I was being misdiagnosed. I now have bladder cancer. Stuff happens. One more thing to deal with...I did not even have a history of UTI's. A new PCP not knowing my history sent me to infectious diseases. Was it because I am an American female??? Was then suggested there I see a Urologist. Stuff happens. See what happens now. I may lose my bladder yet. Can't even think about thus. New doctor must have presumed I was a slut because I am American? I will not say more lest I sound racist, etc. I am not and never have been. Struggling with extreme depression at this point for feeling I have been stereotyped even more.
@parus I certainly understand what your going thru especially during this time of uncertainty. Have the doctors told you specifically that you have bladder cancer and need to have your bladder removed? My 95 yr old mother was also just diagnosed with bladder cancer and they treated her with radiation to reduce the tumor. Everything depends on the type of cancer and where it is located. Try to get an appointment with the urologist and ask all the questions that are bothering you. The urologist will probably give you options for treatment: chemotherapy, radiation, surgery, or watch and wait, or a combination. Please let us know what you learn! I can always answer other questions- I’m not a doctor, but an oncology nurse. I’ll keep you in my thoughts. Becky
@gingerw I had a biopsy last Tuesday. By Friday I was passing many large blood clots and lots of blood. Kidneys are okay I guess. The doctor sending me to infectious disease is female and the new primary I was referred to when another one left.
I called the office of the Urologist Friday and he told the nurse to have me drink lots of water to keep the clots passing through. It is scary but nothing I can do. It was cauterized-supposedly. Will call again tomorrow since still passing clots and blood. This was supposed to be no big thing and now I trust no one. Why go back and go through another surgery to fix what the doctor screwed up?? He may do even more damage.It is cancer just don't know what kind. I was not passing clots and this much blood prior to biopsy. It must be far worse than they led me to believe.
I'm sorry. I have less and less trust in doctors as time goes on. I have become terrified of them. Trying to once again overcome my fears. It helps to whine. Nothing anyone can do. Just helps to know there is someone out there who cares. See what tomorrow brings. At least I hope so. My temperature is normal. I so abhor being invalidated and know many feel this way too. I am not a doctor. I just know I am feeling very sick. Must be in my head.
@parus You sound confused and angry with so many things happening. One thing I can suggest is that you take their advice and drink lots and lots of water. You really do want to flush out the clots! You are having clots because a biopsy was done and the surgeon can’t put pressure on the site to stop any bleeding. It is expected. And the bleeding will stop! Just drink water! And get lots of rest. Please let us know how your doing. Everyone here cares.
I was being misdiagnosed. I now have bladder cancer. Stuff happens. One more thing to deal with...I did not even have a history of UTI's. A new PCP not knowing my history sent me to infectious diseases. Was it because I am an American female??? Was then suggested there I see a Urologist. Stuff happens. See what happens now. I may lose my bladder yet. Can't even think about thus. New doctor must have presumed I was a slut because I am American? I will not say more lest I sound racist, etc. I am not and never have been. Struggling with extreme depression at this point for feeling I have been stereotyped even more.
@parus- Hi parus- I am so very sorry for all you are going through and can only imagine how you must be feeling. Please know that you have a friend in Canada who is thinking of you and wishing you well!Ainsleigh
Dear Gail, I will be so grateful if you can give me the name of the surgeon that repaired your bladder prolapse. Did you have a mesh repair or without? I am looking for a very good surgeon in US who can do my bladder prolapse. Thank you. Vivi
@veronicat
The surgeon that did my prolapse surgery was Dr. Tomas Antonini at Central Texas Urogynecology in Austin, Texas. He did use mesh because my prolapse was a stage 4 and given the condition of my ligaments he did not believe that just repairing the ligaments would hold and I did not want to have to do it again in a couple of years. I was very afraid of the mesh but he showed it to me and showed me how it compared to the mesh you hear about on TV involving all the lawsuits. One other thing he did was a Urodynamic study which is a test that helps to anticipate if you will be incontinent once the repair is done. That is because when the bladder hangs down as it does in prolapse it makes it difficult to urinate due to gravity (urine can't flow up) and often masks underlying issues with incontinence. He found that I would likely have some incontinence issues and so he did some adjustments to help correct that as well. The surgery I had is called a Sacrocolcopexy with Hysterectomy. It was done with the DaVinci robot and I had a few little spots on my tummy where he went in but you can't really see them now at all. My surgery was Oct. 2017. The reason they do a Hysterectomy along with the prolapse repair is because the uterus is in the way of the area that needs to be addressed during the prolapse repair. The surgery is much cleaner, with less complications, and less time, if it is done this way.
