www.incontinentsupport.org

Greetings from Planet Suzy

Hello! I’m Suzy from Welwyn Garden City (a small town about 20 miles north of London, England, originally from Dundee, Scotland), 38, and a fairly recent finder of this forum. My life is varied and complex, but I will try and break the relevant chunks down a bit – hope I’m not prattling on!!

I presently have been diagnosed with the early stages of Huntington’s Disease (inherited from my dad), Gender Dysphoria i.e. a post-op male-to-female transsexual, IBS, and Borderline Personality Disorder, with mild asthma, under control now. More recently I’ve been diagnosed with “probable” Chronic Fatigue Syndrome this Spring. I live with the love of my life (and now my wife) Caroline, and I work self-employed publishing transport timetables (schedules) from home. Also enjoy hardcore wrestling, and a long suffering Arab (the term for Dundee United FC supporter!)

During my childhood and teens I don’t recall having any kind of toileting problems (aside from my brother having soiling accidents, nothing which was talked of otherwise). This was the case until I moved down from Scotland to London at the age of 20. Fast forward about two years to Autumn 2001, I’d kinda left a dream job on bad terms, and my health was starting to slip. From no-where came a wetting accident, quickly followed by a fecal leak too. Now, this was a bit surprising, to say the least – lucky it was nearly Winter and I was more of a night person! I’d never had anything like that, aside from odd things like when sick etc. After about two weeks of mostly urine incidents, I went to the doctor… and was sent to the local hospital with a referral letter (suffice to say the coffee I’d prepared that morning resembled treacle when I got back home five weeks afterwards!!!!)

Five weeks in North Middlesex Hospital (pre-transition, so still as him not Suzy!) ended with no real cause other than “stress” – but in the end I was on oxybutynin and Intermittent catherers, as well as a small number of pads. While initially I was just happy to get out of the hospital, I seem to recall this went downhill the following year (in terms of urinary problems). I moved back to Scotland over most of 2002. I was given pads/all-in-ones/nappies/diapers from the local CS, which Shiloh Contifit Plus which worked well – whatever happened to them?

I’d got slightly better health (in terms of less accidents) early in 2004, which was good for me. That was the year I planned to transition/come out – and that went surprisingly well. (25 at this point). However, the following autumn, the problem started to rear its head again. Back in the same giant wrap-around pads, as opposed to small pads and the occasional anal (Conveen) plug I had been using for a few months. I had been told to get onto HRT, to the point where the Continence Nurse was practically very positively recommending it! (It was on the To Do list…)

Imagine my surprise when, having done that, my problems started to go again… slowly, but surely. This was useful for late 2006, as there was talk of (gender reassignment) surgery in 2007 around that time. That went fairly well – catheters do hurt even more now! Aside from a fixer-upper two years later, the rest was all fine.

Also over the years, I had tried changing/avoiding foods for a while each – like sorbitol, gluten, and lactose. Initially it helped, but then the issues went back to normal.

I’d not had problems with urinary systems for many years, aside from a couple of weeks in 2011. I did try daily enemas (to combat the IBS) from October 2015, but this was reduced to weekly, after not having massive effects.

So, to bring things back forward, over the past few months, I’ve been having more and more issues of urge incontinence, on occasion but not every day. This can be urinary or faecal, but on occasions only, but this is in addition to the slight everyday faecal smearing. The latter is a bit different as it’s sort of always been an issue, but just something to make me a tiny bit ashamed. So, I’d use sanitary towels (even though I don’t get periods), which I’ve then grown through Tena lady pads, still not long enough! There are also a large number of visits to the toilet for me regularly, presumably the result of drinking a fair bit to avoid dehydration headaches, and to counteract the effects of the Quietapine (one is notorious for drying your throat out overnight, and I’m on four!)

I had already been going out for appointments (and days out from the office!), travelling from place to place. I’d been planning days out thinking “well I know there’s toilets there……” etc. but not too much of a joke – the curtailments to many trips recently having involved fatigue, rather than more serious urinary problems. There’s clearly something to think about, so I decided to buy some all-in-ones/nappies/diapers. These were initially planned to be used for my holiday, about four weeks left to go today! However, they got me thinking. A few recent events came to mind – like when I was walking up stairs with bags of shopping, and suddenly got the urge… held in as much as I could, but still ended up leaking. There was also the time out shopping when I had to run off to the loos, to leave the Mrs to wait for about 20 minutes, while my IBS flared up – and several others. Now, this was not all the time, but when combined all together, I wondered if it was perhaps time to try these again?

