posted
she7, I have had the same EXACT symptoms as you. It's not just the sensitivity but the "difficulty
voiding". It's not brought on by medicines because its been that way for a long time, even
when I'm not on any meds. Never heard of that cyst. That will also be great info that I can
look into and then take to my dr. Thanks! You were quite helpful with your post!
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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bejoy
Frequent Contributor (1K+ posts)
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posted
I had that difficulty when I was about ten years old. (Had lyme probably since I was eight.)Sadly, mom didn't get it and told me that doesn't happen. Maybe I'm lucky because I got to avoid invasive procedures at that age.
In any case, I've had interstitial cystitis ever since.
Here's what has worked for me: 1. Avoiding coffee and very acidic substances. 2. Energy work on the piriformis muscles to reduce spasms. 3. Avoiding dairy products (don't have any idea why this helps.) 4. MOST HELPFUL: A homeopathic called Cantharis. When I take it in a tincture 3x a day, it reduces most of my bladder symptoms.
I just got a Sota magnetic pulser yesterday. They make no claims! But the instruments are based on the Beck protocol, which says that magnetic pulsing will kill bacteria and viruses in the tissues.
I used it about 40 minutes yesterday, and we'll see what happens. It seems to have gotten rid of a big fat cold sore on my lip overnight, and a nasty zit on my chin.
I zapped the bladder for quite a while. I'll see if it makes a difference, and I'll let ya'll know.
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
It took my urologist at least 6 months of frequent office visits to diagnose interstitial cystitis.
What has helped was instillation of the bladder to tone down the irritation. I had one done under anesthesia and they instilled a whole lot of some antiinflammatory med.
Later, when I had new "outbreaks" I went to urologist's office and had my bladder instilled with heparin for 3 weeks. Doc said he would send me home with heparin and I must learn to do it myself.
Don't know if that scared me into feeling better but I never had to do that myself.
A medication that has been a lifesaver for me is hydroxyzine. It is an antihistimine and works by soothing smooth muscle tissue.
I also stay away from acidic food and drink. Any stimulation of my bladder will cause an outbreak of symptoms. That would include sex, bouncing, etc.
Every time I have a urine test, no matter what it is for, blood is found in my urine. I just tell medical personnel that I have IC. The blood is from the irritation of the bladder lining.
My urologist told me that IC is a lifelong problem once it has started. My LLMD told me that about 60% of his female patients have some form of this problem.
He believes that tx for Lyme and coinfections will clear it up eventually, but there can be herxes involving the bladder as there is die-off.
As I understand it, the irritation of the bladder lining can cause it to spasm and it holds urine. With IC, one never really empties the bladder and that is a breeding ground for bacteria.
The bacteria isn't enough to show UTI's but it can cause feelings of fullness. I have also had to have my ureter stretched gradually until all the urine is emptied. It actually was a relieving feeling after my bladder emptied.
I was holding about 8 - 16 ounces of urine in my bladder most of the time. Good luck with your bladder problems! And you might mention hydroxyzine to your doctor the next time to see him.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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bejoy
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posted
Seems to me like there may be two extemes of a similar nature - spasms and hypotonicity.
I'm looking in to Dr. K's bee venom therapy. They do neural therapy injections in the acupuncture point realting to the bladder. My ND is trained in this.
I've tried most of the standard stuff over the past twenty years. So, if electomagnets don't work, I'm going for bees. Constant irritation in a recreational area calls for exteme measures!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
mine bladder problems are frequency and urgency, I have been diagosed with diabetes insipidus (its not like the regular diabetes) which is an endocrine problem that causes you to be extra thristy and urinate ALOT and very frequent, but the meds for that dont seem to be working.
Posts: 217 | From Everywhere | Registered: Nov 2006
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Foggy
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Yes, and Elmiron helped allot. Took a few months but improved.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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I had an ultrasound last Monday because I have something "irregular" going on around the female parts. The symptom that finally got me into the doctor's office was sharp pain near the bladder during the 'high estrogen' parts of my cycle.
