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Abdominal abscess that doesn't show on CT scan
I've had GI issues of one kind or another ever since age 11 when I started menstruation. At age 25 I developed sudden onset severe pelvic pain and frequent diarrhea that would not go away which I suspect might have been a burst ovarian cyst but when I sought help I was dismissed as having IBS. I eventually had the usual routine tests- colonoscopy, upper GI tests, numerous CT scans which were all negative. It took 7 years to get an exploratory lap where they found a lot of adhesions and recommended a hysterectomy due to fibroids.
Throughout this time I had a weird sensation going through my left groin area and down into my thigh and leg. Like there was a pathway along with a swollen feeling from my buttock to my foot.. I figured it must be nerve irritation from whatever was going on in my abdomen and pelvic area.
I eventually had a vaginal hysterectomy and it got even worse. I started passing gas through my bladder and the part of the abnormal pathway through my left groin became very irritated and started to feel damp and had a foul odor. I tried talking to a CR Dr about it but he refused to consider that I could have an abscess or fistula because I had only officially been diagnosed as having IBS. He wouldn't even examine me.
Now I am about 30 years on and the problem still persists- the swelling from my buttock to my foot along with some kind of fluid that sometimes leaks through the pathway. Sometimes it is watery and feels like battery acid, other times it is cold and feels like pus. Both have a bad odor to them.
The swelling has recently gotten worse and now extends even further up into my shoulder area. I recently got over a two-year episode which I believe was related to having taken amoxicillin. Violent diarrhea and one day I noticed that eating sugar made me feel more bloated so I treated myself with a Candida protocol which began to lessen the diarrhea in about a week.
Over the past few months I have been having episodes of generally feeling unwell which I believe is related to the worsening swelling which I guess you could say is around the spleen area. A recent CT scan showed a normal spleen and didn't identify any abscess but I swear I can feel fluid moving around up there by my shoulder, arm and neck.
I am scheduled to see a gastroenterologist in a couple of weeks. Due to past experiences I don't have much hope of getting any help for what I'm convinced is an abscess and a very long fistula. It is a groin to thigh fistula which isn't as easy to identify as a typical one where there is an obvious opening to the skin. But they do exist. Any ideas for what I could say to the Dr to get him to seriously investigate this? Obviously CT scans have been of no help.
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Several years ago I went to a very good visceral massage therapist and also a physical therapist. Both of them immediately saw and commented on my swollen left buttock as well as a calcified pathway from my left groin that looked like it was pulled down into my thigh. This was before I even had a chance to say anything to them about my symptoms so there is in fact external evidence of it. But none of the Drs I went to were able to see it. All they saw was that the area was red and they swabbed it but the lab test didn't identify anything.
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2 ReactionsAfter so many years of symptoms and evaluations that haven’t provided an explanation, I can understand why you’re concerned about whether this upcoming appointment will be different.
One thing that stood out to me is that you have several very specific observations you can give the gastroenterologist — particularly having passed gas through your bladder, the drainage and odor you describe, the persistent swelling on one side, and what the massage therapist and physical therapist observed. Rather than having to convince the doctor that this is an abscess or fistula, I wonder if you might ask, “What could explain these symptoms, and what would be the appropriate way to investigate them if a routine CT hasn’t shown the cause?”
It might also be worth asking what findings would lead the doctor to involve another specialty, such as colorectal surgery or urology.
Since you mentioned recently feeling generally unwell as the swelling has worsened, I wouldn’t wait for the GI appointment if you develop fever, severe or rapidly worsening pain or swelling, vomiting, confusion, or otherwise become acutely ill.
You’ve been dealing with this for a very long time. For your upcoming appointment, do you have records from the hysterectomy or exploratory surgery that documented the adhesions, or any records describing the bladder symptoms or the swelling?
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2 ReactionsI wish that I had gotten the records for my exploratory surgery which was back in 1990 or 1991. I never understood why patients weren't automatically given a copy of the records. Now it seems like most records are electronic. My PCP was able to get records from quite awhile back after I signed a release but probably not that far. She does have adhesions mentioned in my records so at least she recognizes that I have them.
When the passing of gas through the bladder began after my vaginal hysterectomy back in 1998 I was referred to a C/R place where they acted like I was crazy when I told them about it. They did do some tests but once again I got no copies and they didn't seem to have much to say but with the dismissive attitude they seemed to have about it from the start I wasn't surprised. Makes me wonder if people who work in the specialty of C/R don't really like their profession?
I've also wondered if it was a mistake for telling them that the problem started after a surgical procedure, if that is somehow offensive to them. But at the same time I feel like I should be totally honest about all of the details. The gynecological surgeon who did the vaginal hysterectomy wouldn't give me the time of day afterwards. My follow-up appointments were a joke and he never once sat down with me for any questions or discussions. Just ran in and out while I was in the stirrups. I should have insisted on a traditional laparascopic hysterectomy since I already had issues in the groin area.
As far as the visceral massage and physical therapists go I have found that Drs have no respect for what they have to say which I find ironic because sometimes Drs actually tell you to go to them.
I have gone to the ER a couple of times in the past year during my episodes of generally feeling unwell. All they found was low potassium levels but they didn't connect it to the fact that I was having long term massive diarrhea which I believe was caused by the Amoxicillin I took in 2024. I am now on a prescription supplement for that but my other symptoms remain. I did feel at times that my insides were being damaged- like one might have with inflammatory bowel disease- but hard to say if any evidence of that will show up on whatever testing the gastroenterologist might order which I assume will be a colonoscopy. Not sure if that is the best test or not since it only shows the inside of the colon. If there are any small areas of leakage I don't know how obvious they would be. I know that I should just stick to my symptoms and not mention things like abscess and fistula but that approach doesn't always work either.
When I mentioned the upper left abdominal swelling and sense of fluid moving around to my PCP I think she thought I was nuts.
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1 ReactionOne bad thing about the leg swelling is that I have a history of a blood clot that caused a pulmonary embolism and likely TIA 8 years ago. The blood clot was in my other leg. Once you've had a blood clot your chances of getting more go up. Since my left leg is always sore and swollen it could make it difficult to detect if I had a blood clot which IMO should make it even more important to resolve the issue. I had an ultrasound on it a couple of months ago when it was hurting pretty bad but fortunately turned out negative for a blood clot even though a D-Dimer test showed elevation.