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Pelvic Pain And Discomfort And Peeing All The Time

pelvic pain non uti frequent urination

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46 replies to this topic

#16 icelandgirl

 
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Posted 23 July 2014 - 06:49 AM

Before my diagnosis it got to be a constant as in the whole summer.  Actually probably the whole school year too, but I was always near the bathroom then, so I didn't consider it too inconvenient.  I felt continuously thirsty too, so what comes in must go out.  I really believe part of it at the times was that I didn't absorb the water I drank.
 
 If  I have this symptom now it usually lasts only a few days.  It is often just before or during a period.  I have been discovered to have high estrogen levels.  The functional medicine nurse believes that the celiac made it difficult for my body to break down estrogen to remove it.  I am working on lowering those levels now.
 
I agree that food intolerances may irritate the bladder and cause this.  I am trying to figure out if there is such a thing as estrogen intolerance too.
 
Are you new to the diet, because I am hoping that this will improve for you in time and as you can pin-point some causes.
 
This is information on the diet I tried for this.  It seemed to help prediagnosis, but I think gluten was a huge factor that it missed!
 
Prediagnosis I use to worry also that my children would be motherless because of this my most visible symptom.  Other symptoms such as brain fog and fatigue were mysterious as they could not be measured.
 
I hope you find some answers that will help and that you will soon be an energetic mother and full of life.

Today its 6 months since my diagnosis...I feel myself tearing up writing that. The day I was given the diagnosis I was so relieved to have an answer and so hopeful that I would get better. I'm still struggling so much.
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

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#17 icelandgirl

 
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Posted 23 July 2014 - 02:24 PM

Just an update for anyone following...

I saw the nurse practitioner today. Did another pee test and it was negative. Did an exam and didn't see or feel anything she was concerned about. I'm scheduled for an ultrasound on the 8th. Kind of a wait but their office only does them Tuesdays and Fridays. The first available was the day I should start my period so couldn't do that.

She also mentioned that another NP in the office had twice had ovarian cysts large enough to cause this type of thing.

Allright...thanks for listening...I'm off to pee..
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#18 across

 
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Posted 23 July 2014 - 06:30 PM

Thanks across...did yours come on all of a sudden and then just not go away. Mine started out bad that's why I thought uti. 6 days later it's better by half but still. Do you mind me asking what dietary changes you made that help?

To be honest with you, I don't really remember how it began. I think for me it was more of a gradual thing, but there were definitely times that it was so strong that I was SURE that I had a bladder infection, and didn't. By the time I changed my diet, I had been living with it at a pretty severe level for a long time.

 

You can google IC diet to see what the recommendations are, but for me it was different than the usual IC culprits (although some things are the same). I don't do soda, caffeine, coffee (even decaf), tea (even decaf), artificial sweeteners (especially bad on the bladder), sugar, tomatoes, peppers, dairy, corn, and some nuts. I also avoid gluten, of course. I also don't eat potatoes most of the time. If I stay away from those things, my bladder feels normal. 

 

Recently, I drank a Coke and had a serious IC flare. It reminded me just how much pain I had been in.

 

With IC, you pretty much have to do an elimination diet to see what the triggers are for you. Everybody is different in that regard.

 

I really doubt you have IC, though, given the sudden onset. 


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#19 icelandgirl

 
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Posted 24 July 2014 - 11:12 AM

To be honest with you, I don't really remember how it began. I think for me it was more of a gradual thing, but there were definitely times that it was so strong that I was SURE that I had a bladder infection, and didn't. By the time I changed my diet, I had been living with it at a pretty severe level for a long time.
 
You can google IC diet to see what the recommendations are, but for me it was different than the usual IC culprits (although some things are the same). I don't do soda, caffeine, coffee (even decaf), tea (even decaf), artificial sweeteners (especially bad on the bladder), sugar, tomatoes, peppers, dairy, corn, and some nuts. I also avoid gluten, of course. I also don't eat potatoes most of the time. If I stay away from those things, my bladder feels normal. 
 
Recently, I drank a Coke and had a serious IC flare. It reminded me just how much pain I had been in.
 
With IC, you pretty much have to do an elimination diet to see what the triggers are for you. Everybody is different in that regard.
 
I really doubt you have IC, though, given the sudden onset.

