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1 Month + 5 Urologists = No Answers PLZ help!
My girlfriend is now 10.5 weeks pregnant. At 6 weeks she started getting left flank pain that is in the lower quadrant starting from the back to the front with occasional shooting pains that go into her vagina. This has been a constant pain for nearly a month now. This has been extreme pain for her, 9 or 10 out of a pain scale of 10 (10 being the highest). During peak times (when the nurse takes her time bringing pain meds) the pain brings her to tears and is very unbearable to watch. The only relief she has had is after she gets IV delodid. There is no position that is comfortable for her and the pain seams to increase when she is pushed on, coughs, sneezes, vomits, and right after she urinates. She has been very nauseated since week 5 of the pregnancy and vomits on a daily basis (we believe this is just due to 1st trimester pregnancy). She has a hard time keeping food down which has caused her to lose alot of weight. She has had very irregular bowel movement which we believe is just because of the low amount of food consumption.
She has had numerous ultra sounds which reveal nothing except that the fetus is in the correct position. From an OB standpoint our baby is just fine, her hormone levels are perfect and every other OB tests seam normal.
Heres the kicker... She does have a history of Kidney stones but she only has gotten them once and guess what.... she was pregnant at that time too. She went into the hospital with the same symptoms I outlined above but, like this time, nothing showed up on any tests. Unfortunately her kidney suddenly began to swell up to a point the doctors thought it was going to rupture and they had to do emergency termination the baby to operate on the kidney, It was then when they found a kidney stone the size of a pencil eraser. The stone was analyzed to be a calcium stone (what ever they call it). 2 days later she was discharged and was doing great.
Now here we are 2.5 years later.
Given her past history the DR's decided to put in a stint between the kidney and ureter on the left side in hopes to relieve the pain. They went in by systosscopy (how ever you spell it) and didn't see anything abnormal but still placed the stint. It's been 8 days now and still no change in hew symptoms.
So... Even with past medical records and history we have gone through 5 Urologists, 2 OB's (1 specialty high risk OB), and 100's of residents that all keep telling her they can't see/find anything wrong with her. Then how can we explain the pain she is having?
We are limited to the amount of testing that can be done because of her pregnancy.She is allergic to IVP Dye (she swells up) so we can't do a CT scan. However when they did the systoscopy surgery they did what they call a retograde? and checked her left kidney and they said everything looked normal.
She has no other past medical history other than the very 1st time she had the stone which was 2.5 years ago. Both sides of her family has a history of breast cancer but from the grandmothers (one died at 33 because of it), her mother is in her 50's and has no signs and is very healthy.
We are dying for answers.... Over the past month she has slept in our bed a total of 3 nights. We are very fearful of the baby because she is still in her 1st trimester and has not been able to eat but a very small amount of food and has been on delodid for a month now. We are very desperate for answers or any suggestions that we can bring up to the doctors.
Thanks,
Doug
She has had numerous ultra sounds which reveal nothing except that the fetus is in the correct position. From an OB standpoint our baby is just fine, her hormone levels are perfect and every other OB tests seam normal.
Heres the kicker... She does have a history of Kidney stones but she only has gotten them once and guess what.... she was pregnant at that time too. She went into the hospital with the same symptoms I outlined above but, like this time, nothing showed up on any tests. Unfortunately her kidney suddenly began to swell up to a point the doctors thought it was going to rupture and they had to do emergency termination the baby to operate on the kidney, It was then when they found a kidney stone the size of a pencil eraser. The stone was analyzed to be a calcium stone (what ever they call it). 2 days later she was discharged and was doing great.
Now here we are 2.5 years later.
Given her past history the DR's decided to put in a stint between the kidney and ureter on the left side in hopes to relieve the pain. They went in by systosscopy (how ever you spell it) and didn't see anything abnormal but still placed the stint. It's been 8 days now and still no change in hew symptoms.
So... Even with past medical records and history we have gone through 5 Urologists, 2 OB's (1 specialty high risk OB), and 100's of residents that all keep telling her they can't see/find anything wrong with her. Then how can we explain the pain she is having?