Dr. Antonini was the second Urogynecologist I went to. The first one was very high pressure and when I did not schedule surgery on my first visit, he had his office continue to call me to try to "get me on his surgery schedule". I just did not feel good about the pressure even though he had a good reputation. Dr. Antonini was very patient. His wife is a gynecologist and he shares his office with her. I think he probably gets a woman's perspective on things whether he wants it or not. I found him very kind and comforting. He even let me stay in the hospital two nights because I told him I lived alone which I appreciated. I did come home with a catheter and you keep it for a week, but it was a small price to pay to get things taken care of properly. His office staff had some turnover not long after my surgery, which I think was for the best, because the only even slightly negative issue I had was with a few people on his staff who are now no longer there. I would highly recommend him. Please let me know if you have any additional questions as I know it is a bit of an intimidating process but I am so glad I did it. I suffered way too long with the prolapse.
@veronicat
The surgeon that did my prolapse surgery was Dr. Tomas Antonini at Central Texas Urogynecology in Austin, Texas. He did use mesh because my prolapse was a stage 4 and given the condition of my ligaments he did not believe that just repairing the ligaments would hold and I did not want to have to do it again in a couple of years. I was very afraid of the mesh but he showed it to me and showed me how it compared to the mesh you hear about on TV involving all the lawsuits. One other thing he did was a Urodynamic study which is a test that helps to anticipate if you will be incontinent once the repair is done. That is because when the bladder hangs down as it does in prolapse it makes it difficult to urinate due to gravity (urine can't flow up) and often masks underlying issues with incontinence. He found that I would likely have some incontinence issues and so he did some adjustments to help correct that as well. The surgery I had is called a Sacrocolcopexy with Hysterectomy. It was done with the DaVinci robot and I had a few little spots on my tummy where he went in but you can't really see them now at all. My surgery was Oct. 2017. The reason they do a Hysterectomy along with the prolapse repair is because the uterus is in the way of the area that needs to be addressed during the prolapse repair. The surgery is much cleaner, with less complications, and less time, if it is done this way.
Dr. Antonini was the second Urogynecologist I went to. The first one was very high pressure and when I did not schedule surgery on my first visit, he had his office continue to call me to try to "get me on his surgery schedule". I just did not feel good about the pressure even though he had a good reputation. Dr. Antonini was very patient. His wife is a gynecologist and he shares his office with her. I think he probably gets a woman's perspective on things whether he wants it or not. I found him very kind and comforting. He even let me stay in the hospital two nights because I told him I lived alone which I appreciated. I did come home with a catheter and you keep it for a week, but it was a small price to pay to get things taken care of properly. His office staff had some turnover not long after my surgery, which I think was for the best, because the only even slightly negative issue I had was with a few people on his staff who are now no longer there. I would highly recommend him. Please let me know if you have any additional questions as I know it is a bit of an intimidating process but I am so glad I did it. I suffered way too long with the prolapse.
@veronicat
The surgeon that did my prolapse surgery was Dr. Tomas Antonini at Central Texas Urogynecology in Austin, Texas. He did use mesh because my prolapse was a stage 4 and given the condition of my ligaments he did not believe that just repairing the ligaments would hold and I did not want to have to do it again in a couple of years. I was very afraid of the mesh but he showed it to me and showed me how it compared to the mesh you hear about on TV involving all the lawsuits. One other thing he did was a Urodynamic study which is a test that helps to anticipate if you will be incontinent once the repair is done. That is because when the bladder hangs down as it does in prolapse it makes it difficult to urinate due to gravity (urine can't flow up) and often masks underlying issues with incontinence. He found that I would likely have some incontinence issues and so he did some adjustments to help correct that as well. The surgery I had is called a Sacrocolcopexy with Hysterectomy. It was done with the DaVinci robot and I had a few little spots on my tummy where he went in but you can't really see them now at all. My surgery was Oct. 2017. The reason they do a Hysterectomy along with the prolapse repair is because the uterus is in the way of the area that needs to be addressed during the prolapse repair. The surgery is much cleaner, with less complications, and less time, if it is done this way.
Dr. Antonini was the second Urogynecologist I went to. The first one was very high pressure and when I did not schedule surgery on my first visit, he had his office continue to call me to try to "get me on his surgery schedule". I just did not feel good about the pressure even though he had a good reputation. Dr. Antonini was very patient. His wife is a gynecologist and he shares his office with her. I think he probably gets a woman's perspective on things whether he wants it or not. I found him very kind and comforting. He even let me stay in the hospital two nights because I told him I lived alone which I appreciated. I did come home with a catheter and you keep it for a week, but it was a small price to pay to get things taken care of properly. His office staff had some turnover not long after my surgery, which I think was for the best, because the only even slightly negative issue I had was with a few people on his staff who are now no longer there. I would highly recommend him. Please let me know if you have any additional questions as I know it is a bit of an intimidating process but I am so glad I did it. I suffered way too long with the prolapse.