Mild, but not exactly bladder infection symptoms come and go too. The urine culture came back "mixed organisms" which the doctor interpreted as a contaminated sample(!) So I get to do that test again ... more carefully. I do remember being pretty careful the first time...
So, when I come to the ultrasound I have a very full bladder, just as per the instructions. And after the first part of the exam, I am instructed to go empty the bladder and then they proceed. The ultrasound technician then says I still have a pretty full bladder. Honest, I tried to empty it!
Janet, your explanation of the irritation making it hard to empty the bladder makes sense. I am not sure what to do about it since I like to avoid doctors and drugs, but at least now I have some more clues to the problem.
For now, I think I'm sticking to the cranberry concentrate while I think about this.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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posted
RuthRuth, That happened to me also in a bladder
ultrasound test. I had what was supposed to be
outpatient, with a possible one night stay in the
hospital but due to complications, much involving
my bladder, was in for 12 days!
They could not get me to empty my bladder fully
after removing my catheter. They made me continue
more fluids, then took me down for an ultrasound.
When they were running that thing across my bladder I thought I was going to die!
Then the tech told me to go empty my bladder. I stayed in the bathroom for so long, she had to knock
on the door to ask if I was alright!
I could only get a trickle out so they sent me back up to my room and said the test could not
be completed.
Meanwhile, I'm laying there ready to explode! After, and I will say this mildly, a stern
request from my husband for them to do something
to get this urine out of me, they finally reinserted the catheter.
Since my dr left the day after surgery to get married , I had a different dr from the practice come in every day. One would say remove the catheter, the next would say, why would they remove the
catheter so soon knowing the problems you're having.
That catheter was reinserted three times. As you can imagine, it was a tad more painful each
time they did it. This was all pre Lyme diagnosis. My llmd said that my complications were all related to my Lyme.
So we Lymies can't hold it in or can't get it out!
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
Ouch reading this brought back some BAD memories.
After my 3rd pelvic ultra sound.....I now take either AZO standard (like pyridium, but over the counter) or my prescription urelle(bladder antispasmatic)
before I go for the ultra sound. I also only drink Evian water (a water i know is NOT iritating to my bladder) I also go to the testing site and start drinking there cause i cannot hold 32oz of water and drive.
After my Cysto/hydro my bladder bled and i had to be cathed overnite.. the dr on fellowship said it was because of the lyme.
I always have WBC in my urine usually around a 10...no bacteria has ever grown in culture.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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I was also told I had no bacteria in my urine. Bladder problems are one of my three main symptoms. It started at age 24 (i just turned 27).
Anyway the bladder problems are what led me to the Lyme diagnosis. I was treated by a nurse practitioner who specializes in IC (she was a former IC patient who cured herself with antibiotics). She recommended I send a sample off to United Medical lab for testing and sure enough they found group d strep. So I was treated for that with no improvement then I found out through another broth culture I had klebsiella and was treated with no improvement. She said usually her patients start feeling some relief but the ones who don't she has sent them for Lyme investigation and they have all turned out to have Lyme. She said based on my other symptoms she would strongly suggest I found out about Lyme and see a knowledgable doctor.
So for those who are told they have no bacteria that's not necessarily the case if you ask me. The standard urine culture only really looks for e.coli. IC is a wastebasket diagnosis if you ask me. Of course I believe the symptoms are real but I think they are missing the causes of the disease.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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I'm glad that something I shared might have helped you. I HATE going to docs too and avoid whenever possible, but IC and other bladder problems can be so awful that we usually want help yesterday.
I forgot to mention that at one of my last visits I knew I was holding urine just by the heaviness and the pain in the backs of my legs that I am used to with an IC outbreak.
The doc examined me and told me they would have to dilate my ureter to allow my bladder to empty. They wouldn't be able to instill Heparin unless I had an empty bladder.