We are limited to the amount of testing that can be done because of her pregnancy.She is allergic to IVP Dye (she swells up) so we can't do a CT scan. However when they did the systoscopy surgery they did what they call a retograde? and checked her left kidney and they said everything looked normal.
She has no other past medical history other than the very 1st time she had the stone which was 2.5 years ago. Both sides of her family has a history of breast cancer but from the grandmothers (one died at 33 because of it), her mother is in her 50's and has no signs and is very healthy.
We are dying for answers.... Over the past month she has slept in our bed a total of 3 nights. We are very fearful of the baby because she is still in her 1st trimester and has not been able to eat but a very small amount of food and has been on delodid for a month now. We are very desperate for answers or any suggestions that we can bring up to the doctors.
Thanks,
Doug
I looked through her medical records (the ones they gave us when we requested them) and they seam to be normal (according to the OB). Thats the one that level that is supposed to double every 48 hours right? They tested for it every day and the numbers kept getting higher. The last we heard from the OB (1 week ago when he told us to find another OB because he was no longer going to treat her because she is "high risk") was that from an OB stand point everything looks fine, the levels are where they are supposed to be and the baby is in the right position/place.
Although she has been on the Dilaudid for over a month now (wow, just realized it has been over a month), I don't think she is dependent on the drug. From my understanding being dependent/addicted would make you feel like you need it or you want it, or have to have it. In her case I don;'t think so. Her pain levels get to a 10/10 and she curls up in the fetal position crying like crazy in pain. I don't think thats an addition, she is in extreme pain and the dilaudid helps relieve her pain down to a 7. She can handle a 7. She only takes enough to easy the pain to where she can stop being curled up in the fetal position. You can tell that even at a 7 she is still in alot of pain, when she goes to the restroom she walks very slowly hunched over. Getting in and out of the car takes a long time as well. We are both well aware of the risks the dilaudid has and she tries to hold out on the meds as long as she can.
The pain itself is not spasm like, however she does get muscle spasms every so often, this is new and just started, we think its just a minor side effect of the dilaudid, something we can live with for now since the dilaudid is the only thing that is relieving her from her pain.
I don't know what dicyclomine is so I couldn't tell ya.
On the plus side. We went to the chiropractor today for her 2nd visit. She was a 7 in pain when we went in there and a 7 in pain when we left, this after all of the adjusting. Yesterday she was a 7 going in and a 10 leaving. We've been home now for roughly 2 hours now and she is still a 7 and she hasn't taken her pain meds in over 5 hours (usually she has been taking them every 2 hours).
I'm praying this is our answer... Will keep you updated.
Although she has been on the Dilaudid for over a month now (wow, just realized it has been over a month), I don't think she is dependent on the drug. From my understanding being dependent/addicted would make you feel like you need it or you want it, or have to have it. In her case I don;'t think so. Her pain levels get to a 10/10 and she curls up in the fetal position crying like crazy in pain. I don't think thats an addition, she is in extreme pain and the dilaudid helps relieve her pain down to a 7. She can handle a 7. She only takes enough to easy the pain to where she can stop being curled up in the fetal position. You can tell that even at a 7 she is still in alot of pain, when she goes to the restroom she walks very slowly hunched over. Getting in and out of the car takes a long time as well. We are both well aware of the risks the dilaudid has and she tries to hold out on the meds as long as she can.
The pain itself is not spasm like, however she does get muscle spasms every so often, this is new and just started, we think its just a minor side effect of the dilaudid, something we can live with for now since the dilaudid is the only thing that is relieving her from her pain.
I don't know what dicyclomine is so I couldn't tell ya.
On the plus side. We went to the chiropractor today for her 2nd visit. She was a 7 in pain when we went in there and a 7 in pain when we left, this after all of the adjusting. Yesterday she was a 7 going in and a 10 leaving. We've been home now for roughly 2 hours now and she is still a 7 and she hasn't taken her pain meds in over 5 hours (usually she has been taking them every 2 hours).
I'm praying this is our answer... Will keep you updated.
MEDICAL PROFESSIONAL
Hi,
I was wondering if you had any idea about her current hCG levels?
