Hello everyone,
I am so glad we all have each other to share with. Most MD's office just don't deal with the whole emotional aspect and some just make it all more difficult.
Jess, Just to answer your question, what finally helped for me was having the ostomy (ileo) and time. I had a flap surgery that didn't work and then, while waiting for a gyn surgeon appointment it healed on its own. He was going to do a test with water and a balloon, not sure if there was going to be dye involved, but when the time came I don't think he did. He just did a look see while I was under anesthesia. Altogether it was a year and a half with an ostomy, 6 months from the time I knew it hadn't healed, in June, to when I had my reversal in February. I do think our bodies try to get back to normal on their own if they can.
Flower, my last MD finally just looked and then told my CRS MD it was gone. I was very skeptical. Still don't know why he didn't do the balloon test that he'd planned but so far so good. Once in a while I imagine water going through when I need to do a water enema for my sphincter issue but I'm not 100% sure of that. But either way I could live with it.
Bee, I'm sorry to hear you're having some discharge but it sounds like it's only rarely, with diarrhea, which hopefully you can try to resolve quickly. Have you mentioned it to your MD? I wonder if he'd want to check it out. I am doing okay. Some days better than others. When I eat foods high in fat and or sugar, and I'm sure other foods, too, I have not good days. I had one day last week when I had to come home from work and then go back and was sore for 2 days. Other days I leave for work and nevr have to look back. I really need to do my food diary more religiously. How are you doing with work?
Guest, I am so sorry to hear about your long ordeal. I couldn't imagine going through what you have. I think I would have been resolved to the ostomy long ago. How do you keep going? I used an anti-depressant through the last 2 years and really found it helpful. Now that I've taken myself off I'm starting to feel some of those original emotions and trying to deal with them.
Bea, how are you doing? You have had to deal with so much. Are you continuing your research?
Penny
I am so glad we all have each other to share with. Most MD's office just don't deal with the whole emotional aspect and some just make it all more difficult.
Jess, Just to answer your question, what finally helped for me was having the ostomy (ileo) and time. I had a flap surgery that didn't work and then, while waiting for a gyn surgeon appointment it healed on its own. He was going to do a test with water and a balloon, not sure if there was going to be dye involved, but when the time came I don't think he did. He just did a look see while I was under anesthesia. Altogether it was a year and a half with an ostomy, 6 months from the time I knew it hadn't healed, in June, to when I had my reversal in February. I do think our bodies try to get back to normal on their own if they can.
Flower, my last MD finally just looked and then told my CRS MD it was gone. I was very skeptical. Still don't know why he didn't do the balloon test that he'd planned but so far so good. Once in a while I imagine water going through when I need to do a water enema for my sphincter issue but I'm not 100% sure of that. But either way I could live with it.
Bee, I'm sorry to hear you're having some discharge but it sounds like it's only rarely, with diarrhea, which hopefully you can try to resolve quickly. Have you mentioned it to your MD? I wonder if he'd want to check it out. I am doing okay. Some days better than others. When I eat foods high in fat and or sugar, and I'm sure other foods, too, I have not good days. I had one day last week when I had to come home from work and then go back and was sore for 2 days. Other days I leave for work and nevr have to look back. I really need to do my food diary more religiously. How are you doing with work?
Guest, I am so sorry to hear about your long ordeal. I couldn't imagine going through what you have. I think I would have been resolved to the ostomy long ago. How do you keep going? I used an anti-depressant through the last 2 years and really found it helpful. Now that I've taken myself off I'm starting to feel some of those original emotions and trying to deal with them.
Bea, how are you doing? You have had to deal with so much. Are you continuing your research?
Penny
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Hi there....New day...new challenges...!
