Discussions By Condition: I cannot get a diagnosis.

1 Month + 7 Urologists + 3 OB's + 3 Hospitals = No Answers, Please Help !!

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Kemble
  • June 13, 2008
  • 04:46 AM

(Friday June 9th)

My girlfriend is 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 dilaudid. 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 a lot of weight (15lbs in 3 weeks). 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.

(Monday June 9th, 11 weeks pregnant)

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.

(Friday June 13th, 11.5 weeks pregnant)

Well... 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 (of the gall bladder and pancreas) 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 ***l 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. ***l 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 their pregnancy.

We are desperate for answers....

Reply Flag this Discussion

11 Replies:

Thanks! A moderator will review your post and it will be live within the next 24 hours.