This is a hormone secreted by the placenta to help maintain implantation of the fetus and is necessary for continuation of normal pregnancy.
hCG is also the main factor responsible for increased vomiting and nausea?
hCG increases steadily throughout early pregnancy and reaches peak levels between 14-17 weeks of pregnancy (which is when all early pregnancy symptoms worsen).
It is best to stick with one form of management for any disorder. The hip alignment and spine alignment will not be an issue in the first and second trimesters of pregnancy.
So that may not be the reason for her pain right now.
It is possible that she has developed dependence on the pain medication (given its high potential for addiction).
Is her pain spasmodic?
Have you been able to identify whether she has ever received any dicyclomine since this problem started?
It is harrowing to go through weeks of treatment and hospitals without knowing what exactly the problem is and not having the right environment to come to terms with the impending addition to your family. A lot of emotional and psychological support is needed right now, so call up a few close friends and relatives who can be there to help get you through this.
Regards
I was wondering if you had any idea about her current hCG levels?
This is a hormone secreted by the placenta to help maintain implantation of the fetus and is necessary for continuation of normal pregnancy.
hCG is also the main factor responsible for increased vomiting and nausea?
hCG increases steadily throughout early pregnancy and reaches peak levels between 14-17 weeks of pregnancy (which is when all early pregnancy symptoms worsen).
It is best to stick with one form of management for any disorder. The hip alignment and spine alignment will not be an issue in the first and second trimesters of pregnancy.
So that may not be the reason for her pain right now.
It is possible that she has developed dependence on the pain medication (given its high potential for addiction).
Is her pain spasmodic?
Have you been able to identify whether she has ever received any dicyclomine since this problem started?
It is harrowing to go through weeks of treatment and hospitals without knowing what exactly the problem is and not having the right environment to come to terms with the impending addition to your family. A lot of emotional and psychological support is needed right now, so call up a few close friends and relatives who can be there to help get you through this.
Regards
My sister-in-law suggested we go see a chiroprachtor. Her chiropractor in fact, because he specializes in child birth. He has some certification about breached pregnancies and I guess deals with alot of patients that have similiar symptoms.
So... we go see this guy today. He claims he can relieve her pain in 10-12 days. A known condition of my wife is that her right leg is shorter than the left. The chiropractor tells us that due to this it has shaped her hips out of alignment which he believes is causing her left flank pain. He also told her she has about 75% of her spine out of alignment which could also be contributing to her pain.
He gives her an adjustment and tells her to put ice on her lower back for 50 minutes on and then an hour off for the remainder of the night.
We get home and my wife is in extreme pain from the previous dose of dilaudid running out along with the added pain from all the adjusting the chiropractor did. 4 hours go by and she is still in extreme pain and she asks me to take her to the hopital ER.
Now, here we are in the ER awaiting for blood and urine results to come back in which we are 100% positive that when they get them back they will tell us there is nothing they can do and send us back home.
After we left the chiropractor I had called some friends and family, they both told me about underlying issues about having a MD and seeing a chiropractor. I guess MD's don't like it for you to see chiropractors because of the liability or something like that.
What are your thoughts on her hip being out of alignment? and could that really be the cause of all her pain? and what exactly are the risks/complications of seeing a chiropractor while she is pregnant?
So... we go see this guy today. He claims he can relieve her pain in 10-12 days. A known condition of my wife is that her right leg is shorter than the left. The chiropractor tells us that due to this it has shaped her hips out of alignment which he believes is causing her left flank pain. He also told her she has about 75% of her spine out of alignment which could also be contributing to her pain.
He gives her an adjustment and tells her to put ice on her lower back for 50 minutes on and then an hour off for the remainder of the night.
We get home and my wife is in extreme pain from the previous dose of dilaudid running out along with the added pain from all the adjusting the chiropractor did. 4 hours go by and she is still in extreme pain and she asks me to take her to the hopital ER.
Now, here we are in the ER awaiting for blood and urine results to come back in which we are 100% positive that when they get them back they will tell us there is nothing they can do and send us back home.