Penny, thank you for the encouragement, I will keep the ostomy as long as I need to and I agree that time plays a huge role in any wound/situation healing. You mention spchinter issues....what kind of issues?, for it was a spchinto -plasty that got me in this mess to begin with, I had very little muscle control( for 17 years) and then had them overlapped and the RVF popped up. Sometimes I wish I had left things alone, I was dealing with life as it was, knowing when, what and how much to eat and knowing where all the bathrooms in the USA were located, I developed a sense that I could ferret them out where ever I was. I was just hoping for some relief from that. I know that my situation won't change as far as the amount of times I have to go to bathroom and the diarrhea even with the RVF healed, but the spchint-plasty did work as far as I know, so I should be able to "hold" it to get to a bathroom. Am I making sense? I tried to tell my CRS after the first surgery that I have this problem and he didn't seem to understand and it took a colostomy and months for him to finally have his aha moment. I was getting frustrated that no-one was listening at this "top hospital"......So no matter what I eat, fiber, no fiber, tree bark, toast, grass, and eat immodium...I still have the constant, frequent diarrhea even with the colostomy for I empty her 6-8 times a day and night. I know it's all aniexty driven too...due to a stressful in- law situation.
Bee, hang in there for it sounds like it could be on the right track..patience and I wonder if it's too soon for your MD to check it out.
Bea, how are things in your neck of the world? making progress? Want you to know that I'm thinking of you.
Well,"Stella" and I have a busy day ahead of us so I better get started now...
Take Care
flower
Penny, thank you for the encouragement, I will keep the ostomy as long as I need to and I agree that time plays a huge role in any wound/situation healing. You mention spchinter issues....what kind of issues?, for it was a spchinto -plasty that got me in this mess to begin with, I had very little muscle control( for 17 years) and then had them overlapped and the RVF popped up. Sometimes I wish I had left things alone, I was dealing with life as it was, knowing when, what and how much to eat and knowing where all the bathrooms in the USA were located, I developed a sense that I could ferret them out where ever I was. I was just hoping for some relief from that. I know that my situation won't change as far as the amount of times I have to go to bathroom and the diarrhea even with the RVF healed, but the spchint-plasty did work as far as I know, so I should be able to "hold" it to get to a bathroom. Am I making sense? I tried to tell my CRS after the first surgery that I have this problem and he didn't seem to understand and it took a colostomy and months for him to finally have his aha moment. I was getting frustrated that no-one was listening at this "top hospital"......So no matter what I eat, fiber, no fiber, tree bark, toast, grass, and eat immodium...I still have the constant, frequent diarrhea even with the colostomy for I empty her 6-8 times a day and night. I know it's all aniexty driven too...due to a stressful in- law situation.
Bee, hang in there for it sounds like it could be on the right track..patience and I wonder if it's too soon for your MD to check it out.
Bea, how are things in your neck of the world? making progress? Want you to know that I'm thinking of you.
Well,"Stella" and I have a busy day ahead of us so I better get started now...
Take Care
flower
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Hello to all!
I haven't been on in a few days because the little time that I feel okay after this operation I try and spend all of it with my son beacuse I feel as if yet once again I am missing out on time with him and now at his age 16 months today...he doesn't understand that mama can't hold him but for a minute and walks around behind me reaching up and whining; it is so sad that he doesn't understand. Just praying that this will be my last repair. I go to the doc wed for my 4 week post op and praying for good news and if I heal from this one all I have to have done is the colostomy reversal, yeah!!! I can't bear to think of any more operations and all the pain in this area!
I am so thankful for all of you; it is so hard and no one really understands as much as they try to except you, the ones going through the same things! I appreciate it. I got to a point to where I sometimes wonder is there hope anymore or will I just have to live with this colostomy which I really don't want to do....so I am pretty scared yet anxious to find out my final healing results because I have no idea what kind of operation would be next if this one didn't work. I just pray and give it all to my awsome God and he continues to carry me through and has blessed me with you all!
Have a great night to everyone. I have problems sleeping now...constant waking in pain so it's no fun and so then when I nap during the day it messes my night up keeping me up too late!
Okay...I'm done rambling now! thank you all again! Keep the encouragement coming and feel free to ask me anything! I am here for everyone also!
I haven't been on in a few days because the little time that I feel okay after this operation I try and spend all of it with my son beacuse I feel as if yet once again I am missing out on time with him and now at his age 16 months today...he doesn't understand that mama can't hold him but for a minute and walks around behind me reaching up and whining; it is so sad that he doesn't understand. Just praying that this will be my last repair. I go to the doc wed for my 4 week post op and praying for good news and if I heal from this one all I have to have done is the colostomy reversal, yeah!!! I can't bear to think of any more operations and all the pain in this area!