My ureter was so spasmed that they could not fit the catheter in. So in comes this nurse with a tray filled with fairly long cylinders of graduating circumferences.
She inserted the smallest "rod" with a small amount of difficulty then removed it. Then she used the next largest size, inserted it, left it there about 5 minutes and removed it.
By size 5 I was getting VERY sore. I asked her how many more of these tortuous things were necessary to insert inside me and she said we would need to go to size 10 before they would be able to insert a catheter.
I started crying, the way I sometimes do when I am in a doc's office and feel powerless and like an object.....and am so very tired of it all. I told her I just had to see the doctor.
My doc came in right away and I asked him if there might be something else that could be done because I just couldn't tolerate the pain. He said "of course, honey." I wanted to smack him AND his nurse.
They were able to numb my ureter with some localized meds and then give me a shot that totally numbed that area. Then the nurse proceeded with her dilation procedure. At about number 8, urine started leaking slowly from my bladder.
When the doctor came back in to catherize me, I had almost 2/3 of a LITER of urine come out. My abdomen went down considerably in size right away.
Why am I going into all this detail? Because it might help you or someone else in not only knowing what kind of procedures are done or what to expect,
but also to realize that you DO NOT have to put up with horrendous pain just to get treatment. I think many of us try to play the martyr and we actually have developed quite a tolerance to pain.
I think a "normal" person would have rejected the dilation therapy after the first try.
I also wanted to tell you that my doc told me to NOT drink cranberry juice as well as orange or other citric juices. He said that while cranberry juice might help someone with normal ITI's, it is not good for IC.
I am hoping you will have success in getting your IC under control!
Blessings, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Thank you so much Janet. This is not a pretty topic at all! But how can we know if we don't get the story from someone who's been there.
I have not had things get as bad as some described in this thread. But bad enough to go for 'help' from the doctor. The good news for me is that I told my husband about the inflammation problem and he just put his hand on my tummy and told things to calm down and get better. And they did. Pretty cool.
I understand about avoiding the acidic stuff as a generally good idea, but for me at least it's been helpful. I also drink lots of herbal teas/tinctures/decoctions these days and so maybe it's all working together for me.
Again, thank you for being very specific about these delicate matters, I am helped by knowing!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES!!!
AT first when I first got sick I became INCONTINENT at the age of 29!!!! It was HUMILIATING!!! I was afraid to leave the house!! I could not FEEL it happening at all!!! AGH!!! It only happened a few times but it was enough to be HORRIBLE HORRIBLE HORRIBLE.
That went away with IV Rocephin.
I also got Interstital Cystitis!!! And that went away with heavy doses of cipro and Monurol!!!
When I first got it I took one week of cipro and it was gone for a month- then it came back- my doc would not do cipro again (don' t get why). I took a double dose of Monurol to get rid of it. That is an abx for the bladder. I did it AGAINSt medical advice but it worked.
My local doc has ordered me Monurol- it came in 3 packets. He told me to take ONE. I did. It stopped symptoms for about 1 day (but that was wonderful!!!). He said that meant it didn't work- but it DID SOMETHING!!! So I took the two remaining packets- supposed to be taken NOT at same time, and I took one and then the second the very next day- and my IC disappeared!!! THANK GOD.
IT SUCKED!!!
No fun stuff. Yikes.
Glad it is gone!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Beverly
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Hi all,
I have bladder probelms also. The last time I saw my Gyno he referred me to a urologist, but I haven't went yet.
I guess for me, I am just tired of seeing doctors. I have had bladder probems for a long time, so I am used to pain. I take the over the counter AZO stuff and it does help. I was on Bactrim for a while too and that helped somewhat.
This is an intresting thread and boy is it bringing back memories for me as well. I had pelvic infections over and over and never could hold the water for the ultra sound. Maybe I will go see the urologist after all.