After a couple of days trying, I’ve gone back to using the all-in-one style of pads/incontinence protection, with the aim of making my life easier. (I also plan to increase the use of the disposable enemas over the next month, to try and make cleaning up of that less often – but time will tell). These have done that already, in that they do make my life a lot easier!

However, it was then I was thinking I must be mad, to consider using such protection 24/7, not as bas as before, but more of a combination of things? Well I did a search online for an Incontinence Forum (I run a few on other subjects), and found this one. I was pleasantly surprised to find many of you in similar terms of protection requirements, and “just in case” thinking. I did like some of the positive thinking across several threads, which lead me to think that not doing this could be potentially worse – and that’s happened. So, they are a very good starting point for now!

So, that’s my story… hope it wasn’t too long! I’m always happy to talk about any of the above, and would love to hear from anyone – especially those in the UK!!!

Right – dinners about to buzz, and then there’s a game later…

p.s. Pusskins4Mouse? My wife says I have a cat-like style of affection, and she’s Mouse…

Kind regards,
Suzy x

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Suzy x

Please forgive my tardy welcome. Although your introduction was most informative, your inclusion of early-stage Huntingdon's did make me sit up and take notice. That is one terrible disease; I hope you will have all the support you will need. Although we do take pride in being an effective support community, that is one diagnosis that leaves me unable to guess what effective support would be. Again, welcome, and let us know what we could do that would offer effective support.

Welcome. Incontinence symptoms appear to be a not-infrequent side effect of gender-reassignment surgery. A 2005 study found: "Post-void dribbling was reported by 79% of the FTM [female to male] transsexuals, and 16% of the MTF [male to female] group reported some form of incontinence."

https://www.ncbi.nlm.nih.gov/pubmed/15716207

There are some forum members who have written about experiences similar to yours.

Noe

Thanks to everyone, including if you messaged me by PM.




Thanks Patrick! Yes, the HD isn’t too bad right now, but I know it could get worse. I wonder if you have a friend or relative with this? (You can PM/DM me if you prefer).




Thanks Noe! That was an interesting one – I’ve not read that one before – so thank you. It happened from roughly five years before surgery happened, but the fact it kinda came out of nowhere meant I was also thought to myself “I need to do what I can, while I can, and have a good time doing it….” And a lot has happened since !!!

Suzy xx

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Suzy x

Well, hello again from Planet Suzy… I’ve been meaning to write again for a bit, but it’s been far too long! Sorry! I trust you all had a suitable festively appropriate break! My wife spent two and a half weeks around the holidays off with the flu. However, in a bright moment, she’s decided never to turn a flu jab down again! Yes, it’s March, but weather warnings everywhere round this country!

My wife was made redundant from her job of 12 years last Summer. The company was then on it’s third owner (now fourth!) and it wasn’t the first (or last) round of redundancies… She started a new job mid-January, now working for Microsoft Research in Cambridge… but the old work have been in touch to try and get her back! Time will tell I guess, if they do put their money where their mouth is! With that in mid we looked at moving back up to Scotland, where we both grew up… too many external things kinda happened outwith our direct control… but she has a new job (on about 5/6ths of what she had before) now, so we’re staying put for now.

After a few issues (and some non-despatch of items from the previously good supplier) I went back into disposable pants during the day (I work from home, and the loo is about 25 feet from the desk!). However subsequent issues with travel times had lead me to try a combination – using these, and wraparound/all-in-one style underneath. That has proven to be useful for me, as it’s removed the previous planning days (even just shopping five minutes away) around the location of an ever-reducing number of public facilities lol That has certainly helped with being able to do more – weather, mental and psychical health permitting!! Dealing with urge (both sides) more than anything is the key right now – less of an issue at home! Aside from one notable incident (where I seemed to “flood” the one day I was wearing light grey soft trousers!...) it’s been fairly successful.