Thanks across...sounds miserable. Mine is somewhat improved today. I had a 3 hour period between trips to the bathroom which was amazing! I just want to feel good...ya know?
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#20 beth01

 
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Posted 24 July 2014 - 02:00 PM

Hopefully you are on the road to recovery and won't have to deal with this again.  I myself am looking for the damn reset button on my body and can't find it.  If you find yours will you let me know where it is located at?


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Diagnosed April 7th 2014

#21 icelandgirl

 
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Posted 24 July 2014 - 02:18 PM

Hopefully you are on the road to recovery and won't have to deal with this again. I myself am looking for the damn reset button on my body and can't find it. If you find yours will you let me know where it is located at?

Lol! I will...If you promise to do the same? How are you doing? I just made it to 6 months...kind of thought I'd be better than this...ya know?
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#22 beth01

 
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Posted 24 July 2014 - 02:37 PM

If I find that damn button I will share it with the world lol!  The last two and half weeks have been very hard on me.  I have left the house only twice and barely made it home from the store last night without some rather embarrassing results.  I feel good today but I haven't eaten in two days.  I looked for some shakes to try and maybe supplement the lack of calories I have been getting but I can't find a soy and dairy free one unless I get pedialyte but that is just more for dehydration and I am having no problem with liquids.  At least the doctor I see tomorrow isn't going to give two shits if I have lost a ton of weight in the last two weeks so I am thinking I can forgo a hospital stay for TPN but only until my GP reads the notes.  It's amazing to me how close he follows me now that he knows he dropped the ball for the last 11 years.  I think he has my chart indexed or something and is notified when I am seen.  I get calls from his nurse at least once a week to see how I am doing.  I was supposed to go in and see them earlier this week if I haven't improved so they could do a CT to check for diverticulitis but my symptoms don't fit really unless I am one of the few that has right sided pain instead of left sided and I am leery(fed up) of doctors right now.  There isn't anything left on the right side but my liver and my LFT's are normal. It's a mystery to me.  The brain fog is about killing me too, about 50% of the reason I stay home all the time.  I sound like I am half brain dead or stroking out with how garbled and dyslexic my speech has become. If only my mouth wouldn't be so much quicker than my brain!


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Diagnosed April 7th 2014

#23 icelandgirl

 
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Posted 24 July 2014 - 06:07 PM

Oh man...that's rough.  I have been there though...I've had that embarrassing result...so disgusting.  Makes you feel less than human.

 

I have a rice protein powder that is dairy and soy free.  Got it at Whole Foods.  I add it to a smoothie.  It's not highly caloric, but it's something.  You could do something like that with a banana and maybe some berries and maybe some liquid you could deal with.  Are you doing dairy and soy free because you know you have issues with them or because you're trying to figure it out?  I ask because I cut both of those out 2 days ago.  I'm getting desperate to feel better and just gluten free isn't cutting it.  Didn't realize how much stuff had soy until now.  :(

 

I am so leery of doctors.  I've spent so much money on them this year...it's insane.  Our insurance has a high deductible and I ended up paying for my gallbladder and uterine polyp surgeries basically out of pocket.  Ugh.  And I don't feel like they are helping.  It's so frustrating.  Good luck at your appointment tomorrow...hope you get some answers.  (hugs)


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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#24 beth01

 
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Posted 24 July 2014 - 06:45 PM

I know how it goes with the insurance, I am still paying deductibles from years ago that I had to put on a credit card or be turned to collections for, I could never get one year paid before the next year started.  I love how they make you pay 10% and nothing less is good enough.  My ex-husband made me take all that debt when we divorced too "they aren't my medical bills", even though some of that is two kids. I must have been the only one present for the making of them :).

 

I am dairy and soy free because they both bother me.  Makes it fun when trying to put butter in anything :)  Butter doesn't bother me as much as the soy in the butter substitutes so that is good.  Just so it isn't a recipe that calls for a lot of butter.  I hope I get the dairy back eventually, it really is a pain with all these other intolerances.  I can't eat garlic, eggs and whole rice is a problem too.  I can have rice flour but not a bowl of rice. Same with the eggs, I can eat them incorporated into a recipe but can't just sit and eat an egg. Pretty much I am sticking to whole foods.  My family is just stuck eating what I make unless I get ambitious enough and freeze what I can eat into single serving.  Been a lot of chicken soup here going on.