After we left the chiropractor I had called some friends and family, they both told me about underlying issues about having a MD and seeing a chiropractor. I guess MD's don't like it for you to see chiropractors because of the liability or something like that.
What are your thoughts on her hip being out of alignment? and could that really be the cause of all her pain? and what exactly are the risks/complications of seeing a chiropractor while she is pregnant?
You may want to consider getting a copy of the book "A Headache in the Pelvis" which covers CPPS in various forms. Essentially, this sort of problem can be caused by tension in the muscles of the pelvic floor. The explanation may sound ridiculous, but a lot of people have been helped by the treatment outlined in the book. Since you've already exhausted your other options, this may put you on the right track. In any case, I don't think it can hurt anything. Please note, I'm not an expert, just a layman looking for answers like yourself.
Yup, that sound just like her. We are at home now. The doctors gave us a rude awakening the other day. Came in at 4:45pm and told us. "The test results from your MRI are negative so we have prepared your paperwork". "Paperwork?", we said. "Yes, your discharge papers" said the doctors. Needless to say we were outraged. I was FUMED and very loud. How the hell could they discharge a patient who is crying her eyes out at the 1:45 mark waiting to get her IV push of dilaudid that comes every 2 hours. They sent her home with oral dilaudid and phenergan.
Needless to say I will badmouth that hospital to who ever I speak to for the rest of my life. The doctors there GAVE UP !!! It was my impression in life that doctors are the ones we turn to for answers. Hell thats why they spend all their lives in school and work, to help heal people like my wife. These doctors have given up on my wife, who are we to turn to now for answers?
3 hours after we got home she was in tears as usual. We went to the ER of a different hospital. This makes our 3rd hospital now. They take her in, give her meds to calm her down and do the usual tests. 3 hours later they come in with discharge papers too! "Sorry, we can't find anything wrong, follow up with the urologist that put the stint in".
We have been home now for 2 days. She is taking dilaudid that is supposed to be 1 every 3 hours but she is taking it 1 every 2 hours. She has only left the bedroom to pee. This is not how a pregnant person should be living through thier pregnancy.
We are desperate for answers.
Needless to say I will badmouth that hospital to who ever I speak to for the rest of my life. The doctors there GAVE UP !!! It was my impression in life that doctors are the ones we turn to for answers. Hell thats why they spend all their lives in school and work, to help heal people like my wife. These doctors have given up on my wife, who are we to turn to now for answers?
3 hours after we got home she was in tears as usual. We went to the ER of a different hospital. This makes our 3rd hospital now. They take her in, give her meds to calm her down and do the usual tests. 3 hours later they come in with discharge papers too! "Sorry, we can't find anything wrong, follow up with the urologist that put the stint in".
We have been home now for 2 days. She is taking dilaudid that is supposed to be 1 every 3 hours but she is taking it 1 every 2 hours. She has only left the bedroom to pee. This is not how a pregnant person should be living through thier pregnancy.
We are desperate for answers.
ok so you just explained my life in a nutshell...basically i'm 23 and 33 weeks pregnant and this is my 2nd so so healthy pregnancy.. i've had 7 miscarriages but i will say on your behalf it was nothing to do with the kidney problems i've had... i have a 2 yr old little boy( AS OF THE 15TH OF JUNE HE'LL BE 2) and like i said am 33 weeks pregnant with a little girl... my first 'healthy' pregnancy they put a stint in my left uterer also and it never released the pain i hate to say.. and i spent atleast 2 weeks of every month in the hospital with no stone and no diagnosis other than chronic kidney infections they put a stint in that time that had a string that hung outside of the body and the stint was removed during my last hospital stay before the baby was born.... although they wanted to put another in i refused cause i remembered the pain..... this pregnancy all was doing good untill april 8th i went into the hospital with a kidney infection and they admitted me and put another stint in in the same place saying that it would keep me out of the hospital as much..., well it has but only because i need a good babysitter for my son... i have been in so much pain and without my husband i wouldn't have made it i'm convinced....without phenergan i throw up everyday from so much pain and its terrible... i've already ,ade plans to go back to the er tonight because i am 2 weeks past due of having this stint removed... this one has no string... i want it removed and nothing placed back in but my ob dr swears i will hurt worse and will have