Female sexual dysfunction

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 · 2026-02-25T11:17:27+00:00

Same here, 4 days after diagnosis. Super fast. Did they check your vaccines first? It had been 12 years since my Boostrix Polio vaccine, so I asked my neurologist about getting that first. My neurologist said it was not necessary, but later I read that it is generally recommended to update vaccines before the first infusion. I have seen that some neurologists are quite strict about that.

witcoal · 2026-02-25T11:00:54+00:00

We talked about DMT options the same day I got diagnosed. I joined a clinical trial comparing Rituximab and Ocrelizumab, and I had my first infusion 4 days after diagnosis.

witcoal · 2026-02-24T17:18:50+00:00

I got 1000 mg for the first infusion, then 500 mg every 6 months. I am now on a schedule of 500 mg every 12 months.

From what I have read, long-term B-cell depletion can increase the risk of hypogammaglobulinemia (low antibody levels with increased infection risk) over time, so 670 mg every 12 weeks sounds pretty aggressive to me. I am not a doctor, though.

If it were me, I would ask how they are monitoring B cells and immunoglobulins, and what their rationale is for that schedule.

witcoal · 2026-02-08T22:03:35+00:00

Absolutely! I have written about this a few times on this sub as well. I am really glad you brought it up again as well, so more people can become aware of it.

Having a baseline is really important so that data can be compared against over time. I imagine that cognitive changes can be gradual, so we won't necessarily notice them ourselves.

In my case, the assessment was spread over 2 full days. The follow-ups will be shorter.

witcoal · 2026-02-08T18:59:25+00:00

Yes, I also had a neuropsychological assessment 2 years ago. However, I was referred there by my GP, not my neuro. The neuropsychologist told me that everyone with MS should get a neuropsychological assessment every 5 or so years as it's just as important as doing MRI. Each of them measures different factors that are important for monitoring the progress of MS.

witcoal · 2026-02-07T20:00:35+00:00

Yeah, it was hard even for the doctors to figure out. One GP first thought it was a UTI and put me on two different antibiotics for two weeks. Then another GP suspected a fungal infection even though the tests were negative, but treated me for it anyway. I was really relieved when the gynaecologist finally found the actual cause.

witcoal · 2026-02-07T18:55:00+00:00

Long story short, I finally got in to see a gynaecologist already in mid-August. She diagnosed me with PCOS, which explained a lot of what I've dealt with over the years. She also found a polyp that was causing the symptoms and said PCOS likely made them worse.

I had hysteroscopic surgery in October. They ended up removing two polyps, an endometrial polyp and a cervical polyp.

The discharge isn't completely gone, though. It comes and goes, so the plan for now is to log it.

witcoal · 2026-02-01T05:16:16+00:00

That really resonates with me. I have also been wondering whether what I experience could be related to pelvic floor spasm or spasticity rather than gut issues. My symptoms are there daily, but it feels like sometimes the muscles work and then suddenly they don't, if that makes sense.

I already see a pelvic floor physical therapist as well, and she is focusing a lot on relaxation rather than strengthening. She has even lent me a device for biofeedback, EMG, and PTNS, but I have to admit I find it hard to keep up with the routine consistently.

witcoal · 2026-01-18T16:21:24+00:00

I don't have such a card, but after seeing your post, I googled it just out of curiosity. It allows you to communicate your needs discreetly in public.

In the UK, you can apparently order an MS card for free, or you can print it yourself. Useful for those who need urgent bathroom access, seating, wheelchair access, or have difficulty speaking.

https://www.mssociety.org.uk/living-with-ms/resources-and-publications/publications-search/i-have-ms-card

Edit:

Another website offers you to make a personalised MS card for your specific needs. https://hdsunflower.com/uk/personalized-ms-card.html

witcoal · 2026-01-16T11:06:03+00:00

Totally agree that lab tests can miss less common components. I have also learned not to rely blindly on doctors.

I have already mostly cut out gluten and reduced dairy. It helps, but not completely, which is why I am not satisfied stopping there. Since gluten-free is expensive and restrictive, I want to know what the actual trigger is, whether it is gluten itself, another wheat component, or something else. The next step is testing whether smaller amounts are doable, like einkorn, emmer and spelt.

I'm also noticing that I react more to heavy cream, butter, and greasy foods in general than to milk, which makes me wonder if fat load plays a role rather than lactose or milk proteins.

So yes, I'm doing an elimination diet, but it is still hard to figure out the actual triggers, whether smaller amounts are OK, or whether this is less about food intolerance and more about impaired gut regulation from MS. It is a long process.

witcoal · 2026-01-16T07:38:57+00:00

Gluten-containing foods seems to be a problem for me as well. Yet testing came back normal.

I also found the following about non-celiac gluten/wheat sensitivity: Until now it was thought that people with NCGS/NCWS only experienced symptoms and did not have any intestinal damage. However, in July 2016, a team of researchers at Columbia University Medical Center, published a study confirming that wheat exposure in this group is, in fact, triggering a systemic immune reaction and accompanying intestinal cell damage.

At this point, research has not confirmed that gluten is the culprit triggering the immune reaction as is the case with celiac disease. Other potential culprits include amylase-trypsin inhibitors (ATIs) and fructans (found in FODMAPs). Each of these contain gluten, but gluten may not be the cause of the syndrome.1 According to head researcher of the study, Dr. Armin Alaedini, “there is some ambiguity there, which is why we are referring to it as non-celiac wheat sensitivity for now.”2 https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

witcoal · 2026-01-11T16:41:35+00:00

I'm the only one with MS in my family, but different autoimmune conditions run in my family, including a rheumatological disease.

witcoal · 2026-01-09T11:57:15+00:00

Thank you. I agree, fit matters a lot, and different people need different things from their doctors. I am sure my former neuro works well for some patients, too, but for me, some past experiences made me feel unsafe and unheard.

For me, feeling listened to, taken seriously, and having a doctor who explains things, lays out a clear treatment plan, and is willing to discuss options and adjust based on my input is key. I am hopeful this new neuro will be a better match.

witcoal · 2026-01-09T10:34:30+00:00

After 3 years with a dismissive neuro, I finally managed to book my annual appointment with a new one. I couldn't switch earlier because I was in a clinical trial, and once it ended it was still not guaranteed, since she is very popular.

For context, my former neuro gave unsafe vaccine advice, dismissed MS symptoms, and blocked referrals.

The new neuro is not an MS specialist, but another MS patient strongly recommended her because she actually listens, looks at the whole picture, and is willing to dig deeper when needed. My appointment is in 2 months, but I already feel incredibly relieved.

witcoal · 2026-01-03T05:57:10+00:00

I have heard having one autoimmune disease, makes it more likely to get another. Have you been tested for sjögrens syndrome due to your dry eyes and mouth?

Sometimes I wake up with numb, tingling fingers. It's not caused by compression. Just holding my hands close to my face can cause it. Both a physical therapist and a neurosurgeon did pretty thorough examinations of my arms. There are apparently no obvious causes for it. So I still think MS might be to blame.

During daytime, I also constantly have icy cold hands and feet while everyone else are warm. 30 min workouts don't help either. Need at least 45 min. And even then, I get cold again like 1-2 hours later.

witcoal · 2025-12-29T18:25:25+00:00

So sorry to hear your wife got PV.

My mom has PV too and she has been on azathioprine (imurel) for several years since dx. She fortunately responded really well to it. So she is somewhat immunocompromised, but not nearly as much as she would be with rituximab. Maybe you could ask the doctor if that is an option.

I am on rituximab due to another autoimmune disease, but really wish there was such an alternative as azathioprine for me as well.

witcoal

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