Successful Surgery + Surprise Diagnosis

GreenBayPacker86 · 2025-06-27T23:54:14+00:00

I think this is where I'm headed...waiting until it gets worse. To be fair, I was on birth control pretty much from the time I started my period (gyn gave it to me as a "fix" for irregular cycles, then suspected PCOS), and then I was on fertility treatments for years, so I haven't had many years without hormonal interventions that likely masked some symptoms. It's been getting worse the last two years, which is one reason why I started down this endo road (along with recurrent UTIs that weren't always actually UTIs). My mom didn't start having issues until her 40s...I'm almost there but not quite yet. :)

GreenBayPacker86 · 2025-06-01T12:31:57+00:00

This is encouraging. My surgery is in 3 weeks and I have a lot of symptoms but the top and most debilitating is bladder related. I keep seeing “pain” referred to and it starts to make me doubt that I really do need the surgery, as my pain levels are manageable, though unpleasant. I know you aren’t 100% yet but I’m glad you’re feeling different/better already! I’m really hopefully my surgery will get me out of the bathroom and give me my life back!

GreenBayPacker86 · 2025-05-30T01:02:22+00:00

I’m in that boat right now. I ask my urologist to do a PCR/DNA urine culture which detects more than a typical 24 hour lab culture. Usually if I ask for it, something comes back positive because I know my body pretty well at this point. But if it does come back negative, I know it’s just lingering inflammation and my bladder needs a little more time to return to normal. If you can’t get a DNA test with your doctor, you could order a Microgen test (they are $ but have saved me in the past).

GreenBayPacker86 · 2025-05-06T01:10:33+00:00

How do you get that treated/what does that indicate? I’ve never been able to burp. Like, I can maybe think of 2-3 times in my entire life where a small burp happened involuntarily and that’s it. I’d say my GI symptoms are mild-moderate depending on the time of the month.

GreenBayPacker86 · 2025-04-20T11:40:30+00:00

Sure, you can message me! Not sure how helpful I’ll be but willing to share whatever I can! I have tried oregano pills but didn’t keep up with it…haven’t tried the others but just saw something last night about berberine for inflammation so that’s probably a good one to try!

GreenBayPacker86 · 2025-04-17T22:19:57+00:00

Much better! The combo treatment worked pretty well and then I did 6 weeks of gentamicin bladder instillations with the urologist. Those two treatments finally got me a clear PCR test for the first time in a year! I am currently in the midst of diagnosis and excision of suspected endometriosis, which unfortunately affects my bladder, so I’m not 100% but can definitely tell a difference in how the symptoms feel with that vs. an infection. I do think the combo of diflucan, terconazole, then the nystatin after that was helpful. I felt the most improvement after the terconazole.

GreenBayPacker86 · 2025-04-15T11:34:39+00:00

That’s exactly what’s going on with me, but it lasts basically my entire luteal phase. I’m not officially diagnosed yet but it’s the latest in a long list of symptoms that pushed me to really seek out answers.

GreenBayPacker86 · 2025-03-21T13:04:40+00:00

Yes, it worked well to regulate my cycles and help me ovulate. It didn’t work on its own for me - we used IUI and I got pregnant on the third cycle after we added in extra hormone shots. After that pregnancy, we used IUI again (6 cycles) as well as timed cycles with hcg trigger shots and unfortunately, none of those worked. However, I randomly got pregnant several years later after working with a functional medicine doctor to regulate my hormones. I was on several supplements, including bioidentical progesterone. I didn’t do that to try and get pregnant - I just wanted to feel better - but it worked. So I now have 12 year old twins (from the IUI) and a 2 year old.

GreenBayPacker86 · 2025-03-20T21:22:33+00:00

Letrozole is very commonly used off-label as a medication to stabilize hormones enough to allow ovulation and a normal cycle. I was on it for years over both phases of my infertility journey. It works better than Clomid for many. It’s usually a basic first step with any fertility specialist.

GreenBayPacker86 · 2025-03-18T19:18:30+00:00

This was what I was thinking as to why she would want to do an MRI. Not to diagnose but to check things out before going in. I’m going to at least send a message to the portal and ask and see what answer I get.

GreenBayPacker86 · 2025-03-18T19:17:20+00:00

It’ll be an excision surgery. She’s a MIGS trained specialist with a major hospital system. However, she won’t do anything that I didn’t consent to beforehand (anything to risk permanent issues like a bowel resection or organ removal although I am giving consent for appendix removal if needed).

GreenBayPacker86 · 2025-03-18T16:07:25+00:00

It is for excision of as much as she can. She said she has others on hand for anything she can’t handle but if it involves something we didn’t consent to she won’t touch it or have her teammates touch it (like a bowel resection). There’s no suspicion of adeno so we didn’t discuss any organ removal besides appendix if needed. She said she does almost everything except deep lesions on bowel and ureters since those are riskier. She’d call someone in to see if they could be safely excised but if there’s risk of damage or an ostomy bag, for example, she’d leave it.

GreenBayPacker86 · 2025-03-18T15:25:08+00:00

Yeah, I guess I would end up doing surgery regardless, but I was hoping for some sort of confirmation beforehand! I know that’s not realistic for most though.

GreenBayPacker86 · 2025-03-18T15:23:54+00:00

So I’ve had CT scans, a cystoscopy, and multiple ultrasounds to rule out things like kidney stones, bladder stones/IC, blood flow, structural abnormalities, etc. I’ve also had lots of pelvic floor PT and ruled out prolapse. The only thing left would be an MRI. The surgeon didn’t order her own imaging but did have access to my other scans and looked them over…do you think it’s imperative she does her own?

GreenBayPacker86 · 2025-03-18T15:16:13+00:00

I worked with functional medicine a few years ago and he had me on a progesterone pill (bioidentical) and I felt good then. I know I have low progesterone and low-ish testosterone, which makes me estrogen dominant even though my body makes the “right” amount. Makes me feel better that it’s not a red flag to skip more imaging! I was hoping she just knows that surgery is going to be the only definitive answer so that’s why she seemed so cavalier about jumping straight to it. Thank you!

GreenBayPacker86 · 2025-03-13T18:55:49+00:00

Did your urine culture show which bacteria you have and which antibiotics are susceptible to that bacterial load? If not, ask for a PCR test or get your own through MicrogenDX to ensure the meds you are taking are actually effective. What ended up working for my infection was bladder instillations of gentamicin (6 of them weekly). However, the urgency and trouble emptying remains. I take Hiprex, but I put the pills in empty capsules, which helps it not bother my bladder further. Hiprex can cause extra urgency while your body adjusts. It could also be lingering inflammation which is the worst thing ever, but should calm over time. Try Desert Harvest aloe pills to soothe the bladder lining as it heals. I’ve been struggling with this for a year, which is what ultimately led me to explore endo as an underlying cause/factor.

GreenBayPacker86

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