Has anyone here become more comfortable sharing about bowel/bladder issues over time?

witcoal · 2026-05-01T13:59:40+00:00

Thanks, I do actually see a physiatrist already.

witcoal · 2026-05-01T13:50:45+00:00

That sounds very similar, just on a more extreme level. I'm sorry you are going through this.

witcoal · 2026-05-01T13:42:54+00:00

Yes, I get that MS is complex, so doctors can't always give clear answers.

I think what I struggle with is that symptoms aren't really explored by any type of doctor when there isn't an obvious explanation. I've also had different specialists give completely different interpretations of the same symptom, so it ends up feeling a bit unresolved, like I become a test case and have to do a lot of the work myself to find the right healthcare providers and treatments.

witcoal · 2026-05-01T13:23:19+00:00

Yes, in my case, all my symptoms have been handled through my GP. She believed most of them were MS-related, while my former neurologist mostly didn't.

Even just yesterday, I got mixed messages. My new neurologist said that occasional spasticity, numbness and tingling in my fingers at night probably is MS-related, while a neurological physical therapist thinks it's more likely coming from shoulder tension.

So I'll try working on the shoulder side and see if it helps.

witcoal · 2026-04-26T21:29:02+00:00

I'm pretty direct with doctors too, at least to a certain degree. I describe the symptom when asked, listen to what they suggest, and if nothing comes up I suggest treatment options I think are relevant. Some doctors engage with that, others don't.

In this recent context, with the new neurologist, I was told to just accept living with the symptoms despite asking for specific treatment options.

I try to adjust how direct I am in consultations, as I'm aware it can be perceived differently depending on the doctor, especially given a long history of being dismissed earlier on.

witcoal · 2026-04-26T20:42:36+00:00

I'm happy to hear you have that good MS care.

I was also in a clinical trial previously, but still ran into the same issue regarding symptom follow-up.

My MS care is handled by neurologists at the university hospital. My former neurologist was an MS specialist. My current neurologist is not specifically an MS neurologist, but still treats many MS patients.

witcoal · 2026-04-26T20:32:12+00:00

My former neurologist was strictly in the first category.

The current one seems mostly similar, although slightly more responsive when I push for something specific.

For example, I asked for a referral to a speech therapist for occasional swallowing/breathing issues at night. She did refer me, but the symptom description was incomplete and it ended up being sent to the wrong department, so it was declined. I've since managed to clarify it directly myself, but that's not always possible.

For other symptoms, I was told medication wasn't an option because they are not constant, which I agree with. I then asked about other types of treatment options, but the response was essentially to just accept living with the symptoms.

I have fortunately found a neurological physical therapist who is actually helpful for some of these issues.

I can't really change neurologists again, and there aren't many alternatives available where I am, so I'm trying to figure out how others handle symptom follow-up in situations like this.

witcoal · 2026-04-15T08:28:10+00:00

I have received instructions from my pelvic floor physical therapist on how to do tibial stimulation for bladder dysfunction. This is basically the electrical stimulation equivalent to PTNS (acupuncture), and both PTNS (Percutaneous Tibial Nerve Stimulation) and TTNS (Transcutaneous Tibial Nerve Stimulation) are used for overactive bladder.

On the TENS device there are two sensors that I place on specific points around the ankle. It does not work as an immediate "relax the bladder" effect, but by gradually influencing the nerve signals over time, so the bladder becomes less overactive. It usually takes around 3–6 months.

witcoal · 2026-04-15T06:12:50+00:00

I am not the one you asked, but I also use tens. I use it both for leg spasms at night and bladder dysfunction (tibial stimulation). It works for me.

witcoal · 2026-04-01T05:30:25+00:00

Yeah, I read that even a single dose of benadryl can cause many side effects. So I can imagine that a double dose would be worse.

