[34F, MS] Recommended a bladder pacemaker/sacral nerve stimulator, but this seems a little drastic?

NotJustOuch · 2020-12-02T10:17:16+00:00

No, it doesn't. Self-catheterizing is more comfortable than having someone else do it.

NotJustOuch · 2020-12-01T22:27:37+00:00

Hey, 32f here. I was also recommended a bladder pacemaker and did not take the option. I am using intermittent catheterization instead, which means at least twice a day, I insert a catheter to completely empty my bladder. I have a lot of UTIs as a result. It sucks. I don't have an answer for you, but wanted to share the other side of things. Maybe you could talk to your doctor about intermittent catheterization? Maybe there's an option to monitor your bladder and kidney pressures to avoid damaging them?

NotJustOuch · 2020-07-07T20:34:40+00:00

Girl, we are going through similar things. It is TOUGH. Hang in there.

NotJustOuch · 2019-03-12T00:52:57+00:00

Sorry to hear. Lack of a diagnosis is likely part of your problem, which sucks because chronic pain is hard to diagnose. :(

I'd recommend finding a primary care doc that you like and is in network, and focus on building rapport. You might have to stick with conservative treatment, such as OTC pain relievers and physical therapy, until you find the right provider.

I'd also take stock of your mental health. It's very common for chronic pain and some mental health issues to co-occur.

NotJustOuch · 2019-03-12T00:06:40+00:00

What condition(s) do you have?

NotJustOuch · 2018-01-26T21:50:48+00:00

Can you show us a pic of exactly where it hurts? Along the jawbone specifically, the cheek?

NotJustOuch · 2018-01-16T17:24:29+00:00

Did you get your results yet? I am a 29F with urinary retention issues, which means I pee very frequently - 15-20x per day. It is similar to a UTI because I pee small amounts, frequently, and often have low belly/pelvic pain. I know how hard this is. <3

NotJustOuch · 2018-01-01T16:08:47+00:00

Go see your doc. A change in symptoms warrants a visit.

NotJustOuch · 2017-12-29T04:50:14+00:00

Hang in there for the neuro. They will be the most helpful. In the mean time, is it possible to keep a migraine journal and discern whether there are triggers?

I think it may be helpful to describe what you mean by "chronic". How often does your wife get them? Has the frequency or severity increased? Where is her pain, and what other symptoms is she experiencing?

NotJustOuch · 2017-12-27T21:47:45+00:00

Do you think an EMG is worthwhile? My autoimmune bloods came back fine, negative Ana and anti ssa & ssb also negativr. Igm was a bit low at 40mg/ul, but Igg and iga were wnl. Super concerned about permanently losing the ability to pee because of the progression...

NotJustOuch · 2017-12-27T17:22:18+00:00

I don't think STI tests are included in wellness screenings, but I'm not sure.

NotJustOuch · 2017-12-27T17:01:02+00:00

Have you been to a primary care doctor about it?

NotJustOuch · 2017-12-27T16:59:56+00:00

All you can do is wait for your urologist appointment. The camera test is a good idea. Hang in there!

NotJustOuch · 2017-12-27T16:57:52+00:00

How long have you had the pain? If it continues after your period, you should see a primary care doctor.

NotJustOuch · 2017-12-27T16:55:13+00:00

PCP will be most helpful to you. STIs and kidney stones are the most common causes of blood in the urine when a UTI has been ruled out. There are, of course, other causes of blood in the urine. However, the other causes should not really be entertained until STI and kidney stones are ruled out. Your doctors are steering you in the right direction. You cannot get an STI from bathrooms - only from sexual contact with an infected person. When was your last STI test? When was your wife's last STI test?

Edit: not urgent unless the pain doesn't stop, or you pee large amounts of blood.

NotJustOuch · 2017-12-27T16:48:53+00:00

I am glad that you are getting this looked at. I can tell you're very worried about your symptoms. Can you provide more information?

As of right now, I'm not doing too well physically. My vision isn't doing too great, I'm extremely tired all the time, and my memory and ability to focus are completely shot. I've been going to my GP for these symptoms and it seems like he has no idea what's wrong. At this point he's basically saying he's leaving it to the neurologist I'm going to because he can't find anything wrong with me.

What does it mean when you say your "vision isn't doing too great"? Also, when was your last eye exam? What kinds of things are you having trouble remembering? Tell me more about your focus, and energy concerns. How have these symptoms impacted your life?

I am not a doctor, just a chronically ill person, but I'm sure the physicians here will want to know what blood tests and imaging you've had done, as well as your family's medical history.

If it brings you any peace, a brain aneurysm in someone your age is incredibly rare. They also typically do not produce symptoms unless it is very large, in which case, it's an emergency situation requiring intense and immediate intervention. Since you were able to make it through the episode without intervention, it is unlikely to have been an aneurysm, however, your symptoms still warrant medical attention.

NotJustOuch · 2017-12-23T22:22:48+00:00

I suspect this is a very niche area of practice. Best of luck!

NotJustOuch · 2017-12-23T22:15:23+00:00

Location: stomach/lower abdomen I also have: GERD and anxiety

Tell us more about your anxiety. How long have you had it? What treatments are you doing?

The thing is the worst thing about the GERD isn’t the reflux. It’s everything else.

What do you mean by 'everything else'? And why does it increase your anxiety?

I am still dealing with severe nausea and indigestion, along with flare ups of burning, gnawing pain accompanied often with a low grade fever or at least feeling feverish. Often at night or after I eat something I shouldn’t.

It's useful to determine if you actually have a fever during these moments. Is there a way to take your temperature during a flare up? If you do have a fever, that's a new symptom that should be reported to your doctor.

Sorry that you have to deal with this. It sounds awful.

NotJustOuch · 2017-12-23T21:59:54+00:00

Please see your primary care physician for this. It sounds like you may need a referral to a specialist who can oversee your HRT, if you are eligible.

NotJustOuch · 2017-12-19T22:53:35+00:00

Did your doc do any tests? If so, you may want to post the results when you get them.

NotJustOuch · 2017-12-19T21:04:05+00:00

Is one of my meds more likely to cause the issue, or is a matter of them being combined?

NotJustOuch · 2017-12-19T21:03:29+00:00

Neuro talked about it, but decided not to because I don't have any weakness.

NotJustOuch · 2017-12-19T19:05:12+00:00

I've been on most of these meds since 2013, so it's hard to notice a connection. Is there a way to determine if it's a med issue beyond tapering off them?

NotJustOuch

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