I am so thankful for all of you; it is so hard and no one really understands as much as they try to except you, the ones going through the same things! I appreciate it. I got to a point to where I sometimes wonder is there hope anymore or will I just have to live with this colostomy which I really don't want to do....so I am pretty scared yet anxious to find out my final healing results because I have no idea what kind of operation would be next if this one didn't work. I just pray and give it all to my awsome God and he continues to carry me through and has blessed me with you all!
Have a great night to everyone. I have problems sleeping now...constant waking in pain so it's no fun and so then when I nap during the day it messes my night up keeping me up too late!
Okay...I'm done rambling now! thank you all again! Keep the encouragement coming and feel free to ask me anything! I am here for everyone also!
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I just posted a post but then when sent it got a message that I would show up as a guest because I wasn't logged in..ugh..wish this site was better on those type of things but what can we do??? O well...it was me, Jess
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Hey Flower,
I just wanted to mention my post surgery sounds just like your presurgery. I'm still thinking about sueing though it's been 2 years now. I had a not very often situation, maybe 2 x per week of staining, more than anything and only when I walked for more than an hour and when I had diarrhea. Now I'm loose every day and do a lot more than stain. It's so hard not to look back. I complained to the Boston Medical License Association and he sent them a letter about me that was full of falsehoods. He is really unstable. He was unbelievably insulting. I need to sit down and respond to that letter but having to reread it is going to take some fortitude! He blamed me for the fistula, get that one. It was really due to his office that I had an impaction that caused internal damage. I'm am still struggling to find the right diet to deal with this. Did you have a way of dealing with things before the surgery? The diet or meds you used?
We're each on our own journey but it feels good to share, for sure,
Penny
I just wanted to mention my post surgery sounds just like your presurgery. I'm still thinking about sueing though it's been 2 years now. I had a not very often situation, maybe 2 x per week of staining, more than anything and only when I walked for more than an hour and when I had diarrhea. Now I'm loose every day and do a lot more than stain. It's so hard not to look back. I complained to the Boston Medical License Association and he sent them a letter about me that was full of falsehoods. He is really unstable. He was unbelievably insulting. I need to sit down and respond to that letter but having to reread it is going to take some fortitude! He blamed me for the fistula, get that one. It was really due to his office that I had an impaction that caused internal damage. I'm am still struggling to find the right diet to deal with this. Did you have a way of dealing with things before the surgery? The diet or meds you used?
We're each on our own journey but it feels good to share, for sure,
Penny
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Hi Penny,
First..it is most certainly NOT your or anyones 'fault" we get fistuals....How stupid was that remark? NOT very professional at all.
I would start running to bathroom first thing in morning steady until about noon, then slack off until around 3, then would be ok until 10 ish, sometimes I would make it thru the night...sometimes not, ergo the overlapping spchnto -plasty, ergo the RVF.........I would and still do, although the colostomy has provided some relief, eat whites.....rice, anything starchy and no whole grains, that sort of stuff, Eating a couple of marshmellows in the mornng seemed to " slow" me up" a bit and I would chew benefiber alot, anythingthat is known as INSOLUABLE FIBER seemed to bind me, and slow the runny stools. I tried to take immodium only if I had to, other than that when I knew I had to be somewhere, or was travelling, I just quit eating, which was not a good thing either....I was starting to take an anti-depressant about 2 weeks befoe the colostomy and that seemed to help too. Actually ladies, my life has improved with the colostomy...I can eat, shop, go to meetings, work and not head to bathroom 999 times.....
I plan on talking to a dietician in the future to see what he or she has to say about my diet, I did speak to one at CLE and she agreed with the insoluable fiber tactic....When you are ready to respond to the letter, do so in the most mature, matter of fact and adult way to show that you are a better person then they want to think. But...try not to look back and do not let the past mistakes chew on you, that also will have a huge impact on the bowels...I found that when I let the mom in law get to me, even something from long ago, I got worse.....so as my daughter says..letitgo...one word she says !!! It's hard though.
