Re: Anyone with endo and urinary tract issues-just found out I have a stone.
From: anonymous@obgyn.net
Fri Jun 8 10:04:31 2007
For me a kidney stone is what started my adventure into the world of
endo and laparoscopic surgery, etc...
I had some pain in my urethra and I mentioned it to my MD, so she looked
around down there and didn't see anything. The next morning when I woke
up I felt like I had a piece of glass in my vagina, s in the shower I
felt around down there and found a stone. I saved it and had it sent in
for analysis and it was a calcium oxalate kidney stone. So...my doctor
ordered some blood tests (calcium, parathyroid, thyroid) and a CT scan
of my abdomen and pelvis, she also referred me to a urologist who
ordered two 24-hr urine tests. It was weird for me to have a kidney
stone since I am a woman and only 33 at the time. I have had flank pain
for the last 3-4 years, especially at night around the time of my period
(don't know if it is linked to endo). I guess I could have been passing
stones all along, I didn't feel much with the one I know I passed.
Anyway, the CT showed a cyst on my right ovary, a dermoid cyst (the
weird kind that have teeth and hair in them). So, a vaginal and
abdominal ultrasound was ordered and confirmed the cyst. I scheduled
surgery to have it taken out because they can torque and cause your tube
to twist on itself causing lots of pain and emergency surgery.
After surgery I found out that I have stage four endometriosis with an
obliterated cul-de-sac and extensive adhesions and they could not remove
the dermoid. My surgeon said that when he opened me up and saw how bad
it was in there he thought that he had the wrong patient because I never
complained of pain. Though I did tell him that I had very bad periods
where I take 800mg of Ibuprofen every 4 hours for the 1st couple of days
and that I vomit and have diarrhea and night sweats.
Anyhow, I have since had laparoscopic surgery to clean everything out
and get that nasty dermoid out of me and unstick all of my organs from
eachother.
Back to the stone...my follow up appointment with the "stone
specialist". My 2-24hr urine tests showed that I excrete double that
normal amount of calcium in my urine, too much phosphorus as well. He
recommended that I take HCTZ(a diuretic that helps to reabsorb the
calcium) I didn't really like that idea so I asked if I could do another
24 hr urine in a few months and see if it is still elevated. In the
meantime I met with my internist who also didn't like that idea (she is
a holistic MD) and recommended I take potassium and cherries and
continue to drink lots of water (2 liters a day -and did I mention I was
diagnosed with and overactive bladder?). I am also to cut down on
protein and sodium (that's from both docs). It is unknown wether the
calcium is not being reabsorbed in the kidney or if I absorb too much in
the gut so my MD did a vitamin D test to see if it was elevated (if it
was I think we could lean more toward the problem being in the gut).
Vitamin D was low, so now I am taking vit D and calcium supplements. I
did read an interesting article that links vitamin D deficiency with
increased colds and flu, especially in the winter. It was encouraging
to me because I get sick nearly every month from september to March,
maybe this year will be different...
The sickness and all that I read about immunity, allergies and endo
prompted me to got to an allergist. I have been tested for every
allergen under the sun and there is nothing that I am allergic to. I
MIGHT have asthma (hard to say) He did test my immune system and one of
the components of my immune system is low (my Iga). I still haven't
made an appointment to see him again about that, so I have yet to find
out what he thinks about it.
All of this started in November of 2006 and it ain't over yet, all these
new little pieces keep popping up and I wonder if they are all linked. I
tend to think since the body all works together that one thing affects
another wether directly or indirectly.
The doctor should check your parathyroid because if it is in hyperdrive
it causes you to increase your blood level of calcium, which increases
your urine calcium and leads to stones. You should also do the 24 hr
urine test to see what you are excreting. I hope you can get your stone
out as painlessly as I did.
Sorry my story was so long, I was feeling wordy this morning:)
Hope everything works out for you!
Laura
At Fri, 8 Jun 2007, anonymous wrote:
>
>Hi there!
>
>I don’t know if I have any of the answers that you are looking for but I
>thought I would give you my story. I have had terrible cramps since
>about the age of 14 (I’m 26) and everyone told me it was normal. When I
>was 16 I had intense right sided pain for one day and then it went a
>way. I was still feeling sick so I went to the doctor the next
>day…eventually he did an ultrasound and it appeared that my appendix was
>swollen so it was removed via lap. When I was 18 (almost 2 years to the
>day) I went to the hospital with extreme flank pain again and they
>wanted a urinalysis. When I peed in the cup it was entirely blood. I
>was admitted into the hospital with a blocked kidney and could not pass
>the stone. Eventuall,y I had to have it removed and my doctor said it
>was the size of a nickel. Everyone thought it was strange for me to
>have a kidney stone at such a young age, but no one followed up with me
>about what I should do. I was just told that I would keep getting them.