Was at the Bladder and Bowel Clinic appointment the other day. I asked my doc for a referral for potentially supplies, and more in case something starts going further wrong than it is now. Got some samples of their supplies in today’s mail, and we will see how they do in the coming weeks and months. It’s fairly stable at the moment, but there is a saying over here that “every day is a schoolday”… well, I usually learn something! Not too bad appointment, even if it was a snow day earlier this week!

So, for now, things are good-ish. Usual ups and downs, and lots of experimenting right now…… but time will tell !

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Suzy x

Hi Suzy

I'm transgendered as well (female to male). Welcome to the board. My incontinence started after a surgery to fix my broken leg (I fell on an escalator and broke my right ankle in 4 places.) 3 years later and I'm still having issues and have to wear diapers 24/7. I had a test where they put a catheter in you (can't remember what it's called dang it) but they couldn't even get a baby catheter in. Shortly thereafter the doctor left and I've been bouncing around to different doctors since. She was great and had many trans clients.

Welcome again

Well here's an update...
After over 11 years together, I split up with my wife/partner Caroline, in July past. Been in various temporary accommodations but now have recently got somewhere permanent in my home town of Dundee, Scotland. Was staying to begin with round the back of the bus garage, and now just round the corner from the football (or Soccer!) grounds... talk about being right next to your interests! lol

Did finally get a Continence appointment down south late summer and ended up with tena flex and slip for a while, but flex didn't seem to be as easy as a pull up, and the velcro involved was irritating! Intereestingly the health trust involved did not prescribe pull ups BUT when i was in one of their mental health facilties (twice earlier this year), they had them in there! Go figure eh...

... Did have an appointment planned for earlier this week but my own fault it was late - not entirely happy with the way it was handled... yes I was late (a bad day for many reasons) and then they still had 30 mins left, no one replied to my voicemail - and they were more concered they were eating some chocolate... anyway the first one of these i had was 10 minutes, Herts 20-25 minutes, so there was clearly more than enough time for me to be seen.... one of these things but time will tell how long that is.

While waiting for my appointment i ordered some from Gompels (own brand) after reading a recommendation here a while ago... this is what i've used for the last month or so
https://www.gompels.co.uk/gompels-all-i ... us-20.html
They are plastic backed - just be careful it is easy to put your fingers through the plastic to begin with! lol

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Suzy x

Busy busy still here in Dundee - and in a new relationship. Currently semi-long-distance but it's early days yet.

Here in Dundee, things are going well. After a couple of less than interesting appointments at the Continence Service, had one late March 2019, when I advised the small pad samples (well by my standards and size!) did not suffice at all - so they arranged for a delivery of all-in-one/slips/nappies/diapers from iD Expert... and those are working well, using those 90% of the time now.... getting four/day of the Plus (blue lettering on pad/packet) and buy an extra two myself... the supplier has Plus and Super in my size, so I've gone for the more absorbent ones - and mostly use those at night... these are textile-backed with gripping tapes, which is a change from the adhesive ones.

There was a bath when I moved in here - and I was put through the system to get shower fitted instead. Chased that yesterday - currently fifth in the queue - and hopefully June.

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Suzy x

Sounds like you are facing a lot of challenges, but it also seems as if you are keeping a positive outlook. I've found that staying positive helps me keep going and gets me through the rough times. Hang in there, Suzy!

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"When you die, on your deathbed, you will receive total consciousness. So I got that goin' for me, which is nice."

Thank you!

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Now my recent hospital visit (outpaitent planned appointment for flow test etc.) has resulted in me being recommended to try Tamusolin - I've seen what online what it will do, but does anyone have any practical ideas or expereicnce that might not immediatly apparent form the packet?
Start date is TBC as it was only a week ago past Thursday - my doc hasn't had the letter as of today to add it to my list (drawer number 19 will be lol!!) - but I will try each week.

Shower installed and a shower seat added, which are working well.

Below is a general health-related FB post I did a few weeks ago - to bring everyone up to the same point. Most of this covered above but maybe of use to anyone new?