We are all here to support one another so don't despair, just one more day in our journey...
flower
First..it is most certainly NOT your or anyones 'fault" we get fistuals....How stupid was that remark? NOT very professional at all.
I would start running to bathroom first thing in morning steady until about noon, then slack off until around 3, then would be ok until 10 ish, sometimes I would make it thru the night...sometimes not, ergo the overlapping spchnto -plasty, ergo the RVF.........I would and still do, although the colostomy has provided some relief, eat whites.....rice, anything starchy and no whole grains, that sort of stuff, Eating a couple of marshmellows in the mornng seemed to " slow" me up" a bit and I would chew benefiber alot, anythingthat is known as INSOLUABLE FIBER seemed to bind me, and slow the runny stools. I tried to take immodium only if I had to, other than that when I knew I had to be somewhere, or was travelling, I just quit eating, which was not a good thing either....I was starting to take an anti-depressant about 2 weeks befoe the colostomy and that seemed to help too. Actually ladies, my life has improved with the colostomy...I can eat, shop, go to meetings, work and not head to bathroom 999 times.....
I plan on talking to a dietician in the future to see what he or she has to say about my diet, I did speak to one at CLE and she agreed with the insoluable fiber tactic....When you are ready to respond to the letter, do so in the most mature, matter of fact and adult way to show that you are a better person then they want to think. But...try not to look back and do not let the past mistakes chew on you, that also will have a huge impact on the bowels...I found that when I let the mom in law get to me, even something from long ago, I got worse.....so as my daughter says..letitgo...one word she says !!! It's hard though.
We are all here to support one another so don't despair, just one more day in our journey...
flower
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Hi Everyone
I'm on (a much-needed) vacation, so I've not been checking the site. It's been fabulous to get away, but the fistula unfortunately follows me everywhere, as you all know.
Flower - I saw your post about the estrogen cream. My doctor suggested the same, since I was still breastfeeding when I had my surgery. I did the cream leading up to the sphincteroplasty/repair, and continued it since we realized the fistula was still open. I have no idea if the cream has helped. My daughter has completely weaned herself as of this week, so I'm not sure how much longer I'll keep up the cream. Probably just until the tube is empty, and hopefully will have my period soon enough to let me know that my hormones are back where they should be.
That said, the fistula appears to be shrinking. When I first noticed it again post-op, there were small chunks of poo coming through. I took and antibiotic immediately, and think that stopped any infection that was causing the fistula to reopen. The hole has since gotten smaller (I think), and there is only a little fluid discharge coming through now, (four months post-op) and no gas coming through. Leading up to my vacation, I had over a week without anything coming through, which filled me with the dreaded hopefulness that we've all felt - wanting to be hopeful, but afraid to be hopeful. A few days ago (very) small pieces of tomato and olive skin came through, sending me into a depressed spiral where I laid in bed all day. It's so frustrating! I've been so guarded about being hopeful it will go away on its own, but it was such a let-down to see stuff coming through again. Arrrgh! Penny, when yours was healing, did you have some good days and some bad while it closed up? I think you had your ostomy then, so may not be able to advise. Anyone else? I like to think that it's closing and opening as the tissue is healing itself, but obviously this is more wishful thinking than anything scientific.
All for now. The baby is sleeping, and I'm going to get started on the day. We were smart and are vacationing with my parents, which means two extra sets of hands and a little more freedom for my husband and me. Not that we're able to take much advantage of "alone time", but what can you do? Someday again, hopefully!
Hang in there, everyone! Bea and B - I've been thinking about your both! Keep us posted!!! Jess - welcome back!
All the best,
Rlwmom
I'm on (a much-needed) vacation, so I've not been checking the site. It's been fabulous to get away, but the fistula unfortunately follows me everywhere, as you all know.
Flower - I saw your post about the estrogen cream. My doctor suggested the same, since I was still breastfeeding when I had my surgery. I did the cream leading up to the sphincteroplasty/repair, and continued it since we realized the fistula was still open. I have no idea if the cream has helped. My daughter has completely weaned herself as of this week, so I'm not sure how much longer I'll keep up the cream. Probably just until the tube is empty, and hopefully will have my period soon enough to let me know that my hormones are back where they should be.
