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Does anyone have female intrinsic sphincter deficiency?
Hello. I am a 67 yo female. I have been diagnosed with severe intrinsic sphincter deficiency as I Jan 27.
Last fall. I had had stress incontinence when I would walk. So my urologist recommended and performed a retropubic sling surgery for me on December 2025. I had leaking and a UTI afterwards. He thought
I had overflow incontinence and recommended sling revision which he did by loosening the sling in another surgery, by stretching it in the area of the urethra. Since then I have had problems
leaking. I actually leak all day long and never really feel the need to void. He did a uroflometer test and a cystoscope and does not see any physical problem. He is perplexed and is referring me for
A second opinion. He said I may respond well to Bulkimed, but I am afraid of more side effects and agreed to get a second opinion.
Meanwhile I need to change pads on the hour and feel deflated. Worri d about another UTI from wetness.
So, I was wondering if there is anyone else experiencing similar issues.
Thank you so Much for Any support that you Can give me. Dreams
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I believe I have this issue as well! I am 69. My history is complex. First sling procedure done 15 years ago. It worked well for 10 years and then leaking started again. Botox tried, I blacked out in the room after the procedure and they called “code blue”! That didn’t work. Then Bulkamid came on the scene. We tried that, I ended up with an obstruction and in the emergency room 6 months after the injection when I could not urinate. Catheter and surgery to fix. That caused complete incontinence! 6 months later, a second sling, using my own tissue vs mesh. I, like you, leak all day. Never have an urge to pee. Subsequently I don’t drink my fluid.
I am thinking about coming up to Mayo for second opinion. Have heard about artificial sphincter surgery that is now being done for women (for many years, only for men).
I don’t know if I might be a candidate, but am at my wits end with this.
I don’t know if they still do this, but at Mayo, they used to inject with something (some type of beads or something like that) that blocked leakage. I found it worked for a great length of time, but then had to be redone; and, so, I had it done multiple times over the course of a decade or more. But, then, I stopped when Corvid hit and, at the same time, my Internist at Mayo went into semi retirement and I stopped traveling to Mayo.
Thank you for sharing your experience. My doctor said he could try to use a bulking agent near the urethra which might help. It is called Bulkimed. There can be some complications from it. He said it often needs repeating after several months. How are you doing since not having it for a few years? (. I asked him to refer me to Mayo in Rochester for a second opinion.)
@vickij1956 hello Vicki. I am so sorry to hear of your problems with incontinence. Seems like you have more than enough complications from the interventions, but I know how this problem has such a profound impact on our well being. I am praying for you and hoping you can get some help. I sure appreciate having someone to talk to. Thank you! 🙏
I just asked my provider to refer me to Mayo in Rochester today, as I am
Unable to see a specialist in our area until August.
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1 Reaction@fabia01 I have tried botox (had a reaction to it, so never again) and then bulkamid which caused a blockage and subsequent emergency surgery. I'm not sure if that is similar? My urologist will not retry either of those methods for me. Which I agree with due to the complications.
@dreams
I’m not doing as well as I was when I was getting the treatments. But, it is what it is and I've learned to live with it.