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Pelvic Pain And Discomfort And Peeing All The Time

pelvic pain non uti frequent urination

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#1 icelandgirl

 
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Posted 22 July 2014 - 11:45 AM

I'm not sure that this is a related disorder so I may be posting in the wrong place.

I'm hoping someone can help with this.

A week ago I was sure I was getting a uti. Pelvic pain and pressure...having to pee constantly. On Thursday I went to see the doctor who did a culture and started me on antibiotics. On Monday she called to say that there was no infection. ..which didn't surprise me because I wasn't getting better.

I'm going in for an exam and ultrasound tomorrow. I'm still experiencing this. I'm waking at least twice a night to pee. Yesterday I was able to go 2 hours without having to go during the day and I was so excited...thought maybe it was getting better. But no.

Anyone else have this? Anyone know what it is? What should I ask the doctor tomorrow?

I'm planning on taking my kids to the aquarium on Friday and it will not be enjoyable if I have to run to the bathroom all the time.

I would love some input on this.
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#2 beth01

 
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Posted 22 July 2014 - 12:39 PM

You almost have to over hydrate. I noticed when this happened to me that if I even got close to being dehydrated the pain intensified.  I have also been taking Ultimate Flora Women's Daily probiotic twice a day which has helped with the pelvic pain.  I take Hydroxyzine 10 mg and a Benydryl at night.  A month ago I was miserable having the same problems, I also had a lot of vaginal itching that couldn't be linked to BV or yeast.  Sex was impossible between all the pain and itching.  With all that I am taking, all my symptoms have gotten a lot better and I would bet my BF would say it has gotten better ;).

 

When I went to see a Urologist, they did a bladder scan and wash which was rather unpleasant.  They flush a liter of saline into your bladder and then biopsy some of the wash.  They didn't find anything wrong and gave me a hormone cream and sent me on my way.  My ultrasounds didn't show anything either.

 

When I was at the doctor a few weeks ago and he said that he thinks I might have Fibromyalgia, which the bladder problems can be a symptom of.  I am seeing the Rheumatologist on Friday. 

 

I hope you figure it out.  This has been happening to me on and off now for two years and it gets rather old. I am happy with how things have improved for me though.


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#3 across

 
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Posted 22 July 2014 - 12:52 PM

It sounds like this just started for you, so it's unlikely to be interstitial cystitis unless it doesn't go away. I have IC...it's kind of like a permanent bladder infection, but with no infection. I've had it for six years, but mine is responsive to dietary changes, so I don't get symptoms anymore unless I eat something I shouldn't.

 

I wouldn't worry about it, but if it doesn't get better, ask your doctor about interstitial cystitis.


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#4 icelandgirl

 
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Posted 22 July 2014 - 01:30 PM

You almost have to over hydrate. I noticed when this happened to me that if I even got close to being dehydrated the pain intensified.  I have also been taking Ultimate Flora Women's Daily probiotic twice a day which has helped with the pelvic pain.  I take Hydroxyzine 10 mg and a Benydryl at night.  A month ago I was miserable having the same problems, I also had a lot of vaginal itching that couldn't be linked to BV or yeast.  Sex was impossible between all the pain and itching.  With all that I am taking, all my symptoms have gotten a lot better and I would bet my BF would say it has gotten better ;).
 
When I went to see a Urologist, they did a bladder scan and wash which was rather unpleasant.  They flush a liter of saline into your bladder and then biopsy some of the wash.  They didn't find anything wrong and gave me a hormone cream and sent me on my way.  My ultrasounds didn't show anything either.
 
When I was at the doctor a few weeks ago and he said that he thinks I might have Fibromyalgia, which the bladder problems can be a symptom of.  I am seeing the Rheumatologist on Friday. 
 
I hope you figure it out.  This has been happening to me on and off now for two years and it gets rather old. I am happy with how things have improved for me though.

Hey Beth...it is miserable. It's making me crazy really. Are your medications antihistamines? Do you think it's an allergy thing? The reason I'm asking is that I've been researching cause its really bugging me and read about pelvic stuff as a symptom of food allergies. I'm on allegra already and am doing allergy shots for severe environmental allergies.

Let us know how things go with the rheumy...you've been through so much.
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#5 icelandgirl

 
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Posted 22 July 2014 - 01:32 PM

It sounds like this just started for you, so it's unlikely to be interstitial cystitis unless it doesn't go away. I have IC...it's kind of like a permanent bladder infection, but with no infection. I've had it for six years, but mine is responsive to dietary changes, so I don't get symptoms anymore unless I eat something I shouldn't.
 
I wouldn't worry about it, but if it doesn't get better, ask your doctor about interstitial cystitis.

