Wednesday 17 September 2014


(Too Much Information) I see that written everywhere over support forums. Usually there's an apology stuck in there too.

Sorry, TMI post ahead. Please remove admin if not okay.

I've done it myself on more than one occasion. But each time a small part of me thinks, I wish I could just ask the damn question without feeling like I have to apologise.

You see, every time there is a TMI post it is always followed with comments like,

OMG, me too!

I thought I was the only one.

Thank you so much for posting.

Every time.

I've had the same reaction here on the blog, Whether I've posted about my bowels, or my hysterectomy, I am always flooded with thank you emails and messages. Though I wish people would post here on the blog, or over on FB, I understand their reluctance. So much of what is in truth, just a normal part of illness is wrapped up in layers of stigma.

You don't speak about those things.

Disorders like Dysautonomia come with a whole host of less savoury and often confronting symptoms. The Autonomic Nervous System runs throughout the body controlling multiple systems. And yet even most of our doctors speak only to a select number of symptoms, most commonly blood pressure and heart rate.

When was the last time your doctor asked you about your sex life? The literature is quick to point out impotence as a potential for men, but we women rarely get a mention. In truth, even for men apart from the impotence issue, little else is discussed in relation to sex. Yet whether physiologically, emotionally, or both, our sex lives can be impacted by Dysautonomia. A recent closed session from Dysautonomia International with noted neurologist and Dysautonomia specialist Dr Svetlana Blitshteyn (Sexual Health and Pregnancy in Autonomic Disorders), revealed a wide range of sexual, gynaecological and reproductive concerns. For many it was the first time these issues had been addressed let alone acknowledged. Dr Blitshteyn was able to provide answers to multiple physiological questions in these areas, clearing up myths, pointing out continuing holes in our knowledge and allaying fears for many. I have been ill for 8 years, yet this is the first time I've seen this subject addressed so directly. And the response from patients was overwhelmingly positive and grateful.

This of course doesn't include the emotional aspects of intimacy. When nausea and other symptoms get in the way of sex. Or the way we respond male or female, to body image, and the changes that can occur thanks to medication effects. For many of our doctors it would seem that as chronically ill or disabled patients we are supposedly asexual beings. Yet intimacy is an ongoing issue discussed in many forums by patients at a loss as to how to maintain it in a relationship.

Bladder and bowel issues are also highly common in the Dysautonomia community. Diarrhea, constipation, dumping syndrome, urinary frequency and urinary retention, and issues relating to continence abound. Yet again these are so rarely discussed by our doctors that patients feel there is something wrong with them when they occur. Without fail, every time I have brought up my own bowel issues here on the blog I am inundated with emails, the same for urinary issues. There are patients living with devastating continence issues who are embarrassed to discuss the issues with anyone, let alone a doctor. Yet there is help available and organisations such as The Continence Foundation of Australia who can help.

I had a little hissy fit over on FB recently about the LBL campaign from Poise, which exemplifies the problems we face.

Maybe I'm tired and grumpy today, but I get irritated with the Poise LBL ads. Are we so afraid to talk about bladders and incontinence, that we have to create an acronym to cover up what is being discussed? Women don't seek help because they are embarrassed, and yet there are organisations like Continence Foundation of Australia which can point women in the right direction to find help. There are specialised programs and specialised physiotherapists. Urinary incontinence is amazingly common, especially following childbirth, and can occur in certain patients with autonomic issues, and there are solutions, but people feel alone because it is not openly discussed. We don't need to shy away from the words 'bladder' or 'incontinence' as if there is something shameful about them. We need to be able to discuss these things, go to our doctors and find our individual solutions. Part of that is using real words and treating it as any other health issue. Take away the taboo and stigma through openness!

And given the numerous response's underneath I am not alone in a wish to destigmatise this issue.

For the most part Dysautonomia patients will be under the care of a neurologist or cardiologist. Embarrassment aside, it is not instinctive for patients to ask these specialisations about their continence or sexual issues. The emphasis is on heart rate and blood pressure, and many other symptoms simply remain undiscussed and in turn unknown. Many will need their doctor to raise the issue. Yet time and again this is not occurring. If our doctors are ignoring or uncomfortable asking about these aspects of our disorder, why would we patients feel comfortable discussing them? How do we even know to ask?

Not every patient will experience sexual or continence type symptoms as part of their presentation. But at least knowing it is a possibility opens up the door to discussions and takes away the fear and embarrassment associated with what are simply symptoms of the disorder, or potentially, another disorder. Symptoms just as normal as tachycardia or hypotension.