Good luck all....and hugs Posts: 6641 | From Michigan | Registered: Jun 2001
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cantgiveupyet
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Member # 8165
posted
The question I have is ...is the damage to our bladders permanant? Is it nerve damage or inflamation?
Im on neurontin and it helps a lil bit, but not completely.
I cant take abx right now (working on building up my body with supliments) i get horrible yeast infections from the abx.
Urologists are good for treating symptoms and giving you some relief with those...but there is no cure for IC in the urology world.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Sorry to hear about your bladder issues. They are no fun.
I had five instances of what seemed to be infections in one year when I was starting to have tingling in my extremities, heart issues, and severe migraines that were preseizure kind of migraines.
To make a very long story short when I finally went through extensive, aggressive antibiotic treatment my bladder issues have seemed to clear up.
When I would have a herxheimer reaction and in the first six months of treatment I actually would see a tissue like substance in my urine. It was crazy stuff. By the time my herxheimer reactions became less and less severe there was no longer that tissue like substance.
I hope you are able to find relief soon and feel better.
Take care...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Thought of another story that might help someone:
About 14 years ago, long before my Lyme diagnosis and before I became too ill to work, I was having occasional UTI's and had to go to my primary care doc every time for relief.
There were no over-the-counter meds then. The pain was unusually strong this time and I begged for an appointment from the gatekeeper of my doc's practice.
The nurse did the regular thing...."here's a cup, take it to the bathroom and give me some urine..." I knew the drill and left the cup on the ledge of a small window which the nurse would open and take my little cup of urine to be tested.
My doc came in and said that unlike all my other visits for UTI's, my urine sample was fine. He must have seen the pain on my face and suggested that he do a pelvic exam.
That little exam is my least favorite of all. He began examining me and when he moved my insides around a bit I almost hit the ceiling.
His face turned whitish/grey. He told me he felt a mass on each of my ovaries. I asked what kind of mass.....he said he was sending me to have an ultrasound right away.
After his manipulation, my pain escalated to a level I hadn't felt since childbirth and I begged for a pain reliever. Doc ordered IM morphine!
Went for ultrasound...more pain. I asked the tech what the test showed. She wouldn't say. She sent me back to my doc with films.
Doc came in exam room and still looked quite ill. He said the test showed a grapefruit-sized tumor on my left ovary and an apple-sized one on the right ovary.
He scheduled an appt. for me with an obstetric surgeon five days away. I told him I couldn't wait for five days....he gave me more drugs.
I called a friend who is married to a urologist and works in his office as his RN. I asked if her husband would look at my tests and she told me to come in right away.
The urologist took my films to a radiologist for his opinion. He came back and told me that it appeared I had tumors on both ovaries, not fluid-filled masses like cysts. He said it didnt' look good.
He called the OB surgeon and arranged a same day appt. with him at 6:00 pm on a Friday. The surgeon was great and scheduled surgery for me the next Wed. when he did all his surgeries.
I was terrified. People at work came to see me and started a large prayer chain. On Sunday, a group of 10 therapists came and surrounded my bed, held hands and prayed.
Then they all put their hands on me and asked for my healing. I have to admit that at that time I didn't believe in any of that "stuff" but welcomed their caring and attention.
Well wishing friends called me with stories about women who had ovarian tumors (cancer) and lovingly suggested that I start thinking about how I would live the next 3 or 4 months.
I had the surgery. My primary care doc came to see me afterwards when I had recovered from the anesthesia. He told me that my tumors were BENIGN!
He said that he had only seen that result one other time in all his years of practicing medicine. He also said that he had to go into the next hospital room and inform a young woman that her tumors were malignant and the cancer had spread.
Nowadays, I just hate to go to doctors. I refuse to go unless I am having a serious problem. But if I hadn't gone to my doctor that one time right away, I might have had serious complications.