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?
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#6 beth01

 
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Posted 22 July 2014 - 02:26 PM

I think it is allergy related.  I have always had problems like this and I have always had symptoms of celiac.  Two years ago is when things really started to go down hill and all my symptoms intensified. Since my diagnosis things are slowly getting better and a few symptoms have gone away completely ( so far), 3 and a half months and not a single migraine.  That is a record for me in 30 years.  Most of my urinary/womanly problems have gotten immensely better.  They flare up after glutenings but then I double up on my probiotics and start the OTC UTI pain pills and after a few days I back off and see how I feel. I have tried a lot over the last few years and what I am doing now seems to be helping so I am going to stick with it.  I talked with my doctor about it and he feels the same since what we were doing  previously wasn't working.  The hydroxyzine is an antihistamine.  I was taking Zyrtec daily and getting the allergy shots previously due to multiple environmental allergies but when I got to the highest dose of the allergy shots I went into anaphylactic shock, wasn't a fun experience so I quit the allergy shots.  Amazingly after that ( I was super sensitive for a few weeks after my little rendezvous with the paddles and epi) once I could finally go outside again and not have an allergic reaction my allergies actually tamed down.  I had a 4+ reaction to almost everything and I can spend a day outside without a Kleenex.

 

The more and more I think about it though, our bodies hate us.  It just keeps attacking itself over and over.   Some people have thyroid issues, some diabetes, some allergies, fibro and so on and what they all boil down to is auto-immune.  I hardly ever get colds or the stomach bug but throw an AI at me and all it has to do is look at me funny and I have it.  And it's stressing to know that each one that you tack on ups your chances of getting another.  I don't think I ever have to worry about retirement, I think my body will give out way before that.  Sorry if that sounds morbid, I think of it as realistic.  That way if I live a long time I will be greatly surprised instead of devastated when I find out I am going to die at an earlier age. Or it might be the melancholy of feeling like shit for two weeks now.  Who knows.  I really wonder how many things I have thought I was allergic to over the years has just been a combination of everything?  I am getting off track, sorry.

 

We have all been through a lot, at least now we have each other to go through it with.


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#7 1desperateladysaved

 
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Posted 22 July 2014 - 02:46 PM

I have like problems off and on.  Not so much as I use to.  You might check into uterine fibroid or cyst.  I have had a hormonal balance that causes those.  They can exert pressure on the bladder.  My recent fibroid and cyst could not be felt by pelvic exam. 

 

My bladder is less irritated when I follow a diet for irritated bladder.  This eliminates tomato chocolate,  pineapple, and others.  You might check into that diet and see if it helps.  The doctors check me from diabetes and infection, but that isn't the problem. They wanted to put a tube up there to see if it is irritated.  "Yep, I said, its irritated, so no need."  I believe they do have some medication, but I don't know how it works.  I also prefer to use a diet before using a drug.  That is me!

 

Dee


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#8 icelandgirl

 
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Posted 22 July 2014 - 03:54 PM

I have like problems off and on.  Not so much as I use to.  You might check into uterine fibroid or cyst.  I have had a hormonal balance that causes those.  They can exert pressure on the bladder.  My recent fibroid and cyst could not be felt by pelvic exam. 

 

My bladder is less irritated when I follow a diet for irritated bladder.  This eliminates tomato chocolate,  pineapple, and others.  You might check into that diet and see if it helps.  The doctors check me from diabetes and infection, but that isn't the problem. They wanted to put a tube up there to see if it is irritated.  "Yep, I said, its irritated, so no need."  I believe they do have some medication, but I don't know how it works.  I also prefer to use a diet before using a drug.  That is me!

 

Dee

Hi Dee,

 

When you get these problems how long do they last?  I'm going in tomorrow for an exam with my gyno(fun) and likely an ultrasound to look for possible cysts or fibroids.  

 

You made me laugh telling them yep, it's irritated.  Ha!  Yeah, mine's irritated too.  I'm tired of waking up at night to pee and peeing all day.  I will look into the diet.

 

Thanks for responding...helps to know that others have experienced this too.


