
7. Absolutely no caffeine. That means no coffee or tea, even decaf. No green tea for sure. Herbal tea that’s caffeine free is ok.
8. A heating pad or hot water bottle felt good sometimes, other times it didn’t.
9. I didn’t eat much during this time because every food was suspect in my opinion. But, my bladder healed and I got well again.
No doctor helped me with this, I just read everything I could find and figured out what worked for me. I pray that this info will help you and someone else.
Take care,
Andi

@dreema

Are you seeing a doctor at Mayo?

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No, I'm not seeing a Mayo MD for this condition. I live in Colorado. I was at the Rochester Mayo for a FORMA Tricuspid implant & will continue to go back for 3 yrs for re-checks.

@andilynn

Kastro, I’m so sorry you have to deal with this – it is awful. I have had two flares of interstitial cystitis that cause terrible burning with urination, but no infection. Has any doctor checked you for that? Here’s what helped me. Sorry the list is so long!
1. At least two cups of marshmallow root and leaf tea (unsweetened) very day (I buy it online).
2. I bought size 0 empty vegetable capsules and filled them with 1/8 tsp. Baking soda and took them every night at bedtime with water for a couple weeks to help get the urine to be less acidic. This helped so much!
3. Oil of oregano gel caps – one every day. I got the Solaray ones online.
4. Lots of water all day long.
5. No sugar or flour.
6. No acidic foods. That includes anything even closely related to tomatoes, berries, pineapple, anything lemon. The only fruit I ate was apples. I think bananas are okay, I just don’t like them.
7. Absolutely no caffeine. That means no coffee or tea, even decaf. No green tea for sure. Herbal tea that’s caffeine free is ok.
8. A heating pad or hot water bottle felt good sometimes, other times it didn’t.
9. I didn’t eat much during this time because every food was suspect in my opinion. But, my bladder healed and I got well again.
No doctor helped me with this, I just read everything I could find and figured out what worked for me. I pray that this info will help you and someone else.
Take care,
Andi

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Wow Andi, thanks so much for all your suggestions! I'm definitely willing to give your "remedies" a try! Did you take the marshmallow root, leaf tea, baking soda and oil of oregano together every day? I knew before that I should avoid acidic foods. This is tough as I'm on sodium restriction, so I use lemon in cooking and especially to flavor water. Guess I'll have to eliminate that for awhile. Also, replaced coffee with green tea…. whoops. I'll try caffeine free herbal tea now. How long did it take to feel some relief or until your bladder healed? I'm sure you didn't continue to take the marshmallow root, etc after you started feeling better. Have you been able to add the acidic foods & caffeine back in your diet?
In answer to your questions. Yes, my PCP did a vaginal swab to rule out infection and there was no UTI. I was referred to Urology where they prescribed Estrace cream, which I continue to apply every night. This isn't helping much. Urology wants to do a cystoscopy, but I'm trying your suggestions first. I do have chronic kidney disease, thanks to insulin dependent Diabetes for 48 years….
I'll be busy ordering this stuff from Amazon tonight! I really do appreciate you taking the time to respond and sharing your treatments! I'm anxious to give it all a try and will keep in touch to let you know how things are going!
Thanks again,
Karen

Karen,
I found your letter very interesting because you mention that you’ve been drinking lemon water and green tea. I am 99% sure that those items caused my problem to begin with. I was drinking lemon water and green tea every day. They can both be bad for the lining of our bladders. I still drink the marshmallow root and leaf tea almost every night…just plain. I stay away from coffee and tea. Occasionally I’ll have a little chocolate (I avoided it while suffering because of the caffeine in it). Found that patting a little coconut oil around the entrance to the urethra a few times a day helped with burning. A little Replens on your finger patted around the sore entrance helps too, but don’t use the applicator or try to shove any up “there”. Hormone creams make me feel terrible, so I stay away from that. I started feeling better after a month or so. Just knowing I was working on it made me feel empowered. I would have gone to see a urologist, but I could tell I was feeling better, so I waited. After a couple months I knew the problem was healed. And if it comes back, I know what to do again and I would start my “treatment” at the first sign, so it wouldn’t get so bad.
Good luck and please keep me posted!
Andi

@andilynn

Kastro, I’m so sorry you have to deal with this – it is awful. I have had two flares of interstitial cystitis that cause terrible burning with urination, but no infection. Has any doctor checked you for that? Here’s what helped me. Sorry the list is so long!
1. At least two cups of marshmallow root and leaf tea (unsweetened) very day (I buy it online).
2. I bought size 0 empty vegetable capsules and filled them with 1/8 tsp. Baking soda and took them every night at bedtime with water for a couple weeks to help get the urine to be less acidic. This helped so much!
3. Oil of oregano gel caps – one every day. I got the Solaray ones online.
4. Lots of water all day long.
5. No sugar or flour.
6. No acidic foods. That includes anything even closely related to tomatoes, berries, pineapple, anything lemon. The only fruit I ate was apples. I think bananas are okay, I just don’t like them.
7. Absolutely no caffeine. That means no coffee or tea, even decaf. No green tea for sure. Herbal tea that’s caffeine free is ok.
8. A heating pad or hot water bottle felt good sometimes, other times it didn’t.
9. I didn’t eat much during this time because every food was suspect in my opinion. But, my bladder healed and I got well again.
No doctor helped me with this, I just read everything I could find and figured out what worked for me. I pray that this info will help you and someone else.
Take care,
Andi

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I took the tea two or three times a day, the oregano oil with breakfast and the baking soda with my nightly pills. I read that you can take that twice a day, but I only took it once. I guess it’s high in sodium, so it can’t be taken forever. I did it for about 8 days at first and then stopped for a few days. I still was uncomfortable, so I think I went back on it for another week. This was all last summer and my memory isn’t very good on that.

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