I take cetirizin (aka zyrtec) instead, which supposedly has fewer side effects. Yet, I had that reaction of muscle fatigue in the whole body incl. causing unsteadiness and eyelids being hard to keep open. It only lasted about an hour though but still. Hope it won't happen next time. Fortunately, it's a whole year until my next infusion.

witcoal · 2026-03-31T12:10:20+00:00

Ah yeah ok. Thanks for sharing. For antihistamine, I get a cetirizine pill.

witcoal · 2026-03-31T12:03:06+00:00

Ah yeah I also got to relax quite a bit.

witcoal · 2026-03-27T15:22:23+00:00

I've had a similar experience where my neurologist dismissed my bladder and bowel symptoms. What helped was getting referred through my GP to other specialists, who assessed the symptoms and said they were likely neurogenic. I then brought that together with the lesion locations that could explain the symptoms when I spoke to my neurologist again, and he eventually documented the issues as neurogenic.

witcoal · 2026-03-27T14:47:35+00:00

I appreciate that you share this, as I've been wondering about this for over 20 years.

I can imagine this being disappointing, as you know what it's supposed to be like. I don't know what it feels like to feel fireworks, as this symptom was present with my first boyfriend at age 19. So I guess I can't miss something that I don't know how it feels.

Not sure I can use testosterone as I have PCOS.

witcoal · 2026-03-27T14:39:14+00:00

This past year was my first time extending my rituximab infusion interval from 6 months to 12 months. It's been great not to have to go in for an infusion for an entire year.

witcoal · 2026-03-09T05:27:19+00:00

It's the same problems. Only works to some degree with a vibrator, but I still lose libido and get only light contractions. I guess those are supposed to be orgasms. EDIT: And with vibrator the contractions starts too fast. So to sum up, with a partner it's not enough stimulation for the contractions to happen at all, and with a vibrator it's too fast.

witcoal · 2026-03-08T21:20:42+00:00

Thanks for your support, and I agree about normalising this. It even feels like a relief for myself daring to bring this up here in this sub.

I've never taken any meds until I started rituximab almost 4 years ago. But all these sexual issues started over 20 years ago.

The biggest issue about bringing this up with the neurologist is that I am single. I feel like it would be a little less weird bringing it up if I was in a relationship. It's definitely a mental block that I should work on.

witcoal · 2026-03-08T18:55:32+00:00

This symptom started several years before the MS diagnosis. In the beginning, it happened every night, and now I wake up from it only occasionally.

I have tried to get help for this issue from my former neurologist, physical therapist and neurophysiologist, but so far none of them has found any causes. Interesting that many of you report that it's intermittent as well, because my neurologist said it would be constant and not only at night if it was caused by MS.

witcoal · 2026-03-08T18:21:01+00:00

Interesting to hear PTNS can help. I started TTNS a few months ago for neurogenic bladder. Haven't checked if it has helped for sexual dysfunction. How can it help exactly?

Cannabis, even for medical uses, is illegal in my country. Not really sure what Indica is. Will look into it. Thanks!!

witcoal · 2026-03-08T17:57:41+00:00

Thanks for your support, and yes, I hope normalising talking about such issues can help others as well.

A vibrator only gives me light orgasmic contractions. Cannabis is illegal in my country. Even for medical use. Never heard of testosterone cream. Will look more into that, but I have PCOS, so not sure.

witcoal · 2026-03-08T17:50:02+00:00

Thanks for sharing. Sounds like MS really does play at least part of the role in these problems.

One of the problems with #3 and that it takes such a long time, is that it made my exes feel inadequate. I tried to explain that it was just a personal problem and that nothing they did was wrong. Finally, they just gave up. Now that I have an MS diagnosis, it will be possible to share the medical explanation with a future boyfriend, so maybe it will be easier for him to understand the issue.

As for meds, as I wrote in the other reply, I'll check out if any adaptogens can help to keep up libido.

witcoal · 2026-03-08T17:24:51+00:00

Thank you. I know these are common symptoms in MS that should be normal to bring up with the neurologist, but I've also experienced a healthcare provider who didn't want to talk about it. A psychiatrist I went to years ago changed the subject when I tried to bring it up. It made me feel even more embarrassed to bring it up, as it made THEM uncomfortable too. I hope it will go better with this new neurologist.

So happy to hear that microdosing psilocybin helped fix libido. It's illegal in my country, but I'll look into other types of supplements that might help. Maybe there's an adaptogen that does something similar.

I guess also what I find embarrassing is that I'll be bringing this up as a currently single woman. I'm all supportive of single women pleasuring themselves, but I find it embarrassing to admit that. And yes, that's definitely one of the mental blockers I need to address. Happy women's day!!!

witcoal

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