 

I am really not expecting much at the doctors tomorrow. I would be amazed if I actually come home with answers.  There is no blood test for Fibro and with a lot of the symptoms overlapping I really don't think he will be quick to say it is Fibro. I hope they switch meds though because I am two months straight with an NSAID and I can tell when my 12 hours is going to be up about 2 hours before.  It can't be helping the belly much either.

 

One foot forward, one day at a time. Hugs right back!


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Diagnosed April 7th 2014

#25 BlessedMommy

 
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Posted 24 July 2014 - 06:49 PM

I am dairy and soy free because they both bother me.  Makes it fun when trying to put butter in anything :)  

Not all butter substitutes have soy. :)

 

Are you familiar with these brands?

 

http://earthbalancen...buttery-spread/

 

http://earthbalancen...coconut-butter/


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#26 beth01

 
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Posted 24 July 2014 - 06:56 PM

I have never seen that in the stores around here Ruth, I will have to do some more hunting.  There are three grocery stores in this area and a Food Co-op, I will probably have better luck with co-op.  Thank you.


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Diagnosed April 7th 2014

#27 icelandgirl

 
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Posted 24 July 2014 - 07:08 PM

Not all butter substitutes have soy. :)
 
Are you familiar with these brands?
 
http://earthbalancen...buttery-spread/
 
http://earthbalancen...coconut-butter/

I will be looking for those too. Really wanted something in my rice tonight. Thanks Ruth!
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#28 BlessedMommy

 
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Posted 24 July 2014 - 07:12 PM

No problem! I hope that you can find them.

 

I don't know where you live, but in our area it's really easy to find the soy free earth balance version. I think that even Wal-Mart carries it.


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#29 icelandgirl

 
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Posted 24 July 2014 - 07:13 PM

I know how it goes with the insurance, I am still paying deductibles from years ago that I had to put on a credit card or be turned to collections for, I could never get one year paid before the next year started.  I love how they make you pay 10% and nothing less is good enough.  My ex-husband made me take all that debt when we divorced too "they aren't my medical bills", even though some of that is two kids. I must have been the only one present for the making of them :).
 
I am dairy and soy free because they both bother me.  Makes it fun when trying to put butter in anything :)  Butter doesn't bother me as much as the soy in the butter substitutes so that is good.  Just so it isn't a recipe that calls for a lot of butter.  I hope I get the dairy back eventually, it really is a pain with all these other intolerances.  I can't eat garlic, eggs and whole rice is a problem too.  I can have rice flour but not a bowl of rice. Same with the eggs, I can eat them incorporated into a recipe but can't just sit and eat an egg. Pretty much I am sticking to whole foods.  My family is just stuck eating what I make unless I get ambitious enough and freeze what I can eat into single serving.  Been a lot of chicken soup here going on.
 
I am really not expecting much at the doctors tomorrow. I would be amazed if I actually come home with answers.  There is no blood test for Fibro and with a lot of the symptoms overlapping I really don't think he will be quick to say it is Fibro. I hope they switch meds though because I am two months straight with an NSAID and I can tell when my 12 hours is going to be up about 2 hours before.  It can't be helping the belly much either.
 
One foot forward, one day at a time. Hugs right back!

It's crazy how much it all costs too. Urgh. My son's best friend and family went to California on vacation this summer. He asked if we were going anywhere...ummm...nope...medical bills. Sad. Just have to keep hoping that we get better right?

I've decided it's best to go in to the doctor expecting nothing...that way you don't get let down. It can feel devastating. And hey...you may be pleasantly surprised!

Btw...I miss dairy...A lot. Hmm...not sure if it bothers me or not. Just felt I had to try something.
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January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#30 beth01

 
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Posted 24 July 2014 - 07:27 PM

Breyer's makes a good dairy free ice cream so I haven't had a problem with that, and I have been substituting almond milk in anything that calls for milk without a problem.  It's the cheese that gets me (anyone can chime in with a good cheese substitute :) ).

 

I am going to put my medical file under my pillow tonight and hope the diagnosis fairy visits me after I wake up with a sore neck from sleeping on a book... haha


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Diagnosed April 7th 2014




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