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"You never know how strong you are, until being strong is your only choice."
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#9 icelandgirl

 
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Posted 22 July 2014 - 04:06 PM

I think it is allergy related.  I have always had problems like this and I have always had symptoms of celiac.  Two years ago is when things really started to go down hill and all my symptoms intensified. Since my diagnosis things are slowly getting better and a few symptoms have gone away completely ( so far), 3 and a half months and not a single migraine.  That is a record for me in 30 years.  Most of my urinary/womanly problems have gotten immensely better.  They flare up after glutenings but then I double up on my probiotics and start the OTC UTI pain pills and after a few days I back off and see how I feel. I have tried a lot over the last few years and what I am doing now seems to be helping so I am going to stick with it.  I talked with my doctor about it and he feels the same since what we were doing  previously wasn't working.  The hydroxyzine is an antihistamine.  I was taking Zyrtec daily and getting the allergy shots previously due to multiple environmental allergies but when I got to the highest dose of the allergy shots I went into anaphylactic shock, wasn't a fun experience so I quit the allergy shots.  Amazingly after that ( I was super sensitive for a few weeks after my little rendezvous with the paddles and epi) once I could finally go outside again and not have an allergic reaction my allergies actually tamed down.  I had a 4+ reaction to almost everything and I can spend a day outside without a Kleenex.

 

The more and more I think about it though, our bodies hate us.  It just keeps attacking itself over and over.   Some people have thyroid issues, some diabetes, some allergies, fibro and so on and what they all boil down to is auto-immune.  I hardly ever get colds or the stomach bug but throw an AI at me and all it has to do is look at me funny and I have it.  And it's stressing to know that each one that you tack on ups your chances of getting another.  I don't think I ever have to worry about retirement, I think my body will give out way before that.  Sorry if that sounds morbid, I think of it as realistic.  That way if I live a long time I will be greatly surprised instead of devastated when I find out I am going to die at an earlier age. Or it might be the melancholy of feeling like shit for two weeks now.  Who knows.  I really wonder how many things I have thought I was allergic to over the years has just been a combination of everything?  I am getting off track, sorry.

 

We have all been through a lot, at least now we have each other to go through it with.

Whoa on the allergy shots!!  Really??  I was telling my husband this and he's like whoa, does your Dr know what he's doing?  What the heck.  I started allergy shots in January...could they be doing this?  Just thoughts.

 

I feel like my body hates me too.  :(  :(  :(  :( I've had the same thoughts as you.  My greatest fear is that I won't be around to raise my kids who I love more than the world.  I can imagine them being grown and someone asking what their mom was like and them saying, "well, she was always sick.  Then she got diagnosed with celiac and went gluten free and we thought she'd get better.  But she didn't."  I appreciate you sharing honestly...I've thought these things.  I try to stay positive, but feeling crappy makes it hard.  Isn't it enough to have an AI disease?  Apparently not.  I see on this board people with multiple AI diseases, with multiple surgeries, who given up gluten and everything else and still feel bad.  Who never go out to eat, yet still feel terrible.  I'm so frustrated!!

 

Thanks for being there.   :)


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"You never know how strong you are, until being strong is your only choice."
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#10 beth01

 
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Posted 22 July 2014 - 06:11 PM

I did fine with them up until the last couple of vials after the last level of upping the dosage over the course of six months.  They took me up slowly since I seem to be allergic to everything and thought I was doing really well.  I sat my thirty minutes in the waiting room and then had my husband drive me the hour home.  I got home and went to bed since I worked the night shift and woke up about an hour later hotter than crap.  I went back to sleep and woke up about a half hour later just roasting, sweat pouring off me.  I looked in the mirror and noticed I was the color of a lobster, head to toe fire engine red.  We lived about six blocks away from a small town hospital so my husband drove me there, we made it in about three minutes.  By the time I got to the ER I couldn't breath very well and the assholes had me fill out paper work.  I passed out in the reception area.  I remember the first two doses of EPI and IV Benadryl but after that is a mystery.  I guess they shocked me once and were getting ready to intubate me when I came around. They monitored me for a few hours and then sent me home( why they sent me home is a mystery).  By the time I got from the ER back to my house it started all over again.  This time they were ready damn near the minute I walked through the door.  I had to wear an N95 mask home and was house bound for about two weeks.  It sucked, but almost all of my environmental allergies got a lot more manageable.  I even have cats now which when my allergies all started after my first kid was born I had to get rid of my cats.  My allergist told me that I could start the allergy shots if I wanted to they would just build me up over the course of a couple of years.  I said no thanks.  Idiot.  He is also one of the ones that never tested me for food allergies. 