That said, the fistula appears to be shrinking. When I first noticed it again post-op, there were small chunks of poo coming through. I took and antibiotic immediately, and think that stopped any infection that was causing the fistula to reopen. The hole has since gotten smaller (I think), and there is only a little fluid discharge coming through now, (four months post-op) and no gas coming through. Leading up to my vacation, I had over a week without anything coming through, which filled me with the dreaded hopefulness that we've all felt - wanting to be hopeful, but afraid to be hopeful. A few days ago (very) small pieces of tomato and olive skin came through, sending me into a depressed spiral where I laid in bed all day. It's so frustrating! I've been so guarded about being hopeful it will go away on its own, but it was such a let-down to see stuff coming through again. Arrrgh! Penny, when yours was healing, did you have some good days and some bad while it closed up? I think you had your ostomy then, so may not be able to advise. Anyone else? I like to think that it's closing and opening as the tissue is healing itself, but obviously this is more wishful thinking than anything scientific.
All for now. The baby is sleeping, and I'm going to get started on the day. We were smart and are vacationing with my parents, which means two extra sets of hands and a little more freedom for my husband and me. Not that we're able to take much advantage of "alone time", but what can you do? Someday again, hopefully!
Hang in there, everyone! Bea and B - I've been thinking about your both! Keep us posted!!! Jess - welcome back!
All the best,
Rlwmom
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Oh, and Penny - I'm completely with Flower....The fistula is most certainly NOT your fault. How could it be?!? And how unprofessional of your doctor to make such a claim! Definitely respond when you feel up to it. The medical board should be made aware of such behavior!
Hang in there,
RLWmom
Hang in there,
RLWmom
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Hey Ladies,
Just wanted to drop by and say hello...
Penny-hope you are well. I am good, been having some issues with keeping my digestive system from going bonkers-but all in all good, the fistula at this point is very tiny...so I am ok-no accidents or major issues. Hope you are well...
Bea-how are you????
Ladies. be good. There is hope... B
Just wanted to drop by and say hello...
Penny-hope you are well. I am good, been having some issues with keeping my digestive system from going bonkers-but all in all good, the fistula at this point is very tiny...so I am ok-no accidents or major issues. Hope you are well...
Bea-how are you????
Ladies. be good. There is hope... B
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Hello All,
Hope everyone is doing okay.
It's is good to hear from you, Bee. Glad things are going well. I am just getting over the flu. Not sure if I'm going to work tomorrow or not. I still have a lot of coughing but my overall achyness has gone. My issues were nil because I wasn't eating but I can't rely on that as a solution! I'm finding a return to post surgery white diet is helpful. My BRAT diet is my new Jenny Craig!
Thank you for your encouragement flower and RLW mom. I hope to get back to that letter sometime soon. I think I"ll ask my sister to help get me through it. She's been by my side through this whole thing. And you guys, too, of course, have really helped.
Hang in and know we're here wishing the best for you all soon,
Penny
Hope everyone is doing okay.
It's is good to hear from you, Bee. Glad things are going well. I am just getting over the flu. Not sure if I'm going to work tomorrow or not. I still have a lot of coughing but my overall achyness has gone. My issues were nil because I wasn't eating but I can't rely on that as a solution! I'm finding a return to post surgery white diet is helpful. My BRAT diet is my new Jenny Craig!
Thank you for your encouragement flower and RLW mom. I hope to get back to that letter sometime soon. I think I"ll ask my sister to help get me through it. She's been by my side through this whole thing. And you guys, too, of course, have really helped.
Hang in and know we're here wishing the best for you all soon,
Penny
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Hi everyone,
I am new here and am so glad to have found this forum. I am 7 weeks postpartum and have just started feeling some symptoms of a fistula. I feel a bit of gas passing from my rectum to my vaginal area, which scares me to death. Does this mean it'll just get worse over time? It just started happening this weekend and I am so frightened. I am going to call my OBGYN tomorrow and try to get in to see him as soon as possible. Is it too early to run tests on me? Is it possible that it will heal up or go away? Thank you for your help and time!
