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Awkward question for the ladies

Have any ladies experienced vulvodynia or vulva pain/itching etc as part of their MS?

I have messaged over the last couple of years about a range of symptoms that many of you recognized as sounding like their Ms symptoms. This above is my latest. I recall having a phone consultation about what I thought was probably thrush back in maybe September/october. The symptoms never really went away and more recently have become worse but tests for stis, thrush, bacterial vaginosis and urine infection have all been clear. I get really itchy and other random pain/ discomfort. It's doing my head in and I'm referred to a gynecologist. That's not til the 16th.

I wonder if any women on here with MS have experienced anything like this??

  1. Hi . I am glad you felt comfortable asking this question because I am fairly confident you are not alone. I hope others chime in and share their symptoms and experiences. There are loads of nerves in your vaginal area, so it makes sense that you would have MS symptoms there. Here is an article about restless genital syndrome, which is sometimes experienced by people with MS: https://multiplesclerosis.net/living-with-ms/have-you-heard-of-restless-genital-syndrome. It thought it might interest you. Your symptoms are definitely not just in your head. I hope you get answers and relief from your appointment. Keep us posted if you feel comfortable doing so. Best wishes! - Lori (Team Member)

    1. So interesting!! My new (and previous Neuro and other specialists) do not think I have MS. Of course that may be true. It stays in the back of my mind, but basically had accepted her theory that my symptoms are related to my epilepsy (though the symptoms I hd really intensely in 2020 did not seem to fit with seizure activity at all). What is going on now makes me wonder again about MS. I shake my right leg all the time. When I have tingling it tends to be in my right leg.


      What is really interesting in that article was the aspect of clitoral arousal in the absence of any sexual interest. I'd I think about it this has been common in the past when I have had what I assumed to be thrush or BV. Honestly, this is really horrible.


      I feel like I can't bring up MS because they have written it off due to no lesions in the brain MRI. I also had spine a year ago but the new Neuro didn't ask for spine in the recent one. I think she just asked for the MRI to placate me really.


      My GP genuinely believes I have neurological symptoms but doesn't think it's MS. She went to a conference recently with Neuro who talked about neuropathy with no obvious cause and she thought of me. I do feel that she and my neurologist care so that is something at least. I have to wait til the 16th to see the gynecologist but Neuro appt is on the 11th.

    2. Hi . It is good to hear that your doctors care and haven't simply written you off because they can't find definitive answers. There are several conditions that can mimic MS and should be ruled out. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. It is also possible to have MS with no visible lesions. This can happen because lesions are too small to see on an MRI. They generally appear later and lead to a diagnosis. If you ever decide to get a second opinion, you might want to try an MS specialist. The National MS Society has a tool that can help you find one in your area. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. Has your neurologist ever considered ordering a lumbar puncture to look for proteins usually found in people with MS? That would be helpful in ruling it out, at least for now, and might be worth asking about. I hope you get some answers or at least some treatment that helps. Thinking of you. - Lori (Team Member)

  2. Yes, I've had odd sensations there too, sometimes numbness, sometimes twitching, sometimes pain. Just a come and go type of thing. I'm sorry you are having these symptoms, especially in this sensitive area. It's good you are asking others living with MS about this prior to your appointment, but it's also good that your appointment is fairly soon. Something like itchiness may or may not be MS-related and it's extremely uncomfortable. Good luck with your appointment, and keep us posted. It will be interesting if your doctor has any information about this. Best, Debbie (Team Member)

    1. I can relate! Sorry this is a little long. I am undiagnosed, but have been having strange (mostly sensory) symptoms for over 5 years now, that have accumulated over time including:
      - Intense itching triggered by heat or light touch on my feet and a patch on my upper arms
      - Periods of weeks at a time where the area around my anus (sorry ladies) would be intensely itchy. This would last for 30 seconds to a minute, go away and then come right back. Thankfully it's been over a year since I've had this.
      - Tingling right lower leg and a patch on my back
      - Fleeting or longer lasting hot and cold or numb feelings in a few different body parts
      - Sharp stabbing pains in my ribs
      - Times where I can't control my body temperature and I'm shivering or way too hot in alternation, so extra sensitive to temperature change
      - Slight hearing loss in my right ear
      - Phantom smells
      - Unexplained tightness in my legs which is mainly in my hamstrings and mostly right leg
      - Sharp pain in my vulva area when using the toilet or just at random times, which I still get randomly
      - Very occasionally for about 3 hours to half a day or so each time what I now know is Restless Genital Syndrome or Persistent Genital Arousal Disorder! The only way I could find any temporary relief was to have an orgasm, and this had to be done many times in the day (which does not normally happen believe me)! It was such a frustrating symptom and almost painful


      I had blood tests for diabetes, thyroid, B12 etc all fine and no deficiencies in other areas like vitamin D. My GP thinks I am too young for menopause too. Last September I had a period where new symptoms appeared, including weakness in my arms (mostly right) which have left me with mild intention tremors in my hands and the ability to drop things more often, slight speech and swallowing issues where I would sometimes get a tiny bit of food going down the wrong way and have to cough it up, and my words or letters would sometimes get mixed up, chewing could feel a bit slowed, continual tinnitus and random muscle twitches.


      The worst symptom however was pain in my vulva that would radiate upwards a little in my pelvis just before and during orgasm. I would also feel my pelvic floor area 'twitch' at times. This only resolved after 5 months! Last year my GP referred me for a clinical suspicion of MS, which I didn't consider or know much about at the time, and he decided the vulvodynia was associated with the neurological symptoms and there was no need for a referral to gynaecology. At long last I have seen a Neurologist, and had the standard first appointment tests for balance, eyesight etc. which I passed with the exception of the tremor, and a brain MRI where only 1 potentially relevant lesion has been discovered, and I have been sent back on my way with 'benign neurological symptoms'. I am lucky as in I can still run, cycle and go to work and the symptoms don't stop me from functioning, however I know something is not right so will certainly be pushing for more tests if new symptoms arise. I have been advised to eat well, exercise well and keep a regular sleeping pattern as my symptoms will be worse when I am tired or stressed. Plus keep a symptom diary without obsessing over it. I didn't get fobbed off with it's 'anxiety' though like a lot of others.


      I did recently come across a condition known as Dysautonomia, where the autonomic nervous system doesn't work properly at times so there is either more, or less activity than there should be. This could explain lots of my symptoms and perhaps the unwanted arousal symptoms we have both had.


      Anyway, sorry for the long story but yes there are others who experience this, it's really not pleasant, and I would love to know how you get on at your appointment and hope your symptoms subside ASAP.

      1. Thanks for sharing that article, ! It is interesting. Best wishes! - Lori (Team Member)

      2. Hi . Given all of your symptoms and the fact that the MRI showed at least one relevant lesion, have you considered getting a second opinion, preferably from an MS specialist? I shared this link above, but I will share it again here for you. It's a tool the National MS Society has for finding a specialist in your area: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. I hope this helps and that you get some answers and relief. Best of all wishes. - Lori (Team Member)

    2. Thank you I have considered getting a second opinion, and am currently awaiting an appointment with a different neurologist, hopefully for further testing.

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