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Undiagnosed Symptoms Community

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What do I do now?

by java_jaime1979, Apr 22, 2008 09:03AM
I am a 28 yr old female that has had severe, sharp pelvic pain since January.  I am unable to work because of the pain.  I have been to several doctors trying to figure out what is wrong with me.  I have had all kinds of blood work done and everything shows normal.  I did a hemacult test and that came back normal.  I have had Xrays, Ultrasounds and CT scans and the only thing that showed up on the CT scans were a couple of small kidney stones that 2 different urologists state are not the cause of my pain.  A colonoscopy showed one sessile serrated adenoma polyp that they removed and one area of diverticulosis and the doctor said that neither of those things would have been causing my pain.  After seeing two different gynecologists and having 3 pelvic exams, one doctor thought I had an infection in my fallopian tubes and prescribed me two antibiotics.  That didn't help and the pain worsened.  He finally decided to do exploratory laparascopy and a D&C because I also hadn't had a period for 3 months.  The exploratory showed only 2 cysts on my ovaries that he drilled, drained and cauterized.  He told my partner that wouldn't have been the cause of my pain.  The results of the D&C were normal other than one polyp that was removed.  Now doctors are stumped and basically telling me they don't know what to do and that they may never find the cause of my pain.  I am also seeing a chiropractor now 3 times a week.  My regular doctor is sending me to a pain specialist.  Does anyone have some advice about where I should go or what I should do next?  Doctors have also prescribed me several different pain meds and none of them have helped so I just stopped taking them.  
Member Comments (11)

by Cosmogal, Apr 22, 2008 04:37PM
Where is the pain exactly? Does this extend to the back? Have you ever been pregnant? Do you have any vaginal pain or uretha pain? Does this come and go or is it continously? Does this effect your bowel movements at all? Besides having no cycle for 3 months are there other female related problems? Is there anything else that you think may be unrelated that you haven't given us? I would love to help you cause it seems like you are at a crossroads. Also are you overweight at all or underweight? Any change in your hair, losing it or growing elsewhere? How is your skin? Dry, oily, color change?? Anything at all will help!
Thanks

by java_jaime1979, Apr 23, 2008 12:00AM
The pain is in my lower abdomen (below my belly button) and pelvic area and lower back on both sides.  Yes I have had one wonderful pregnancy about 4 1/2 yrs ago.  I don't have any vaginal pain, but sometimes there is pressure when I have to pee.  I have a history of ovarian cysts and kidney stones, but no other female problems.  I am probably about 10-20lbs overweight right now because I am inactive due to the pain.  I don't believe that there is any change in my hair.  My skin tends to be oily, but always has been.  There is no change in my bowel movements either.  The pain is continuous.  Nothing helps, so any ideas would be great because I am so frustrated and never have any relief from the pain.

by Cosmogal, Apr 23, 2008 07:17AM
I would have a complete workup on your hormone levels and check for a thyroid condition. I would demand them check your hormone levels cause cysts and you lack of a period can signal polycystic ovarian disease. It can cause pelvic pressure, cysts, and when they burst it can cause extreme abdominal pain. I have had that happen. If I was standing I would have a burning sensation and pain in my lower abdomen. Nothing would touch the pain. Unfortunately when they burst they leave all evidence behind. So by the time I got an ultrasound it was gone and they didn't see anything.
You could also have interstitial cystitis. You should follow up with a urologist, not a regular practioner. With your history of kidney stones its a strong possibility this could be it. Do a google search on this and you will find that it is very similar to what you are experiencing. I hope you get some relief soon.

by java_jaime1979, Apr 23, 2008 07:23AM
Thank you so much for your advice.  Doctors have checked my hormone levels along with doing every other blood test they can think up.  They say my thyroid hormone levels are around 1 and I know that is normal.  I have been diagnosed with PCOS in the past, but doctors are telling me that isn't the cause of my pain this time.  I have seen 2 urologists and one had suggested interstitial cystitis, but then after and exam decided he didn't that that was it either.  See my frustration?  I am now seeing a chiropractor on a regular basis to see if it something structural instead of internal causing my pain.  
It sounds like you went through a lot yourself.  I certainly hope you are feeling better now and have gotten all of that straightened out.

by Cosmogal, Apr 23, 2008 01:34PM
Yep, I had a hysterectomy so I am good. In fact I haven't had any problems since. I see your frustration. Thing is with PCO you can't always see when you have had a cyst. They come and go. Is this pain localized to one spot or is it the whole lower abdomen? You could also have a test done where they go in vaginally and insert and dye into the cervix and it will go through the tubes. You could have scar tissue inside the tubes. They will be able to tell if you have a blockage in your fallopian tubes.
What did the urologist do to see if you had internal cystitis? I am sorry you are having such a difficult time. I hope you find a good doctor that can help you.

by stephlovespeter_xo, Apr 23, 2008 04:30PM
To: java_jaime1979
I'm really sorry to hear about everything that you're going through. I am much too familiar with extreme pelvic pain. I as well had to stop working in July of last year due to chronic pelvic pain and large ovarian cysts. I ended up having to go in for surgery