more problems without the stint which is hard to picture right now.... i just know i'm ready to have this baby cause i never have kidney problems when i'm not pregnant.... don't get me wrong with all the prob;ems i've had i'd go through the pain anyday to get o have my child but i'm not sugar coating it for you... its painful... very painful... they have me on lortab and they alternate it with percocet but all that does is mess with my head... the pain never goes away unless i'm in the hospital recieving pain meds by iv....and when i'm in the hospital the nurses are you know whats cause they think i don't need the meds being pregnant and i understand that fully but by goodness i can't live with the pain... i cry daily i hurt so bad and can never ever ever get comfortable...i pee blood and it hurts so bad just to pee which i constantly have to do... they are gonna take the baby in 3-5 weeks but that seems like a lifetime away but i know how important on the baby it is that i wait.....last time i was in the hospital they were alternanting demerol by iv and percocet by mouth.... they dropped the demerol one night and i cried and cried and cried cause nothing and i mean nothing relieved the mpain and you know what the on call dr did... instead of ordering something for pain ordered a sleeping pill to shut me up... and that was the drs words.... she didn't realize it was me she was talking in front of and i heard her say it..... needless to say we neither one had a good night that night.... my husband can't leave me there alone or thats the things they do to me... if hes there they treat me like gold...... anyways my little boy is waking up so i have to go.... i know what i said is not a help to you cause i told you what you didn't want to hear but like i said... i wouldn't want someone to sugar coat it for me... i hope your wife does better than i am and all turns out great for the both of you God bless you both and i will be praying for you and your baby please do the same for us.... if you would like e-mail me at ***@**** its my moms email addy but i'm the only one that checks it usually... i don't know if i'd be able to find my way back to this site lol have a great day and agian i really hope things get better for your wife
gina in alabama
gina in alabama
After the weekend stay with her at the hospital I am back home to do some work. We have had an MRI of the gall bladder and the pancreas and are still waiting for the results on those. However we seen a Urology specialist and from the sounds of it he believes it is not related to kidney stones. He believes she is suffering from Chronic Pelvic Pain Syndrome. He briefly told me a little about it and I will research it some more tonight after I get some work done. I bought a lap top and it comes in through UPS today so I'll have it tonight at the hospital.
Basically he believes the nausea and vomiting is triggering the CPPS and that once she passes her first trimester and stops vomiting then it will all go away. Unfortunately the only way to truly diagnose CPPS is with a lot of radiation which is not an option at this time. Currently they have her on a 25mic fetinal patch (getting upgraded to a 50mic today) and 1mg dillaudid every 2 hours. She is in a lot of pain at the 1:45 mark so we are pressing the call light early every time. If the nurse doesn't make it in by the 2:10 mark she's in tears and has a very difficult time handling the pain. Hopefully the 50mic patch will help her in that last 15 minutes. We have an Anestesia team monitoring her pain and see them every day to try to come up with a solution to keep her comfortable.
I'll post more a little later tonight when I get back to the laptop with my new laptop, got to get some work done.
Basically he believes the nausea and vomiting is triggering the CPPS and that once she passes her first trimester and stops vomiting then it will all go away. Unfortunately the only way to truly diagnose CPPS is with a lot of radiation which is not an option at this time. Currently they have her on a 25mic fetinal patch (getting upgraded to a 50mic today) and 1mg dillaudid every 2 hours. She is in a lot of pain at the 1:45 mark so we are pressing the call light early every time. If the nurse doesn't make it in by the 2:10 mark she's in tears and has a very difficult time handling the pain. Hopefully the 50mic patch will help her in that last 15 minutes. We have an Anestesia team monitoring her pain and see them every day to try to come up with a solution to keep her comfortable.
I'll post more a little later tonight when I get back to the laptop with my new laptop, got to get some work done.
Yes Dilaudid is what she is taking. No pain in her thighs, legs, or back of knees. They tried giving her morphine a few times but that never seamed to help give her the relief that the dilaudid is.. Not sure about the Dicyclomine, Ill have to ask. Her appendix has never been checked even though we asked about it to all doctors. They told us that her symptoms do not suggest anything wrong with the appendix so they have never checked it. Her WBC are normal.
