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Bowel/gynecological/urological problem

I am a 23 year old woman, and have had problems with my digestive and urinary systems for years. I was diagnosed with IBS in 2007, given Bentyl and Levsin and told to just deal with it. I never liked this diagnosis because I am extremely healthy, in a great happy marriage, have no anxiety symptoms, deal with stress well, and lead a very balanced life.
At first, my symptoms were manageable, but I definitely had some hard times- diarrhea out of no where, constipation, nausea, etc. It was all very sporadic and hard to predict and find a pattern. One thing I was able to connect was that while on my period my abdomen was very painful, crampy, diarrhea, gas, bloating, general malaise. Also, I have had urinary symptoms that began around the same time in my life. I will feel like I have a UTI, burning during urination, extreme pain upon emptying the bladder, etc. but the lab rarely reveals any bacteria in my urine. However, there is almost always blood present, so I was referred to a urologist and she diagnosed me with interstitial cystitis and put me on a drug called Prosed DS.
My digestive symptoms persist, painful urination varying in severity and also pain during intercourse. The pain during intercourse and severity of both bladder and bowel symptoms lead me to think that something gynecological was to blame for all this. So I started extended cycling (taking birth control constantly) to see if this would help and it really did. I had painful periods before and this was good relief. However, in the last six months I had my gallbladder out and it was found as very necrotic. After this surgery I felt worse, constant terrible diarrhea and crampy pain. That has kind of subsided and now I am noticing that I have diarrhea often in the mornings and have a great deal of pain afterwords. Even when my stool is not diarrhea-like, I still suffer after a bowel movement, which is a new symptom in the last 4-5 months. The pain is odd. Sometimes it is lower, like in the rectum area, and sometimes deeper inside on the lower left side of my abdomen (colon area). It is stabbing and sharp pain, but can also be a dull crampy pain. It lasts for a few hours. I also sometimes feel faint and flushed during this painful time. My gastroenterologist diagnosed me with Crohns, then decided it wasn't that after a second endoscopy. So now he doesn't know what is wrong and I think he is ignoring that my menstruation is very much a predictor of the severity of my symptoms and he pays no mind to the urological symptoms. Endometriosis has occurred in my family before, and I wonder if this might be endometriosis, or something else? I should also mention that I am a vegetarian and I eat a very healthy high fiber lots of fruits and veggies diet. I really need help, my doctor just doesn't listen to my whole story, he just wants to correct the immediate problem. This is a long story, but I wanted to include everything that might be relevant. I need a "big picture" answer, any help or guidance would be great. Thanks so much!
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875426 tn?1325528416
An ultrasound would not have detected it.  In rare cases, like my endometrioma inside my ovary, or if there is an implant large enough inside the bladder, an MRI might pick it up, but for the most part, surgery is the gold standard.  You will want to be sure to get a thorough bowel prep and a skilled excising surgeon in case they find any on/in your bladder and bowels.  Your gall bladder, being in the upper right abdomen, would be a very rare place for the endometriosis to wind up & they wouldn't be looking down further for endometriosis in my opinion during such an operation.
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Avatar universal
Thanks for your reply. I should have been more specific about my questions. I am wondering if I actually have interstitial cystitis and IBS or if endometriosis is the cause of all my problems. My thinking is along the lines of Occam's Razor- the simplest answer is usually the correct answer. Instead of having all these issues, maybe I just have one issue.
My question to you, since you have had endometriosis is this, I have had an ultra sound of my abdomen and uterus done, would that have detected the endometriosis? Also would they have noticed anything during the laparoscopic removal of my gallbladder six months ago? Or is exploratory surgery the only way to know for sure? Thanks again for your reply.
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Avatar universal
Hello
you sure have had your hands full! When you mention having urine tests show up with blood and there is no infection, i imagine that is what my doctor is telling me. i just never understood how you can have so much pain urinating, and have red blood cells, white blood cells, and as one dr said to me your bladder is full of all kinds of crap. and then to have the culture come back a few days later, you get a call from your dr. saying that "nothing grew from the culture". but that is all he says. I have had 2 cystoscopes done and i assume all is alright. except one time they had to dialite my urethra (NOT a good thing at all) and i went bladder infection free for several months.
from what i gather from your post all kinds of reasons can result in 0 culture growth.
i just don't know what to do after that happens several times other that another cystoscope. the one time my doctor had referred me to a urologist who did an ultrasound on my kidneys as several bladder infections had backed up and he found fluid on the outside of my kidney. that was it - no further investigation.
anyway just wanted to tell you that your post was really helpfule.
thank you
mixedblessings
Helpful - 0
875426 tn?1325528416
First off, IBS is a form of dysfunction of the autonomic nervous system, and while stress can affect it, I don't know that it is the sole cause of it.  I was diagnosed with this myself in my teens.

Secondly, endometriosis can land on the bladder and the bowels.  While they told me my bowels showed no signs of it, I did have endometriosis on my bladder along with ligaments, etc..  Endometriosis inside the bladder can mirror all the symptoms of interstitial cystitis, including blood in the urine, pain, etc..  Mine was on the outside, but I also had a large fibroid pressing on my bladder and later, at the time of my hysterectomy, the dome of my bladder was found folded and stuck to my uterus with the sticky endometriosis.  I was having to go it seemed (and sometimes literally) about every five minutes.  

The fact you have a strong tie on with your period makes endometriosis seem a likely culprit.  Gold standard to verify you have it is surgery.  I didn't know I had it until my first laporotomy.  I was told it was severe.  They tried to push depo-lupron on me at that time and I refused, as family had researched and found it could have terrible side effects, plus could only be used short term anyway.  They laser burned me that first time.  For my complete hysterectomy, I had done research, and learned excision is the best method to remove what endometriosis they can see, as laser burning causes more scarring and potential for more adhesions, as the body views the burned material as foreign to it.  

(I read in the past that endometriosis in the bladder can actually be detected if it's a big enough implant by MRI, showing up as bluish on the film if I recall correctly.)  I had an endometrioma in my ovary diagnosed by MRI.  But in general, surgery is gold standard for diagnosing it.

I opted not to do any HRT, as it could potentially make any remaining endometriosis that was microscopic (they told me they couldn't get that kind) or that they didn't see grow.  Plus, the literature and a phone call verified even a low dose estrogen patch had the potential to change any remaining endometrial implant into cancer.   A complete hysterectomy meant I had both the ovaries, which stimulate with estrogen any endometrial implants removed.  Now I have osteopenia at thirty-something.   But I believe I would make the same decision again.

Thirdly, interstitial cystitis, something I was diagnosed with post-hysterectomy, can mirror all the symptoms of UTI, but you almost never have a positive test for infection.  I was told the best way to diagnose IC is cystoscopy with hydrodistension.  I had this done and came out twice- first doc said negative, second doc diagnosed it.  A very stringent IC set of dietary instructions was given to me.  Prelief OTC was mentioned to me for those infrequent times you decided to break the dietary rules.  I had a series (and still have as needed) of elmiron cocktail bladder instillations for IC, which I feel has been helpful.  Side effects of elmiron are considered much greater when taken orally.
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