>About 2 years ago I started getting that same pain again around the time
>that I ovulate and through the first 3 days of my period. Some times it
>is very intense and some times it is just a dull stabbing pain. Finally,
>I couldn’t take it anymore and I went to the gynecologist (I never go to
>the doctor). Long story short, I had a lap which diagnosed me with mild
>endo and some of it is on my ureter (left side…and I have more right
>sided pain then left). I also had a 7 cm cyst on my left ovary and in a
>previous ultrasound had a 5 cm cyst on my right ovary. My doctor did
>not remove the endo on my ureter it and he was not interested in telling
>me what he did during the surgery; he just wanted to put me on depot
>shots. I said ok…and left. I then researched everything that I could
>and I also found Dr. Cook. Maybe my disease isn’t as bad a some, but
>the pain is real and to be honest I was surprised to hear that my case
>wasn’t that bad! I also don’t want to be treated by people who aren’t
>specialized in the disease…I figured if I am finally going to go to the
>doctor, I had better go to the right one so that I don’t have to go
>anymore! I also believe that my endo caused my kidney stone and possibly
>was on my appendix. I have asked Dr. Cook to look into this when I
>undergo my next surgery (I am not sure what he thought). I will let you
>know what Dr. Cook says. My suggestion is to try to find the
>assistance of a specialist. I hoped this helped and good luck. Just
>remember to listen to your body…
>
>At Thu, 7 Jun 2007, anonymous wrote:
>>
>>Hey girls just looking for some support. Thanks to this board I kept
>>asking more and more questions from my doctor and now I have answers.
>>Just a few months ago my doctor made the comment "I see people that are
>>sicker than you every day" (I was very suprised at this comment, because
>>my obgyn has always been very supportive and compassionate, but that
>>hurt). This is what happened. I have an 11+ year history with endo. In
>>the past year and a half I have had 10 UTI's. So I sat up the night
>>this comment was made to me, and I was upset-so I wrote my doctor a
>>letter-it was 3 pages. In it I brought up some possibilities (one of
>>them endo). We scheduled a laparoscopy and during the proceedure he
>>found that the endo had come back. It was on my left ovary and
>>ligament, on the back of my uterus, and there was scar tissue going from
>>the upper part of my abdominal wall to my peritoneum. (Okay now the
>>doctor told me at that same appt that he basically said I had no real
>>issues-that he didn't think there was any problem with my immune
>>system-also in a prior appt I asked if I should do a kidney function
>>test-he said we could but your kidneys are fine). So there is endo-an
>>immune disease. I go in for my post op appt this Tuesday and there I
>>tell him I am still having right flank pain-he showed me where he cut
>>out the scar tissue (and I tell him the pain is definitely in the back),
>>I think he would have just let me leave, or put me on an antibiotic to
>>take daily, but I asked (because of Dr.Daiters advise) if this could be
>>a kidney stone causing this excruciating pain (not to downplay endo
>>pain-because it is painful too, but combined with this pain I could take
>>2 percocets and 2 ibuprophen and I would still have to sleep on an ice
>>pack-just to dull the pain). So he looks at me and says we would have
>>caught that in the begining. I told him-we did an ultrasound of my
>>gallbladder and kidney about 2.5yrs ago, prior to the infections. So he
>>ordered a CT for this afternoon. After the CT they told me that I have
>>a 6mm Kidney stone that has already passed from my kidney and into my
>>ureterer-it is almost to my bladder. I used to have so much faith in my
>>doctor, but at this very moment I am actually kind of like-I hope he
>>feels bad for what he said to me-I am not a hypochondriac (sp)-I have
>>had endo growing inside of me-wearing down my immune system, and I have
>>had a kidney stone for this period of time. Has anyone had kidney
>>stones and how did you handle it? I am a little scared. A urologist is
>>supposed to be contacting me tonight with my orders and to tell me what
>>medications I will be taking. I am still recovering from my lap-anyone
>>know how this might me affected by this?
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