Desperate, want to see the Mayo Clinic, but skeptical

Posted by scornwell @scornwell, Dec 25, 2023

I have a longstanding issue (about 3 years) of pelvic pain which has received no help from two trial of PT, some lifestyle changes (I could do better there, but I have to be extremely careful with what I add in so that it doesn't make the pain worse, and I only have so many hours in the day and other problems I have to deal with). This pain has been debilitating in my life.

My dad keeps pushing for me to go to the Mayo Clinic based on a documentary he saw. He imagines that I'm going to stay up there in a hotel or something (Rochester is about 5 hours northwest of me) for like a week or two, and there's going to be a team of doctors intensely scrutinizing what could be going on and how to fix it.

I doubt it. I think this may be the case for patients with rare or complicated life-threatening diseases, but they aren't going to do it for me.

For years, my main hospital for most of my issues (including primary care) has been Johns Hopkins. There are no teams. The refer you to one specialist (urologist in my case), who checks 2 or 3 things, and then sends you on your way to PT. If that doesn't work, they don't have much for you.

In my last visit to my first Urologist at Hopkins, I convinced her to refer me for pudendal injections. The injection referrals never showed up in my chart, and she totally ghosted me after that (she was very responsive before, and I thought I liked her). It took over a month of calls to their urology clinic, and escalating it up to the proper administrator before she finally put the referrals in. I got the injections and did the PT, and they didn't help. The PT made it worse. She continued to ghost me and it took another month of calls and escalation to get a transfer of care to a different urologist.

I saw him, and he didn't want to do anything except send me to a different PT place. He wasn't interested at all in continuing to figure out what was going on and what we could do that was truly different. I asked if there could be imaging done like an MRI to see if they could tell what was going on. He said to me "do you want an MRI? We can do that". He clearly had no hope or interest in what the results would be. He also didn't really listen to me well, and repeating back to me information which was the opposite of what I had just told him. I had to clarify many times, but he didn't care. I think most of the doctors there are either experts in a very narrow area, dead-enders who are decent but not really experts in getting to root causes, and then of course students and fellows who don't give a crap about anything except finishing their fellowship or residency.

I expect the same of the Mayo clinic, but I am getting desperate. I have moved semi-temporarily, and saw a local urologist and did PT again. It was different and gave me some helpful tips, but ultimately was unsuccessful. I asked about the potential for trigger point injections, but the PT didn't really have any answers, just bogus information. I'm doing dry-needling right now, and want to do trigger point injections, but I have no idea how to even find someone semi-local who does it for this very specific area.

Can somebody tell if the Mayo Clinic is different from what I've experienced?

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@scornwell

Hello. How do I self-refer? Also, do I need to choose a specialty, or can that be determined for me based on information I submit. As I mentioned above, my diagnoses for now I believe would be "Pelvic Floor Dysfunction" probably, or if I go with my most recent PT, they used the ICD code "R10.2 Pelvic and perineal pain". I also have pain that radiates down my leg from the perineal area and goes all the way into my big toe... so I wonder if the problem is possibly more general than that. Spinal, some other musculoskeletal or neurological? I don't know, which is why I'm unsure if I should go straight to Urology again at Mayo or not.

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@scornwell
I have been going to Mayo Jacksonville since 2006. When I came there in 2006 there was no hospital yet and the Davis building was the main building with very few other buildings. Since then a major hospital, dozens of other buildings.

I was extremely happy with Mayo Jacksonville and experience what that call Team Approach. If you are seeing a specialist they will concur with other specialist as many diseases and treatments overlap each other. You will get a thorough evaluations, treatments, and options.

I just went there today do have a ECG and see my Electrophsioloigst PA. She stated she will discuss her finding with Electrophysiologist to see is he concurs and will let me know. Then asked about when I see the heart failure specialist as she is sending the ECG and her office visit results to him also. This is just a mention of the team approach.

I know forum is for prostrate cancer but wanted to pass on that give Mayo a chance it is not like other providers you are not a number. I recenlty went to a orthopedic specialist after a CT on spine. It came came with all these ailments. But my orthopedic specialist said to me, "we do not treat xrays we treat patients." You are not a number at Mayo Clinic your a patient and remember Mayo's motto, "The needs of the patient come first."

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