Being open about these issues allows doctors to treat the whole patient. It is not about expecting our cardiologist or neurologist to treat our continence issue. But to at least be able to discuss the issue and refer us to an appropriate specialist.

It is also up to us, as patients, to move beyond a TMI response to what are normal regular symptoms of Dysautonomia and other disorders. Too many suffer for our silence. Sex, periods, bladders and bowels AREN'T embarrassing unless we make them so. And openly discussing them is the only way we will change this perception.

So I say, lets remove the stigma and taboo and move forward in discussion and better all round treatment.


Michelle :)

(I written extensively about the other taboo of mental health and chronic illness. You can find two of my main pieces here and here.)

I had to choose this Queens of the Stone Age song as my musical accompaniment. It's one of my favourites of theirs from the much under-rated Rated R album, plus the chorus kept popping in my head as I wrote.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.


  1. I never did get why talking about bowel movements is 'TMI' but talking about peeing too much is fine.

    and in the 8 plus years I have been diagnosed with this illness I have only seen the topic of sex bought up once on a forum.. A the young woman who posted that new topic got very few replies. ????

    1. I've seen sex come up a few times, more so the last few years. And more so in closed groups than open ones. But overall people either don't want to discuss it or, I've seen people told it's an inappropriate topic and threads simply disappear. Given that, at least on most of the boards I'm on, it's adults, often with kids, I'm pretty sure intimacy is an issue at some point. I really appreciated the Dysautonomia International Q and A for tackling the issue. Heaps of people were involved in that.

  2. urg, i just posted a very long response and I think it disappeared? Sigh...i will rewrite it later...

    1. Bugger. I got this one but not the other. :( Thank you for trying Cyndi I know how exhausted you are at the moment xx

  3. Sorry if I commented twice. Pls delete as you see fit xxx

    1. Bugger, bugger, bugger another lost comment. Thanks for trying Tanjil xx

  4. YES! Exactly. The first time I wrote openly about one of these topics was when I wrote a guest post for you about bladders. Then, I bit the bullet and wrote about the impact of bladders and bowels on my intimate relationship with my man. I have had lots of 'me too' responses from patients within our community, and lots of horror and shock from the non-sick. 'Why would you write about THAT in such a public forum?' I've been asked. Or 'Wow. That's brave'. Is it? Is it really brave to just tell it like it is? Turns out it is easier than holding it back. It has helped me enormously being able to discuss these issues on forums and support groups. That helps me to cope with the daily distresses of dysfunctional poos, wees and sex. I'm grateful for the power of sharing and thankful to you for helping me find my voice. As my Mum used to say... even the Queen farts. We are all of us human, all of us have to deal with these things. Finding compassion for each other's struggles shouldn't be too big a stretch.

    1. "Even the Queen farts" is now my new motto! There is such a societal taboo on these topics and it flows over into patient groups. I really wish we could be more honest as people are suffering out of shame and embarrassment. When you think of how many Dys patients also have EDS for example and the risks of various gynae and prolapses and the like if we don't talk about it how will people ever know it's okay to see their doctor. How many have continence issues. How many problems in their sex lives. It shouldn't me shameful to discuss medical symptoms.

  5. I just wet the bed the other night for the first time since I was a baby! Talk about a moment of shock. I thought that it was a dream the next day. I woke up having to go to the bathroom like I usually do and barely made it and while in there, my panties were soaked..I was like what the heck?! So I took them off and cleaned myself up. I went to put on clean ones and here my nighty was wet, so I was even more I changed it. I felt the bed before I got it and sure enough, here I wet the bed sometime during the night and it didn't even wake me (and I'm a light sleeper). I was embarrassed and shocked and just beside myself on how that could have happened. My husband has been jokingly calling me pissy pants for the past 2 days. But what do I do? Do I put myself on cut off drink time limit now? Do I bother telling my doctor?? Is he just going to tell me to go buy some Depends? Really?

    1. First I'd like to say thank you for sharing as I know that's not always easy. I'm so sorry Catherine. I can only imagine how embarrassing it must have been for you. My suggestion would be to contact your doctor, can just be your regular one, not necessarily a Dysautonomia specialist. Incontinence can occur for a number of different reasons and they would be best to guide you as to what that might be and what to do. Otherwise there are continence services in most countries that provide a phone consult service. Definitely worth getting checked out by your doctor and if they give you a live with it or Depends response you need to seek another opinion as that is merely covering up an issue, not seeking an a diagnosis and potential solution. Good luck Catherine xx


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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