 

My boyfriend told me to look at healing in this perspective - we just got out of very abusive relationships with food.  It was a 37 year relationship for me.  How long would I expect it to take to heal from a physically abusive 37 year relationship?  I think we are just expecting things to happen over night and then are disappointed when we incur set back after setback.  We are in that phase "it get's worse before it get's better". Most of us that got diagnosed around the same time have pretty much varied symptoms but we all share them with someone else so at least we can share stories and try and help each other through.  We also have all the fine veterans on here to help us through. I also look at as I only have one more organ that I don't need ( besides my reproductive ones) for them to take so hopefully I won't need too many more surgeries lol. 15 in 20 years is about 15 too many.  I am super frustrated right now too and feel like something has to turn the corner soon, I don't know how much more I can take. I haven't worked in 7 months and money is tight and I have doctors dragging their feet in backing me on Disability until they figure out just what is going on and if I have Fibro or not. My kids are super bummed their mom is sick right now too. They are here every day and all I can do is lay around, I have no energy at all and hurt everywhere.  I just have to go to bed every night thinking tomorrow is the day it get's better and hope that one day tomorrow is.  Aren't we just Debbie Downers?


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#11 icelandgirl

 
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Posted 22 July 2014 - 07:01 PM

I did fine with them up until the last couple of vials after the last level of upping the dosage over the course of six months.  They took me up slowly since I seem to be allergic to everything and thought I was doing really well.  I sat my thirty minutes in the waiting room and then had my husband drive me the hour home.  I got home and went to bed since I worked the night shift and woke up about an hour later hotter than crap.  I went back to sleep and woke up about a half hour later just roasting, sweat pouring off me.  I looked in the mirror and noticed I was the color of a lobster, head to toe fire engine red.  We lived about six blocks away from a small town hospital so my husband drove me there, we made it in about three minutes.  By the time I got to the ER I couldn't breath very well and the assholes had me fill out paper work.  I passed out in the reception area.  I remember the first two doses of EPI and IV Benadryl but after that is a mystery.  I guess they shocked me once and were getting ready to intubate me when I came around. They monitored me for a few hours and then sent me home( why they sent me home is a mystery).  By the time I got from the ER back to my house it started all over again.  This time they were ready damn near the minute I walked through the door.  I had to wear an N95 mask home and was house bound for about two weeks.  It sucked, but almost all of my environmental allergies got a lot more manageable.  I even have cats now which when my allergies all started after my first kid was born I had to get rid of my cats.  My allergist told me that I could start the allergy shots if I wanted to they would just build me up over the course of a couple of years.  I said no thanks.  Idiot.  He is also one of the ones that never tested me for food allergies. 
 
My boyfriend told me to look at healing in this perspective - we just got out of very abusive relationships with food.  It was a 37 year relationship for me.  How long would I expect it to take to heal from a physically abusive 37 year relationship?  I think we are just expecting things to happen over night and then are disappointed when we incur set back after setback.  We are in that phase "it get's worse before it get's better". Most of us that got diagnosed around the same time have pretty much varied symptoms but we all share them with someone else so at least we can share stories and try and help each other through.  We also have all the fine veterans on here to help us through. I also look at as I only have one more organ that I don't need ( besides my reproductive ones) for them to take so hopefully I won't need too many more surgeries lol. 15 in 20 years is about 15 too many.  I am super frustrated right now too and feel like something has to turn the corner soon, I don't know how much more I can take. I haven't worked in 7 months and money is tight and I have doctors dragging their feet in backing me on Disability until they figure out just what is going on and if I have Fibro or not. My kids are super bummed their mom is sick right now too. They are here every day and all I can do is lay around, I have no energy at all and hurt everywhere.  I just have to go to bed every night thinking tomorrow is the day it get's better and hope that one day tomorrow is.  Aren't we just Debbie Downers?

Beth, that's so very scary. I guess I am a bit of a downer now...but man this is hard. Tomorrow is 6 months since my diagnosis. I thought things would be overall better by now. Sigh...All we can do is keep trying though.
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#12 kareng

 
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Posted 22 July 2014 - 07:07 PM

Beth, that's so very scary. I guess I am a bit of a downer now...but man this is hard. Tomorrow is 6 months since my diagnosis. I thought things would be overall better by now. Sigh...All we can do is keep trying though.


Don't get too worried. You don't have all the data yet. I don't know your age, but it could be some female issues that aren't fatal and are fixable. See what you see tomorrow. It's possible to have 2 problems -Celiac and something else. Often the " something else" is fixable.
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#13 icelandgirl

 
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Posted 22 July 2014 - 07:11 PM

Don't get too worried. You don't have all the data yet. I don't know your age, but it could be some female issues that aren't fatal and are fixable. See what you see tomorrow. It's possible to have 2 problems -Celiac and something else. Often the " something else" is fixable.

I hear you kareng. I just feel discouraged...I do. I'm 42.
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#14 kareng

 
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Posted 22 July 2014 - 07:15 PM

I hear you kareng. I just feel discouraged...I do. I'm 42.


Let us know what they see or don't see. There are some things at your age they may find that aren't a big deal.
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#15 1desperateladysaved

 
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Posted 23 July 2014 - 04:22 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.


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