Hi there, I wanted to run something by you and see what you think. I have stage 4 endometriosis, have had complete hysterectomy for it. It was only diagnosed because of my frequent urination, and they thought the frequent urination was from the bilateral endometriomas pushing on my bladder. Well after I had my ovaries removed my urinary frequency never went away, felt the same actually. My gyn couldn't figure it out so he sent me to a urologist who diagnosed me with overactive bladder syndrome, even though I don't have leaks at all. I have been on vesicare since then. My urinary frequency went down. When my gyn upped my dose of estrogen, my urinary frequency got worse. When I started cutting back on my estrogen, my bladder urgency got soooo much better. Right now I am almost weaned off the estrogen and I have NO bladder symptoms anymore. I am an RN and I have done a lot of research on this, and I have found nothing related, but.. my gyn said endo was still everywhere inside of me. I am thinking my endo was growing on the obstrussor muscle of the bladder making me feel the need to urinate, and when I lowered the dose of estrogen, it died off and gave me relief. Does this make any sense to you and have you ever heard of it happening? Thanks so much.
It sounde like your symproms are those of overactive bladder. Overactive bladder is a sensation of persistant urinary urgency, and feeling to urinate often. Sometimes this may be related to endometriosis, but if your ovaries have been removed, you should not be having endometriosis symptoms anymore. Bladder symptoms sometimes go along with pelvic pain and painful intercourse. If you have these symptoms, and your workup is otherwise negative, you should consider an evaluation by a pelvic floor physical therapist, who may be able to diagnose pelvic floor trigger points, which can also cause your symptoms. If you have painful pelvic floor trigger points, the physical therapist may be able to correct them, and this can sometimes cause your bladder symptoms to go away as well.
I also had stage 4 endo but was not given estrogen due to the fact it makes endo grow. So it is possible that the endo was growing and formed again on the bladder, and then once you stopped it died off and you had some relief from your symtoms.
Thanks for responding, my question has been here (original one ) since august!!!YES, that is exactly what I think happened. Amazing what endo can do to us! Are you having any problems with your endo since your surgery? I am now off estrogen, but I am still taking progesterone because my doctor said since my body makes some estrogen on its own without ovaries that the endo can still grow some so I need the progesterone to balance it out and make sure it doesnt become cancerous. There is so much info out now about endo becoming cancerous. ITs scary. Shannon
I haven't had any problems since my surgery. I'm really not sure how much is left, the surgeon spent a lot of time removing as much as she could. I hope what was left has died off. I wasn't told to do anything but return each year for my pap smear. Are there ways to monitor endo after surgery?
well if you were having endo symptoms before your surgery and now you arn't then hopefully yours has died off. I know mine hasn't because when I miss a dose of progesterone I get bladder symptoms again. It is still there, but hopefully it will die off. It is supposed to die off but what I hear from others who develop cancer from it is that it doesn't all die off. It is hard to die off because it makes implants in other tissues. Nope there is no way to monitor it, except unless they do another surgery, which some day I might request to have a laporoscopy (where they do a small incision) to check. When did you havev your surgery?
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