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.

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(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.

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(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....

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11 Replies:

  • 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?
    Kemble 5 Replies Flag this Response
  • We got home from the ER at 6am this morning. Fell asleep around 6:30am. Woke up late cause we didn't hear the alarm go off since we were exhausted from yet another long night in the ER. My wife took her 2mg of dilaudid pill at 9:30am. We were at the chiropractor by 10:00am. Her pain was at a 7 before we walked into the chiropractor. He did his adjustments and said things were much smoother than yesterday. We left the chiropractor with her pain at a 7 (much better than yesterday when we went in at a 7 and walked out at a 10). It is now 1pm, 3.5 hours since her last pain med and she says her pain is still around a 7. Thats amazing !!! Over the past week she has not been able to go 2 hours without reaching a 9 or 10 and here we are past the 3 hour mark with the 4th hour mark in our grasp. However this could be a fluke or could be related to the chiropractic adjustments, who knows.... I don't want to get too excited so soon and jinx ourselves but I'm praying that this could be the answer to our prayers.
    Kemble 5 Replies Flag this Response
  • Chiropractic is good, but I would also highly suggest trying acupuncture...it is so very helpful and is a much less toxic choice than all the pain meds she has been taking. Acupuncture will help her pain, help her nausea, and get her back on track. Please try this - it works! Best wishesDOM
    acuann 3080 Replies Flag this Response
  • heh thats walking on thin ice. I asked her to try it last night and she gave me those devil eyes. She said, "You seriously want me to voluntarily stick myself with needles after spending a month in & out of the hospital". It takes IV techs 2-3 tries to get IV's started because of all the IV's she's had in the past month. Her arms are all yellow and purple from the bruising. :(I'll ask her again. We'll see...
    Kemble 5 Replies Flag this Response
  • heh thats walking on thin ice. I asked her to try it last night and she gave me those devil eyes. She said, "You seriously want me to voluntarily stick myself with needles after spending a month in & out of the hospital". It takes IV techs 2-3 tries to get IV's started because of all the IV's she's had in the past month. Her arms are all yellow and purple from the bruising. :( I'll ask her again. We'll see... Oh my, she is seriously misinformed about acupuncture - it is NOTHING like an IV!!!!! NOTHING! The needles are about the size of five human hairs - very, very thin!! Acupuncture releases endorphins, natural pain killer hormones. It is an extremely relaxing treatment - many of my patients fall asleep during treatment. Please have her read this post and visit www.acufinder.com for more info on this form of medicine. I have treated pregnant women and they often report incredible relief from their pain. I have even helped a women in breach turn her baby around and have a smooth home labor. I have treated many patients who are "scared" and after the treatment they feel pretty silly:rolleyes:. Can't recommend this highly enough. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I will pass on the info. She's finally resting and I will let her read this after she gets up.
    Kemble 5 Replies Flag this Response
  • I would be suspicious of anyone who would claim to cure her with an adjustment; his ego is over his head. However, if he helped her, she might want to consider this as an option. I don't think any chiropractor in his right might would want to touch her, but yes, with her back being so out of alignment, it could totally affect her condition. It's really none of the medical profession's business how you two decide to treat this condition. Obviously, they are not treating her. She needs a high risk OB doctor. I am also concerned that the medications will adversely affect the unborn child and would read up on it online.She has a multitude of problems, most likely.Likewise, she is mis-informed about acupuncture; it feels great when the needles go in--releasing the pain. Once again, I don't know if you can find someone who would risk the liability. Have you considered that her pain is from a virus on her nerves, like shingles or an STD like herpes (without the rash). Herpes will cause a lot of trouble with the urinary tract, too. If it is more of a nerve pain, try a blood test for herpes and there are other conditions that settle in the nerves. It's a long shot but you might then know what is causing all the pain.
    Monsterlove 2921 Replies Flag this Response
  • I am still thinking that it might be something with her left kidney. Have they checked the blood supply to her kidney? Both arterial and the venous drainage. This is a long shot but I will mention it any way.There is a condition called nut-cracker syndrome. It is when the left renal vein is compressed between aorta and the superior mesenteric artery and for each heart beat is “cracked” as a nut in a nut-cracker. The symptoms are left flank pain; sometimes there is blood in the urine, sometimes only little which requires a blood test. It can often be silent, without symptoms but in pregnancy there is a big strain on the ovarian veins and the left ovarian vein drains in left renal vein, so it could cause congestion in the left kidney. This can be checked with ultrasound, which means no radiation. The pain from blood congestion is known to be very severe. The nut-cracker syndrome is rare, so this is a long shot, but I thought I’d mention it anyway.I hope your wife gets better soon! Good luck with the baby!
    Felsen 510 Replies Flag this Response
  • Thanks Felsen, I will mention it to the doctor.
    Kemble 5 Replies Flag this Response
  • im so glad to hear that your poor partner has you looking out for her. 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? I often see a chiropractor when i get pains.. my hips go out of alignment too and causes pain in the region your partner has (thou no where near as severe as hers). During pregnancy thou.. i had the pain worst and quite sharp. Chiropractors have fixed that issue for me and i hardly ever have to go and see one any more. Sometimes it may take several or so visits before noticable improvement happens. Plan for at least 6 visits if it appears to be helping some. A properly trained Chiro is fine to work on a pregnant women as they know what not to do in such situations.
    taniaaust1 2267 Replies Flag this Response
  • I would be suspicious of anyone who would claim to cure her with an adjustment; his ego is over his head. However, if he helped her, she might want to consider this as an option. I don't think any chiropractor in his right might would want to touch her, but yes, with her back being so out of alignment, it could totally affect her condition. It's really none of the medical profession's business how you two decide to treat this condition. Obviously, they are not treating her. She needs a high risk OB doctor. I am also concerned that the medications will adversely affect the unborn child and would read up on it online.She has a multitude of problems, most likely.Likewise, she is mis-informed about acupuncture; it feels great when the needles go in--releasing the pain. Once again, I don't know if you can find someone who would risk the liability. Have you considered that her pain is from a virus on her nerves, like shingles or an STD like herpes (without the rash). Herpes will cause a lot of trouble with the urinary tract, too. If it is more of a nerve pain, try a blood test for herpes and there are other conditions that settle in the nerves. It's a long shot but you might then know what is causing all the pain. Again, a good acupuncturist is trained to treat during pregnancy - there are certain points that are theoretically contraindicated and we don't use them during pregnancy. Of course, I would seek one who is trained in women's health. Whether chiropractic or massage or acupuncture...these are MUCH better choices for pain relief over medications that potentially will cross the placenta barrier. Best wishesDOM
    acuann 3080 Replies Flag this Response
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