MEDICAL PROFESSIONAL
Hi,
Is the drug she is on called Dilaudid?
Persons with history of kidney stones, or a predisposition to the same, can have exacerbations during pregnancy. This is due to the effect of progesterone on all smooth muscles (relaxing) which results is some amount of stasis resulting in constipation and sometimes hydronephrosis (secondary to a kidney stone).
If she is on pain medication called dilaudid, you need to have it tapered off ASAP. It has a very strong possibility of causing dependence and is teratogenic in animal studies (affects the unborn fetus adversely).
It is also to be used with caution in individuals with underlying kidney disease.
Does she have pain on the inner aspect of her thighs or at the back of her knee? Just check with her when she has been off the pain meds for sometime.
"Pregnancy Implications
Hydromorphone was teratogenic in some, but not all, animal studies; however, maternal toxicity was also reported. Hydromorphone crosses the placenta. Chronic opioid use during pregnancy may lead to a withdrawal syndrome in the neonate. Symptoms include irritability, hyperactivity, loss of sleep pattern, abnormal crying, tremor, vomiting, diarrhea, weight loss, or failure to gain weight."
www.umm.edu/altmed/drugs/hydromorphone-065100.htm
It may be that she has a small stone that is passing down her ureter slowly, causing this on-and-off pain.
Has she been given any medication containing dicyclomine for the pain?
You can check with her records and suggest that she takes it for pain relief once. It will take about 20-30 min for it to effectively work, but if it provides relief, you can strongly suspect a renal stone.
Vomiting and inability to keep down food will result in fat breakdown, which releases ketone bodies, which in turn cause vomiting.
The only way to break this cycle is to make sure that she eats something light every 30 min to 1 hour.
make her drink at least 2000 ml of fluids per day, preferably more.
try to make her walk with assistance.
apply heat over the area with pain.
constipation is a normal part of early pregnancy. provide a high-fiber diet to counter this.
Was her appendix evaluated by USG? Are her WBCs normal in count?
Do keep us posted on doubts and progress.
regards
Is the drug she is on called Dilaudid?
Persons with history of kidney stones, or a predisposition to the same, can have exacerbations during pregnancy. This is due to the effect of progesterone on all smooth muscles (relaxing) which results is some amount of stasis resulting in constipation and sometimes hydronephrosis (secondary to a kidney stone).
If she is on pain medication called dilaudid, you need to have it tapered off ASAP. It has a very strong possibility of causing dependence and is teratogenic in animal studies (affects the unborn fetus adversely).
It is also to be used with caution in individuals with underlying kidney disease.
Does she have pain on the inner aspect of her thighs or at the back of her knee? Just check with her when she has been off the pain meds for sometime.
"Pregnancy Implications
Hydromorphone was teratogenic in some, but not all, animal studies; however, maternal toxicity was also reported. Hydromorphone crosses the placenta. Chronic opioid use during pregnancy may lead to a withdrawal syndrome in the neonate. Symptoms include irritability, hyperactivity, loss of sleep pattern, abnormal crying, tremor, vomiting, diarrhea, weight loss, or failure to gain weight."
www.umm.edu/altmed/drugs/hydromorphone-065100.htm
It may be that she has a small stone that is passing down her ureter slowly, causing this on-and-off pain.
Has she been given any medication containing dicyclomine for the pain?
You can check with her records and suggest that she takes it for pain relief once. It will take about 20-30 min for it to effectively work, but if it provides relief, you can strongly suspect a renal stone.
Vomiting and inability to keep down food will result in fat breakdown, which releases ketone bodies, which in turn cause vomiting.
The only way to break this cycle is to make sure that she eats something light every 30 min to 1 hour.
make her drink at least 2000 ml of fluids per day, preferably more.
try to make her walk with assistance.
apply heat over the area with pain.
constipation is a normal part of early pregnancy. provide a high-fiber diet to counter this.
Was her appendix evaluated by USG? Are her WBCs normal in count?
Do keep us posted on doubts and progress.
regards
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