My medical history is really chequered. As there are new and old people on Planet Suzy, and I feel time to catch everyone up, so we are all singing from the same hymn sheet, if you like. This is because some of you know some bitts, but I’d like you all to know the rest. on the same state. It should be understood that none of these actually are new - or fatal in clinical terms, but there were a few close hits with depression/suicide attempts in 2017 and 2018 (much better now). First four have the biggest impact, rest more minor. Please don’t feel sorry for me – this post is to inform only.

“The Big Four”

1. Myalgic Encephalomyelitis (copied the full spelling from Wikipedia so I’m sure someone will point out if this is wrong!)/ME/Chronic Fatigue Syndrome/CFS
When? Diagnosed in 2017, no current cure.
What? Causes me to be tired, and often have really bad days/have to cancel or change things at short notice. Hence normally a day off after days out. Particularly bad when combined with other issues i.e. tired so walk into table so get upset etc. Genuinely, no two days can be predicted – I’ve tried to kinda note down patterns but in my case, there is no obvious source.

2. Huntington’s Disease/HD/Huntington’s Chorea
When? Inherited from my father, gene test positive in 2005. Currently in very very early stages of the disease. no current cure.
What? Causes co-ordination, moods and memory problems for me right now;
Co-Ordination problems – walk into things, trip over, stumble, fall on street, ankle will give way, etc.
Moods – see BPD/D/A as better than was.
I can have problems remembering more recent events and sometimes appointments, or I might have to ask a question more than one time. This is in contrast to, for example, being bale to remember entire timetable leaflets from 1989/1990s tayside area bus wars, for example, but I may need to ask the name of who I am speaking to several times.

3. Borderline Personality Disorder/Depression/Anxiety
When? BPD formerly diagnosed after moods issues in 2011, but mostly stable now. Depression/Anxiety probably go back years but first formal problems in 2002/2003.
What? BPD gives me rapidly changing moods – although through the Quietapine I was prescribed from the HD clinic in Cambridge, this has been better than before. (Also cured my insomnia… 99 times out of 100 !!!)
Depression/Anxiety often makes me feel low, not worthy, depressed even to suicidal thoughts – formerly on an hourly basis or worse but now much better and get triggered by other problems coming. I think this was partially because of four years at a Christian school when I was deemed by one teacher to be not worthy – yet as soon as I went to Mossgiel I was in beyond the top classes. So that probably had an impact on me, or so thought some therapists in 2006/2007. Think I blogged about that when I wrote to them? Anyway after years of being told I wasn’t good enough – yes it has had an impact on a 5-9 year old!! lol

4. Incontinence / Urge Inco. / Irritable Bowel Syndrome
When? These things started out the blue in 2002 after I left a dream job on bad terms but IBS and urge issues probably more likely all my life. Worse then than it was now, although not as bad as before late 2002.
What? Largely urinary (sometimes faecal) Incontinence at night, and less so during the day. Requires use of protection at all times, largely as a result of two sets of different urges that can come from nothing.


“THE REST”

5.6.7. Asthma, Heartburn, Insomnia.
Mild issues by comparison - mild asthma (no attacks since 2006), heartburn (usually controlled by ranitidine being added alongside an antihistamine), and insomnia (now usually controlled by Quetiapine for other things).

8. Previous Gender Issues
Yes, sometimes I still get asked, and for those wondering what the hell I mean by 15 years of Suzy despite being 40 – yes I’m a postop male-to-female transwoman. Came out 2004 (hence April 2019 being 15 years of Suzy), and only serious regret was not doing it sooner. Surgery 2007 then 2009 fixer upper then… maybe more in 20-oatcake but we will see how the rest of my life goes.

9. Teeth and Speech Issues get an unhonourable mention too
I have a number of issues here.
Speech – was tongue tied years ago, hence speech therapy work required in my early days. As well as HD having the potential to effect my speech later, I’ve had some since transitioning. So I've always been conscious about my voice.
Teeth – totally separate – late 1980’s I broke my tooth on the ice at primary school. Despite many dental visits, every time making the pain worse and worse. So, several reverts to doing work, but too many problems and pain mean it’s somehow on a back burner as every time they try – things get worse. No plans to do anything right now, but maybe look again late 2019/early 2020 when the rest of my life is quieter!

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Suzy x