@mader62
So sorry you keep getting these. I had only had one in my whole life prior to when I started getting them repeatedly a few years back. Doctor said chances are it never really went away with the antibiotics they were giving me. So we tried a couple different ones and it still kept coming back. Finally they put me on a low dose of some antibiotic which I unfortunately do not remember the name of, and I was on it for about 3 months as I recall. Finally it went away and did not come back. I was having blood in my urine as well. Has the doctor used a cystoscope to check out your bladder? This can rule out any serious issues. Sometimes if you do not empty your bladder entirely, this can lead to UTI's. A cystoscopy can tell this and look for other abnormalities as well. My doctor also recommended a probiotic specifically for the urinary tract. I believe it was made by Garden of Life. I took it every day for quite a while. I believe my UTI was aggravated by the fact that I had a prolapsed bladder (where the bladder drops down due to weakness in the ligaments that hold it up). I have had it repaired since. Also, if you are not seeing a urologist, I strongly suggest that you do. Sounds like you need someone with expertise beyond the primary care doctor. I know this can be very annoying and even painful if it goes on for a long time. I hope you can find some relief. Perhaps there are others here who can offer up other suggestions for you. But definitely don't just stick with one antibiotic because it may not work for you and see a urologist for some specialized expertise.
Best to you.
@veronicat
The surgeon that did my prolapse surgery was Dr. Tomas Antonini at Central Texas Urogynecology in Austin, Texas. He did use mesh because my prolapse was a stage 4 and given the condition of my ligaments he did not believe that just repairing the ligaments would hold and I did not want to have to do it again in a couple of years. I was very afraid of the mesh but he showed it to me and showed me how it compared to the mesh you hear about on TV involving all the lawsuits. One other thing he did was a Urodynamic study which is a test that helps to anticipate if you will be incontinent once the repair is done. That is because when the bladder hangs down as it does in prolapse it makes it difficult to urinate due to gravity (urine can't flow up) and often masks underlying issues with incontinence. He found that I would likely have some incontinence issues and so he did some adjustments to help correct that as well. The surgery I had is called a Sacrocolcopexy with Hysterectomy. It was done with the DaVinci robot and I had a few little spots on my tummy where he went in but you can't really see them now at all. My surgery was Oct. 2017. The reason they do a Hysterectomy along with the prolapse repair is because the uterus is in the way of the area that needs to be addressed during the prolapse repair. The surgery is much cleaner, with less complications, and less time, if it is done this way.
Dr. Antonini was the second Urogynecologist I went to. The first one was very high pressure and when I did not schedule surgery on my first visit, he had his office continue to call me to try to "get me on his surgery schedule". I just did not feel good about the pressure even though he had a good reputation. Dr. Antonini was very patient. His wife is a gynecologist and he shares his office with her. I think he probably gets a woman's perspective on things whether he wants it or not. I found him very kind and comforting. He even let me stay in the hospital two nights because I told him I lived alone which I appreciated. I did come home with a catheter and you keep it for a week, but it was a small price to pay to get things taken care of properly. His office staff had some turnover not long after my surgery, which I think was for the best, because the only even slightly negative issue I had was with a few people on his staff who are now no longer there. I would highly recommend him. Please let me know if you have any additional questions as I know it is a bit of an intimidating process but I am so glad I did it. I suffered way too long with the prolapse.
Thank you so much for the useful information, dear Gail.
I am so happy for you, that your surgery was successful.
I am little worried about mesh repair. Have to think about it.
So far you have no pain at all from the mesh?
Can you exercise or walk long distance?
At the moment my prolapse is so bad, I can’t walk more than 300 m. It’s terrible.
How old is Dr. Antonini approximately?
He looks very young from the photos. I am worry if he is got enough experience...
@parus You sound confused and angry with so many things happening. One thing I can suggest is that you take their advice and drink lots and lots of water. You really do want to flush out the clots! You are having clots because a biopsy was done and the surgeon can’t put pressure on the site to stop any bleeding. It is expected. And the bleeding will stop! Just drink water! And get lots of rest. Please let us know how your doing. Everyone here cares.
@becsbuddy Thank you for the input and a bit more explanation. Scary when the bleeding and clots just kept coming. It finally did stop. Now waiting for follow-up appointment and to find out what type of cancer. I was not told that all growths in the bladder are cancer. I am doing better. I always drink water and stay hydrated. Helps to know I have some support here. I have not mentioned the biopsy to anyone. Not one to broadcast personal issues. Trying to get caught up with Mayo. A busy place for sure.
@becsbuddy Thank you for the input and a bit more explanation. Scary when the bleeding and clots just kept coming. It finally did stop. Now waiting for follow-up appointment and to find out what type of cancer. I was not told that all growths in the bladder are cancer. I am doing better. I always drink water and stay hydrated. Helps to know I have some support here. I have not mentioned the biopsy to anyone. Not one to broadcast personal issues. Trying to get caught up with Mayo. A busy place for sure.