I am new here and am so glad to have found this forum. I am 7 weeks postpartum and have just started feeling some symptoms of a fistula. I feel a bit of gas passing from my rectum to my vaginal area, which scares me to death. Does this mean it'll just get worse over time? It just started happening this weekend and I am so frightened. I am going to call my OBGYN tomorrow and try to get in to see him as soon as possible. Is it too early to run tests on me? Is it possible that it will heal up or go away? Thank you for your help and time!
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Hello Ladies:
How is everyone doing? I am okay! It has been 12 weeks since my surgery in July. I have only passed stool once since the beginning of August and that was due to diarhea. At my last doctor's visit, 2 weeks ago, we discussed doing a transvaginal surgery. I don't go back to see the CRS until December 1. Then we'll decide if we want to do surgery because it will be close to 6 months post op. I just don't know what to do. It is so discouraging because I have already had a failed repair. Fortunately, mine doesn't seem to be bigger. When the doctor examined me 2 weeks ago, he couldn't find the fistula. I was very uncomfortable when he examined me so I think that was mostly why. He didn't want to keep looking. UGH!
I wonder if I should just live with this, or take another chance. Beegirl- I know you seem to be content with a small fistula. Does your doctor recommend that you keep it that way, or try for another repair? I don't blame you for not wanting to have surgery again considering all that you have been through.
I guess I will just be playing the waiting game for now. I have wondered if I should go see a urogynocologist. Any thoughts?? I go see my regular Gyn in 2 weeks so I am going to discuss everything with him as well.
Bea- How are you?
CJ
How is everyone doing? I am okay! It has been 12 weeks since my surgery in July. I have only passed stool once since the beginning of August and that was due to diarhea. At my last doctor's visit, 2 weeks ago, we discussed doing a transvaginal surgery. I don't go back to see the CRS until December 1. Then we'll decide if we want to do surgery because it will be close to 6 months post op. I just don't know what to do. It is so discouraging because I have already had a failed repair. Fortunately, mine doesn't seem to be bigger. When the doctor examined me 2 weeks ago, he couldn't find the fistula. I was very uncomfortable when he examined me so I think that was mostly why. He didn't want to keep looking. UGH!
I wonder if I should just live with this, or take another chance. Beegirl- I know you seem to be content with a small fistula. Does your doctor recommend that you keep it that way, or try for another repair? I don't blame you for not wanting to have surgery again considering all that you have been through.
I guess I will just be playing the waiting game for now. I have wondered if I should go see a urogynocologist. Any thoughts?? I go see my regular Gyn in 2 weeks so I am going to discuss everything with him as well.
Bea- How are you?
CJ
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hi,,im not sure im posting right,i just pressed reply. i have a long story to tell so kinda just want to post this to make sure im doing it right
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Guest and Michellemar - welcome. Sorry you had to find us. Guest, I don't think it's too early for testing, but I'm not sure. Definitely call your doctor.
Question for the veterens: I finished breastfeeding last week, and expect that I'll get my period again one of these days. When you have your period with a fistula, will blood exit through the fistula into the rectum? I feel like an id**t asking this, but most of this situation has made me feel like an id**t. I just want to be prepared. Thoughts?
Rlwmom
Question for the veterens: I finished breastfeeding last week, and expect that I'll get my period again one of these days. When you have your period with a fistula, will blood exit through the fistula into the rectum? I feel like an id**t asking this, but most of this situation has made me feel like an id**t. I just want to be prepared. Thoughts?
Rlwmom
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RLWmom,
I have never had blood from my period pass through my fistula. I find it odd because stool can if I have diarrhea. I am wondering if it has something to do with the location of my cervix. I always forget to ask the doctor why I don't have blood from my period go through my rectum. I wonder if my cervix is past the fistula??? I don't know where my fistula is and honestly, I have been wondering if I have a bit of a prolapsed cervix... I am going to the gyn in 2 weeks and will find out.
CJ
I have never had blood from my period pass through my fistula. I find it odd because stool can if I have diarrhea. I am wondering if it has something to do with the location of my cervix. I always forget to ask the doctor why I don't have blood from my period go through my rectum. I wonder if my cervix is past the fistula??? I don't know where my fistula is and honestly, I have been wondering if I have a bit of a prolapsed cervix... I am going to the gyn in 2 weeks and will find out.
CJ
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