Desperate, want to see the Mayo Clinic, but skeptical

Good morning, @scornwell and welcome to Mayo Connect. I can feel your frustration and skeptism from your previous medical experiences. When you have pain such as yours, with no answer for several years after various attempts, it gets to the point where you tend to feel all hope is lost.

Your dad is right…Mayo is a place of hope! The doctors do indeed work collaboratively to find answers. I’ve been a patient at Mayo Rochester and “mayo-naised”, my word for the amazing blender of medical miracles!
My team consisted of specialists from hematology, stem cell transplant, neurology, hepatology, internal medicine, just to name a few! Yes, there were more on my team. It was amazing to see all of these doctors walk into my room on a daily basis. You’re not just a patient number there. You are treated with respect and the doctors and staff actually take the time to listen.

When you schedule with Mayo, they try to accommodate you with getting appointments all booked within a time span to minimize excess travel. There are a ton of hotels and other lodging very near the clinic if you’re going to Rochester. For my medical adventure I actually lived in a hotel near the clinic for 4 months. Most people come for just a few days.

If you decide to request an appointment and need further information about lodging and ‘what happens next’. Don’t hestitate to pop back in and ask us questions. The clinic is devoted to helping patients and the buildings are easy to navigate.

But bottom line is, yes, take a chance and go to Mayo. It is unlike any medical experince you’ve ever had. Here is a link to get you started. http://mayocl.in/1mtmR63 This takes you to Mayo’s home page where you can select the campus of choice. After that, it’s as simple as a phone call.

After all you’ve been through, you have nothing to lose but everything to gain. Will you give it a try?

Welcome, @scornwell. The Mayo Clinic model of care is an integrated medical practice, where the center of everything is patient and their needs. When you request an appointment at Mayo Clinic (you can self refer), you will first visit with a physician and team in the department most relevant to your main concern. That physician becomes your main advocate, so to speak, and orders tests, appointments, etc as required with a team of multi-disciplinary experts, different specialties, as required by your diagnosis or investigation of a diagnosis.

You may wish to read the patient experiences shared in these related discussions:

- Evaluating Care Models at Top Hospitals to Fit an Individual Patient
https://connect.mayoclinic.org/discussion/evaluating-care-models-at-top-hospital-to-fit-an-individual-patient/
- Need Patients' Experience with Mayo Clinic. Is it worth it?
https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/
Do you have a diagnosis? Do you want to know more about Mayo Clinic Urology? Or are you thinking you need to start with a different department?

Hello @scornwell, I would like to add my welcome Connect along with @colleenyoung, @loribmt and others. I'm sorry to hear you haven't had any success finding help for the chronic pelvic pain. I do think Mayo Clinic Rochester would be an excellent choice for seeking help even though I'm a little biased. I've had several great experiences with their team approach to diagnosing and treating different conditions from small fiber peripheral neuropathy, lymphedema swelling in my legs, sleep apnea, and just a few months ago blood clots in the leg and one in the lungs. They all started with my primary care doc at a local family clinic and then referrals to a specialist at Mayo where I also saw different doctors when it was needed. Best example of the team work discipline used for me was when I had the swelling in my legs and was referred to a cardiologist at Rochester Mayo finally diagnosed with lymphedema. While he was scheduling tests during the examination he asked me if I snored a lot at night. When I responded my wife says I do, he set up an additional appointment with sleep medicine for additional testing and an overnight sleep study where I was diagnosed with obstructive sleep apnea. I'm sure there are many other members that can share their Mayo experience including one of my favorite Mayo patient stories from @jenniferhunter here - https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/.

@scornwell, I have never heard this about John Hopkins but have never gone there.

I have been a patient of Mayo Jacksonville since 2006. When I first went there there was no hospital or any of the spcial buildings and functions they have now. I found they are team oriented. My doctors and specialist all worked together. And what one wants to do he/she checks with the other specialist to make sure they concur with treatments and not contradict what they are treating.

I think you are going to find Mayo Clinic outstanding and team oriented.

I've been told "Pelvic Floor Dysfunction" probably? My most recent PT used the ICD code "R10.2 Pelvic and perineal pain". I have pain in and around my genitals (sorry to be graphic). Also it goes down my inner thigh, and seems to have some effect on my foot (not much pain with the foot, just a cold ache and foot cramping). My PT gave a very detailed intake which outlines a lot of tightness in my pelvic floor an elsewhere. I don't know if I need to see Urology, I really don't know if another Department would be more appropriate or not.

edit: oh yes, "Chronic Pelvic Pain" has been thrown out there as well in one of my visits

This has just my experience and interpretation. They just want to bounce you around and each specialist only has a very narrow lens that they look through, so nobody really can put together the whole picture. I saw the Chief of Pain Medicine there, and he was more interested in telling me about stuff he has published than actually creating a plan for me. He just ended up saying "you could try this, or this I guess", and it was up to me to find a clinic who would do the things he suggested. That was it. There's is some variability. I've had some luck with one or two of their orthopedists actually trying to do something, and an occasional resident PCP who cares enough to actually try to look.

Learning about Mayo Clinic Urology may be a start.

@scornwell Hello and welcome. John kindly shared my Mayo Clinic patient story about my spine surgery. Honestly, I did not know medicine could be as good as it is at Mayo. The other mentors in this discussion are all here because of the excellence of care that made a difference in their lives. I wasted 2 years chasing surgeons who didn't understand my case and wouldn't help me. We are all here volunteering and helping others because we know what is possible.

I have a terrific local physical therapist (not at Mayo) who has told me that pundental nerve issues can be tricky. I wanted to share with you this website that has several articles describing this and similar problems. It can be related to lumbar spine and pelvic alignment issues such as Lumbar Plexus Compression Syndrome. You might want to read these articles and perhaps this will give you a base for discussions with your providers.
https://mskneurology.com/category/low-back-pelvis/
I did come to Mayo after I found a diagnosis in medical literature that local surgeons completely missed, but I did find it because I was reading medical literature of a Mayo surgeon, and I knew I had found a surgeon who understood a case like mine. It turned out he was also kind, easy to talk to and he put me completely at ease, something I hadn't experienced with other surgeons. He really listened, and also consulted with other specialists about the other conditions I had, and he even received a call with results of testing from one of those other specialists while I was at my consultation! I didn't know that could happen with all my doctors on the same page at the same time, and figuring out everything in a couple of days.

I have on occasion felt a bit of a twinge of pundental nerve pain, but getting my back and pelvis aligned again resolves it. I also work on my core strength by riding my horse. My big lesson was learning to advocate for myself and learning everything I could about my condition so I could know I was on the right track and finding the right doctors of course. Coming to Mayo changed my life.

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.

@scronwell, click this link http://mayocl.in/1mtmR63 to find out more about how to submit a request for self-referral. You can submit through the online form or simply call the location of your choice.

You will be asked about your primary concern. You can suggest a specialty, but do not need to if you are unsure.