So glad to hear from you, @parus. It is good to know that the clotting did stop. Do you have an appointment with an oncologist in the near future? It will be good when you have more information and a plan on how to proceed.
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@parus I certainly understand what your going thru especially during this time of uncertainty. Have the doctors told you specifically that you have bladder cancer and need to have your bladder removed? My 95 yr old mother was also just diagnosed with bladder cancer and they treated her with radiation to reduce the tumor. Everything depends on the type of cancer and where it is located. Try to get an appointment with the urologist and ask all the questions that are bothering you. The urologist will probably give you options for treatment: chemotherapy, radiation, surgery, or watch and wait, or a combination. Please let us know what you learn! I can always answer other questions- I’m not a doctor, but an oncology nurse. I’ll keep you in my thoughts. Becky
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4 Reactions@parus You sound confused and angry with so many things happening. One thing I can suggest is that you take their advice and drink lots and lots of water. You really do want to flush out the clots! You are having clots because a biopsy was done and the surgeon can’t put pressure on the site to stop any bleeding. It is expected. And the bleeding will stop! Just drink water! And get lots of rest. Please let us know how your doing. Everyone here cares.
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5 Reactions@parus- Hi parus- I am so very sorry for all you are going through and can only imagine how you must be feeling. Please know that you have a friend in Canada who is thinking of you and wishing you well!Ainsleigh
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4 Reactions@veronicat
The surgeon that did my prolapse surgery was Dr. Tomas Antonini at Central Texas Urogynecology in Austin, Texas. He did use mesh because my prolapse was a stage 4 and given the condition of my ligaments he did not believe that just repairing the ligaments would hold and I did not want to have to do it again in a couple of years. I was very afraid of the mesh but he showed it to me and showed me how it compared to the mesh you hear about on TV involving all the lawsuits. One other thing he did was a Urodynamic study which is a test that helps to anticipate if you will be incontinent once the repair is done. That is because when the bladder hangs down as it does in prolapse it makes it difficult to urinate due to gravity (urine can't flow up) and often masks underlying issues with incontinence. He found that I would likely have some incontinence issues and so he did some adjustments to help correct that as well. The surgery I had is called a Sacrocolcopexy with Hysterectomy. It was done with the DaVinci robot and I had a few little spots on my tummy where he went in but you can't really see them now at all. My surgery was Oct. 2017. The reason they do a Hysterectomy along with the prolapse repair is because the uterus is in the way of the area that needs to be addressed during the prolapse repair. The surgery is much cleaner, with less complications, and less time, if it is done this way.
Dr. Antonini was the second Urogynecologist I went to. The first one was very high pressure and when I did not schedule surgery on my first visit, he had his office continue to call me to try to "get me on his surgery schedule". I just did not feel good about the pressure even though he had a good reputation. Dr. Antonini was very patient. His wife is a gynecologist and he shares his office with her. I think he probably gets a woman's perspective on things whether he wants it or not. I found him very kind and comforting. He even let me stay in the hospital two nights because I told him I lived alone which I appreciated. I did come home with a catheter and you keep it for a week, but it was a small price to pay to get things taken care of properly. His office staff had some turnover not long after my surgery, which I think was for the best, because the only even slightly negative issue I had was with a few people on his staff who are now no longer there. I would highly recommend him. Please let me know if you have any additional questions as I know it is a bit of an intimidating process but I am so glad I did it. I suffered way too long with the prolapse.
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2 ReactionsVery informative. Many thanks for providing this information.
@baxtersmom I agree with @asegura That really is interesting and informative. It sounds like you had an exceptional surgeon.
JK
What were the symptoms you experienced with a prolapsed bladder? Repeated UTIs only symptom or were there other symptoms?
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1 ReactionThank you so much for the useful information, dear Gail.
I am so happy for you, that your surgery was successful.
I am little worried about mesh repair. Have to think about it.
So far you have no pain at all from the mesh?
Can you exercise or walk long distance?
At the moment my prolapse is so bad, I can’t walk more than 300 m. It’s terrible.
How old is Dr. Antonini approximately?
He looks very young from the photos. I am worry if he is got enough experience...
Kind regards
Vivi
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2 Reactions@becsbuddy Thank you for the input and a bit more explanation. Scary when the bleeding and clots just kept coming. It finally did stop. Now waiting for follow-up appointment and to find out what type of cancer. I was not told that all growths in the bladder are cancer. I am doing better. I always drink water and stay hydrated. Helps to know I have some support here. I have not mentioned the biopsy to anyone. Not one to broadcast personal issues. Trying to get caught up with Mayo. A busy place for sure.
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5 ReactionsSo glad to hear from you, @parus. It is good to know that the clotting did stop. Do you have an appointment with an oncologist in the near future? It will be good when you have more information and a plan on how to proceed.
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