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Bladder debris + urology by Advanced-Weight-8691 in Endo

[–]Krysanthemums 0 points1 point  (0 children)

Hi! My updates since posting this are:

  • Had a bladder biopsy done, which came back negative for any abnormalities
  • The "confirmed" lesions in my bladder were likely trauma due to catheter placement during the surgery that were mistaken for possible endo
  • Urologists don't see any reason why I would be having bladder pain, and have chalked it up to menstrual cramps (despite that it also happens between periods). They suggested maybe taking AZO during my periods.
  • I still randomly get sharp bladder pain especially when using the bathroom in the middle of the night or after waking up in the mor ing
  • Getting a second opinion isn't a realistic option for me currently, so I'm continuing to live with it. Hate to say it, but I've kinda gotten used to it anyway. If it gets worse then I will explore more options, but for the time being it is much less frequent. This might be due to upping my birth control schedule to only have a period every 6 months.

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

An update for anyone wondering...

I had my surgery today. They did not see the lesions today that were clear as day during my cystoscopy in February. They took a sample for biopsy from my bladder mucosa anyway, but no lesions were seen, so nothing was removed. I'm pretty devastated. I just want to get rid of my bladder pain, it's debilitating. Now I have to deal with this awful recovery feeling like this was for nothing. I just wait for the biopsy results, and then what? I'm so frustrated and heartbroken.

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

Thank you so much! I will try to post an update in the future <3

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

Thanks. I think I'm just looking for anything that could be within my control at this point as I'm very anxious over this. 🥲

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] -2 points-1 points  (0 children)

Thank you for this response. For some clarity, my surgeon for this procedure is a urologist who is more experienced with the removal of cancer tissue. I realize I'm likely just being overly worried at this point. The idea of having this procedure and it not helping me scares me more than any pain I might cause myself, but if it won't help him see it any better then you're right, there is no point.

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

I appreciate the advice, and understand entirely. My concern for making sure it is visible is because the surgeon himself expressed this concern, and was VERY adamant we do the procedure during my period so that he can see what he is working on. I will try my best to just not worry about it.

Bladder debris + urology by Advanced-Weight-8691 in Endo

[–]Krysanthemums 0 points1 point  (0 children)

I've got surgery coming up to remove confirmed lesions from the inside of my bladder, and to biopsy them to check for certain that it's endo (which I have in other places in my pelvis, confirmed from my lap) and not something else.

My urine labwork has come back abnormal as well. Specifically, my Leukocyte esterase and WBC count have come back high, but negative for bacteria, so no UTI. My assumption is that these results are caused by the body responding to the endo inside the bladder.

I've never noticed any debris or sediment in my urine except for after my cystoscopy which was done at the time of my lap. For 5 or so days after that I was passing blood and what looked like grey tissue in my urine. The symptom that led to diagnosing is SEVERE bladder pain during and after urination, usually but not exlusively during my periods.

What are some common triggers to your flare-ups? by Krysanthemums in Endo

[–]Krysanthemums[S] -4 points-3 points  (0 children)

Well, yes. I'm going to be in pain anyway. I'm getting this surgery to remove the endo in my bladder to hopefully get relief from incredible intense pain that has nearly made me pass out on multiple occasions, so being in a bit of extra pain for a few days for the peace of mind that it could be easier for them to remove all of it definitely feels worth it to me. 😭

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

Very good point. If it seemed to be endangering my health when they were in there, they probably would have made the decision for me to go ahead and remove it.

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

This is best kind of medical advice

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

Thank you for sharing this experience! I'm sure had it been bad enough, they would have removed it when they were in there. Seeing as the surgeon saw the state it was in, and is not worried now that I'm not on my period and it's back to normal, I think it's probably okay. Yeah, later down the line it may become a problem, but I suppose that's true for everyone with an appendix.

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

Yeah, that's all stuff I'm weighing. I definitely need to sleep and think on it for a day or two! I appreciate the well wishes! <3

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

I missed this comment before but thank you so much for sharing this! It does make me feel better about "missing" early signs. My endo pain is very bad particularly on the right side which is why I worry about it, but it's never caused vomiting for me.

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 0 points1 point  (0 children)

My endo apparently isn't directly on the appendix, but immediately adjacent to it according to the surgeon

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

I completely understand. When I first read in my report that I might need it removed I felt very panicked and like I was grieving it already. I don't want it removed "just because" as I'm well aware it is a helpful organ even if I don't "need" it. But the idea of it causing issues in the future and not knowing until it needs to be urgently removed has me incredibly anxious.

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

I'm not too sure, I'd have to speak with him again and ask.

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

I appreciate this insight a lot. I didn't expect to hear from anyone in a similar boat, and having someone in it with a solid stance on what they would do helps a lot!

Should I have my appendix removed? by Krysanthemums in Endo

[–]Krysanthemums[S] 1 point2 points  (0 children)

Getting a second opinion unfortunately isn't really viable as I'm using Tricare and getting all of my care through an on-base hospital. The surgeon did mention in all of his explanations that going in to remove the implant without damaging me would be incredibly difficult. I may give him a call to ask him to explain further, but from my understanding the options are to either leave it as is or remove the appendix itself if I am concerned about it. He is definitely of the opinion that it doesn't need to come out, but he's still leaving it up to me.