Ovarian cancer is usually painless and there are rarely any symptoms until tumors have grown into very large masses. So I encourage EVERYONE who is experiencing bladder pain to see a doctor even if you are really reluctant to go because you are sure he/she will not find any problem or because you think you can treat it with over-the-counter meds.
There is now a blood test that in my opinion ought to be mandatory for women who have their ovaries (just like men have for their testicles.) I believe the test is called CA-125 or CA-25.
Experts here probably know of the test. It can save lives by finding cancer cells long before they have grown and spread. So many of us have multiple problems with many organs and we feel that everything is caused by Lyme. Sometimes, however, something else is wrong and we shouldn't be afraid to see a doctor about new symptoms.
Sorry for the LONG story. Just hoping this might save someone somehow.
Love to all, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Beverly
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posted
Thank you for sharing your story Janet, I am so glad the tumors were not cancerous.
Boy, the pain we all suffer...
Posts: 6641 | From Michigan | Registered: Jun 2001
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After the 'contaminated' result from the last urine sample, I finally had a new test order from my doctor. So, I take it to the lab, give them the sample and head home. I get an email a few hours later that the tests are complete and all normal. Hmmmm. Don't cultures take a while to grow???
I think I just got tired of trying to get the right test done and gave up.
That was two weeks ago. But now I am getting symptoms again and I'm just curious. What will get me the help I need? And what help do I need? What can I tell them that they will understand and treat me for anyway?
What would you do... if it were you?
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Ruth,
I would check to make sure a urinalysis was run with a culture. (i forget the correct terminology) It appears that maybe they only did the test where they dip a test strip in the urine and see if their are nitrates or wbc etc.
As far as I know labs will allow two days for bacteria to grow in culture.
Is there anyway you can go to your dr and request that you have a culture ran? since you still have symptoms.
I know it is frustrating, not to mention there is debate on just how accurate the cultures even are and Lyme will never grow in the lab in two days and other bactria dont grow in 2 days either.
When my bladdr symptoms first started I also had what they called a contaminated sample, my bladder hasnt been the same since.
Are you treating lyme could your llmd give you cipro, levaquin or bactrim to see if those help any.
For symptom relief Azo standard over the counter works, doesnt cure infection but helps you cope. as always check with your dr first.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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My HMO doesn't recognize lyme. I have an "initial" appointment with a LLMD April 19th. (We did a phone appointment last year.)
If I need treatment, the fact is I will have to pay for everything out of pocket if we can't sell my HMO doctor on my situation. My HMO doctor will have to have some kind of diagnosis that the HMO will accept before he can justify pricey meds/etc.
And all of this is on top of my preference for natural remedies.
I think I've learned a lot during the 'foot dragging' stage here, but until the appointment in a month, I do need to figure out something.
My kind and gentle husband very kindly and gently asked me to go back and get the right test run.
I will keep the Azo suggestion handy as well.
Peace to you and your house.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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It was a non-scientific approach. I threw everything I could come up with at it at the same time. Something stuck. My symptoms are indiscernible at this point. I am very, very grateful.
If I ran out of money and only got to pick one supplement for UTI protection, I think it would be the D-Mannose.
It is possible that the hormone support supplement is why I got my cycles back after three months without a period. But my LLMD says that many of her patients get it back after a course of Mepron. So it could be that my herbal treatments for Babesia are why the hormones are clicking a little better.
Like I said, not a scientific approach, just trying to get some relief!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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posted
When all of my Lyme symptoms first appeared so did the urinary tract infection like feelings. I have frequency to go to the bathroom that even wake's me up at night. I also have difficulty starting urination and painful urination now too. It's deffinitly lyme disease...
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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Yep. I have to counsel myself to not get spun up when well meaning people say... "well you are getting older" ... as if after a pretty healthy journey through life the calendar would turn and BAM, everything falls apart or something.
I am too curious about cause and effect to be willing to simply accept a loss of good health as "aging."
I wish more doctors were more curious about root causes as well.
Have you found any way to get symptom relief for yourself LuLu?
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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