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As a result of hysterectomy, am left with a hole in my vagina through which fecal material passes. Cat scan did not show hole. Anyone with anything similar?
@trishanna What is it with our over-complicated plumbing??! As if having a hysterectomy wasn’t enough for you to go through. I’m so sorry you’re having these complications.
Apparently it has a name…rectovaginal-fistula. You had a CT scan which didn’t show a hole but it doesn’t mean it’s not there. If this were me in the same situation, I’d either insist the gynecologist do some more investigating and follow up on the symptoms or, get second opinion from another doctor. I know having all that attention paid to the ‘lady bits’ isn’t pleasant but what you’re living with is worse. So please make an appointment. 😉
Here’s the link to the article I found on the Mayo Clinic site. Will you do us the favor of reporting back when you learn more? Sharing your story and treatment could be very beneficial to other members in the future.
Hopefully you can get back to normal soon! Wishing you all the best, Lori.
Thank you so much for your reply. It has been an unbelievably bad experience, which has cured me completely of any shyness on the subject. So far, the only treatment is a follow-up CT Scan. I'm presuming another gynecological surgeon would be my choice, but we only have two, both of whom are linked. Was thinking of seeing my onc, probably my only choice. Do you know if I can request my records be reviewed by a doctor in another city, even though I cannot see him for an appointment. I'm 81 and my husband has Alzheimer's. Cancer was of course the cause of the hysterectomy and I cannot start chemo until this problem is solved. Shall read the link. Thank you again.
Have researched my rectovaginal problem and am now even more upset, if that is possible. Am thinking about going to a urogynocologist. Unfortunately, one of only two gynosurgeons is at the same location as the urogynocologist, and works closely with my surgeon. However, I am desperate. I have been led to believe we are waiting to see if healing occurs naturally. Can't possibly happen because I have IBSd and at some point, I will have diarrhea which will keep the vaginal hole open. Anyway, I'm venting. I've no where else to go. You needn't respond; consider it an update.
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Trish, this is so upsetting. I think that you might also be interested in this discussion where @blinken faces similar issues:
– Has anyone had personal experience with rectovaginal fistula repair? https://connect.mayoclinic.org/discussion/has-anyone-had-personal-experience-with-recto-vaginal-fistula-repair/
Hello Trishana, I am in a very similar situation as yours. I had rectal prolapse repair in August which left me with fecal incontinence. I have an eventful medical history since then and began posting here as Blinken with Teresa mentoring me who suggested you read my posts. As of now, two rectal surgeons have been unable to find the fistula by EUA (exam under anesthesia) and Barium enema. My original general surgeon did identify it in September during the procedure for a 'temporary" colostomy intended to allow the previous surgery to heal and allow access to repair the fistula going forward. The surgery for the repair was cancelled by my insurance company's Utilization Review" as they deemed the scheduling too soon after the colostomy to allow a good outcome for me. Long story short, I began having rectal stool output within a couple weeks after the colostomy surgery but in the meantime, stopped having vaginal output. I now am scheduled with a colorectal specialist for takedown of my colostomy. I am worried that the fistula is still there, laying undetected like yours is and it will become a problem after this surgery. If it can't be found, it can't be fixed, and like you, my research shows that fistulas rarely heal by themselves.
@coleenyoung. Eileen, thanks so much for finding @blinken. I shall reply to her later this afternoon, but she is the first and only person to actually talk to me about this. My medical folk including surgeon: "have a nice day and let us know if we can do anything."
I am angry, a bit scared, and sooo stressed. Thanks again for your help.
@blinken I cannot tell you how much I appreciate your writing to me. As you probably know better than I, it is as if I have developed some weird problem that no one has ever heard of and which no one cares to discuss. Right now, all I am told is to wait for another Cat scan June 22. And then what. Absolute silence. My research has already revealed procedures like a colostomy. My prayer is that since you have remained symptom free, when the colostomy is removed, everything will be fine. I now have regular rectal stools, but any liquid matter remaining in my colon still is expelled vaginally. One of my questions is similar to your insurance company's. I read six to eight months of healing before anything can even be attempted, and how can they do something when there's no indication of the source? I cannot live is this extreme ignorance, just sitting so as to not disturb anything. So, my first stop is a urogynocologist and second, my oncologist. I won't stop knocking on doors till I get some answers. This sounds terrible, but given my age and other physical problems, I think everyone's hoping I'll developed some other overriding condition. Sorry, but my cynicism is huge since I think the surgeon caused the hole.
When will the colostomy be removed? How have you coped with this? Have you had any other problems with your colon? Do you normally have diarrhea problems? How long after the rectal prolapse surgery was the colostomy attempted? Were your surgeons concerned about healing? Please only answer if you feel comfortable doing so. If you've any advice, please share.
Please take care. How is your health otherwise – good, I hope.
@trishanna It's always good to have someone to communicate with who knows what this condition means….on so many levels. Please do go forward with your plan to see a Urogynocologist. I had considered doing that but since I also had to address the colostomy, decided to seek a highly qualified colorectal surgeon. This man is the 3rd surgeon I've seen since this all began last August. If you refer to my original posts, I've outlined in detail all the incidents that led me to search out someone who I felt confident could find and treat my particular complicated situation. Like you, it's become a circuitous route of 'before we work on this problem we must address that problem, but before we address that problem, we must address yet another problem" and so on. I certainly sympathize with your frustration and anger at finding your self in this place and being forced to wait to begin chemo has to be devastating! I don't have answers to how to better seek out my own fistula location but I am anxious that the day I do the bowel prep before the colostomy reversal, the fistula will again open up. If that happens, this surgery will be cancelled and the search will continue.
My prolapse surgery was 8/20/20, I believe, and my post-surgical visit was 9/10 with the colostomy following on 9/13/20. I was in the hospital for 4 days following that and had home care nurses visiting for 6 weeks afterward. They helped with instruction as to the colostomy care and changing, fitting of the proper "appliance", etc. The woman who had been assigned to me was our angel. I don't know that my husband, my other angel, who did all the ostomy care for the first several weeks, could have managed without her. I had several ER visits in the following weeks, once for urinary retention, once for the ostomy leaking bloody stool, once for blood clot leading to taking Eliquis for 3 months….I finally sought out a different surgeon who did a digital exam in office and later EUA in hospital, neither of which showed the fistula. He seemed unsure as how best to deal with me and even suggested at my very first visit that I might be better served by going to a teaching hospital or larger, such as Mayo. From there I found the surgeon who I hope will be able to answer my quest to be done with the colostomy. I still have the nagging feeling that there will be a reason not to go through with the surgery or that it will be done and major problems arise afterward…..this may be because I have had nearly 6 weeks to think and stew over it, unlike the other surgeries, which were done as ASAP situations.
As far as healing goes, everyone I dealt with were concerned with the healing process. The in hospital treatment was extensive with before dawn blood draws, temperature checks, IV antibiotics, daily doctor visits and post op visits as well as oral antibiotics after discharge from the hospital. The actual healing of my rectum seemed to go as expected after the prolapse surgery and the homecare nurse inspected the ostomy opening at every visit. Home care must be requested by your doctor and because I had a difficult recovery after the ostomy with nausea (antibiotics cause this in me) and being unable to eat, causing weakness, etc. etc. etc. it was ordered. I don't know if just having a new colostomy would have warranted this or not. There was no cost involved for me, even for the ostomy supplies which they provided!!! I could hardly believe I was so fortunate to receive care like that for 6 weeks!
I hope you can get some answers to your plight. I think your decision to see the Urogynocologist is very smart. These days we must become proactive in our care and in order to do that, gain as much knowledge as we can by our own research. That being said, not everyone's situations will have the outcome that yours or mine might and the route they took may not fit your situation. We need to sift through all those online posts and try to find the ones that make the most sense to us. I live in a small resort community and we are a couple of hours from my current surgeon/medical complex. I have always thought that 'it isn't because a hospital is a much bigger building than my local hospital, but rather, it's the staff who work there that make it work. I can't say enough about the nursing staff at my local hospital-I felt the most cared for there than at either of the other two places, even the large complex I as now going to.
I'm wishing you the best of luck. Please don't hesitate to reach out and let me know your progress. I care! I'll listen and will answer you back.
@blinkin @colleenyoung Coming up on four month anniversary of my hysterectomy and I have nothing good to report. I've been in and out of the hospital with sepsis, blocked colon, of course the on going fistula, and absess. I've taken a ton of antibiotics. Made appointment with arogynocologist, who kept me waiting 45 minutes in his cold examination room, and then explained that he could not see me because I was still under the care of the cancer-gynocologist (I was sick for a week following with a cold thing). So, I have no more answers. I've had 8 or 9 CT scans and one more on the 31st. Think there are no answers for me. My health has deteriorated so there's no chance I can travel. Think my "medical team" has no answer. I know I have no answer. BTW, the results of the surgery were cancer free – they just wanted to do a pre chemo treatment. Please update on how you are doing.
For Colleen: can I request a review of my records by, say, Mayo Arogynocologists, without a physical visit?
@trishanna, I'm so sorry to learn that you have come no closer to the resolve of your complicated issues. Please don't give up! I wish I could advise you as to which way to turn from here and I know you feel you are at a dead end with no way out. I felt that way as well, even though my situation, though involved, was not nearly as complicated or debilitating as yours. I cried with relief when my surgeon said he was willing to reverse my colostomy. You asked me to report how I am doing and I am almost embarrassed to say that I'm doing quite well. I had the 'take-down' of the colostomy in mid-June, spent 2 days in the hospital and am overjoyed at not having 'the bag' anymore. My surgeon did the EUA procedure (twice) and a Barium enema study in an attempt to locate the fistula in the weeks prior. When all these efforts did not find one, he concluded that it had healed and proceeded with the take down. He did his exams rectally however and I wonder if a gynecologist would find it. I feel that I still have the fistula even though I have had absolutely no output from the vagina since early January of this year. I did feel that I occasionally passed gas from the vagina though and it seems that I still do once in awhile..usually when I feel there is stool coming down into the rectal area before a BM. I will not further pursue it though unless I begin to again pass stool from there. Things are not exactly as they were before all this began about a year ago. Instead of one a.m. BM daily, I now go several times a day. I have been able to control the BM's, which was a worry for me and my surgeon. I learned to recognize when I needed to go to the bathroom-the sensations are a little different now. Also, I have not been in a situation where a bathroom is not available within a few minutes time so I'm unsure how successful my control would be in that case.
I wish the best for you. Please don't give up! I was hesitant to seek out medical help away from my location but even though we had many trips over 1 1/2 hours one way and several overnights in hotels, in the end it was worth the effort and expense. I did extensive online research to find the surgeon who claims he "didn't do much" and I had to wait less than 3 weeks for my first appointment. He has been published for his findings in rectal/colon surgery, techniques, and one of the highlighted areas of expertise was take down of colostomy.
Wishing you the best-please don't give up!
Trish, yes, virtual visits are sometimes an option for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs. Read more about Virtual Visits at Mayo Clinic here: https://www.mayoclinic.org/covid-19
Inquire further and request an appointment here: http://mayocl.in/1mtmR63
@blinken So happy to hear you are doing so well. I think your story shows how important research is in helping with our own treatments. I have been hesitant to go outside our medical facilities but the non answers continue to pile up. All my only surgeon can offer is major surgery to "fix" a partial colon block. Last week, had a CT scan (9 or 10) with Contrast. Ended up with pain of a month ago. Third time I've thought fistula might be closing. Each time, some procedure insisted upon reopened it. I ask questions about diarrhea, colon problems, etc., and receive only vague answers. Have not been referred to a colorectal\prostrate surgeon at all. Think my surgeon thinks she knows it all. So, thanks to Colleen Young, I'm going to make an appointment with a Mayo colorectal surgeon. Do you think as I see a decrease in discharge vaginally that that could be a sign of healing? Are you instructed to avoid diarrhea, which is another area my medical team sabotages over and over. Hope I am doing the right thing, but I look like a refugee from a horrible concentration camp. Think if I survive my surgeon's wide open surgery, I'd spend the rest of my life in a nursing home. Look at the damage from the hysterectomy! Take care.
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