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Sjogren's Syndrome Support

Could REALLY use some support...... (long post)

Hello all…I am dealing with something that is EXTREMELY hard and VERY embarrassing at the same time. This is not easy for me post but I am VERY concerned and I could use some support and advice.

Here goes…back in the middle of Sept I started wearing a heart monitor, I had to wear it for 30 days. And around that time, I THOUGHT I started excessively sweating at night. Nearly every morning I would wake up and my sleep pants would be damp. Not soaked or anything…just slightly damp.

Well, fast forward to the present and it is still happening!! But it’s NOT sweat!!! And this past Wed night, I woke up in the middle of the night (around 3 a.m.) because I had to go pee. On the way to the bathroom I noticed my sleep pants were wet again…well they were not just wet…THEY WERE SOAKED this time!!! I cleaned myself up, emptied the rest of my bladder, changed into dry clothes (underwear included) and sat in my bathroom and cried for a few minutes!!

Then I thought about my poor husband!!! Luckily my bed was dry. I must have woke up just in time! I am HORRIFIED!!! I worry about my husband!! I have talked to him and have his full support and he is so understanding!!

So all this time, I have been losing control of my bladder during sleep! It has been leaking all this time!! Nearly EVERY night! I can count on one hand the nights it HASN’T happened since Sept 14th. That is OVER 2 months now!!
What is happening to me??? It never happens during the day. I don’t dribble when I laugh, cough or sneeze yet. And I am getting over bronchitis and I am coughing a lot during the day…and no dribbling then.

I am so embarrassed!! I dread going to bed at night for fear of a full blown accident like I had on Wed night!! I have an appt with my PCP this coming Monday at 1 p.m. I had blood work done recently (a week ago) and my blood work is all normal (no signs of infection) my urine is clear to light yellow, no burning or stinging when urinating. So no infections! I am even cutting off all liquids at 8 p.m. (I go to bed between 9:30 & 10) and that is not helping the leaking during sleeping!!!

WHAT AM I GOING TO DO???
So sorry this is so long…I am beside myself…
ANY advice is GREATLY appreciated!!!
:frowning:

I’m so sorry. Going to the doctor is absolutely the right (and necessary) thing to do. You may need a two part workup, starting with your PCP. The next step might be a urologist, might be a GYN, could even be a neurologist. In the meantime, much as I hate to say this, I would probably wear an adult undergarment to sleep. The only thing worse than the actual urinating while asleep is having to clean the bed as well.

As horrible as it seems, this is a medical issue. Try not to be too rough on yourself.

Thank you Stoney!! I appreciate you taking the time to reply!! My PCP actually delivers babies as well as practices general medicine (she also does my well woman check ups) so I am in very good hands!!

I had a total hysterectomy in 2009 (due to uterine prolapse) and I was told at my last well woman check up ( this past summer) that my bladder has fallen slightly…but it is not bad at all considering my hysterectomy was 7 years ago. She keeps a close eye my bladder each WW check up.

Again…thanks so much!! I am trying but this is SO demeaning!!!
I just got dx with SJS in April this year…and I feel like it is completely taking over!!! Autoimmune disorders are NO JOKE!!!

Hurry up Monday…
:worried:

I am not a doctor but you could have Interstitial Cystitis which is a depleted lining of the bladder. It can cause uncontrollable wetting. Use a water proof mattress cover and most stores carry undergarments for this. Hang in there…I know it is embarrassing. You are safe here to vent. Keep us posted!

Thinking of you- this is horrible to deal with, and well done for being brave enough to talk to people about it. Interstitial Cystitis is something which can be linked/ caused/ more common with SjS (not a medical person so don’t know the right terminology!) and as Deeds says can cause leaking. IC can be aggravated by what you eat and drink; tea and coffee, artificial sweetners, carbonated drinks etc. can make this worse, so it might be worth thinking about if there’s any link for you or making a few changes to see if it helps at all. (There’s lots of info about IC online). I’ve been having problems with this myself recently!
Might be worth asking about at your appt. Keep us posted!

Just a thought- could any of the medications you’re on cause this- maybe you’re sleeping deeper on them and not waking up when you’re needing to go, as this only happens at night?

Thank you all for your replies!! I will certainly bring up IC at my appt if my PCP doesn’t.

As far as sleeping too deep…I wear a Fitbit while I sleep and it has a sleep tracker and according to it I am very restless nearly every night. It tells me how many times I was awake & how many times I was restless and it is usually multiple times awake and in the double digits in the restless department.

I do appreciate all your advice & ideas!! And that no one has judged me or belittled me! I am grateful for you all!!!

I will update after my appt on Monday!!

This isn’t without hope dear. I have IC. Mine is controlled. It is the first auto-immune issue I was diagnosed with. I am currently not on meds for it as I control it now by not eating the foods that trigger it. First go see your Gyno Doc. They helped me with mine… had a bladder hydro-extension (stretching the bladder) and used to be on meds, lots of what they call pelvic cocktails (through a catheter). Physical Therapy helped too. You may have a bladder that has slipped and needs a sling. Do not be embarrassed. It happens to lots of women. Keep your chin up dear.

Thank you so much for your kind words. If this is indeed what is going on, your post was very encouraging! I have never looked forward to a Dr appt as much as I am this one tomorrow.

Thanks so much again!

Please keep us posted. I’m glad you know this is a safe place to come. Sounds very distressing but at the same time, I am going to say I agree with the others that its likely a medical issue that can be dealt with. Thinking good thought for your appointment tomorrow.

Thank you!! It is very distressing but I WILL meet this head on and deal with and accept whatever it is. It WILL NOT define me!!

Thank you so much again!!

1 Like

I am so sorry you are going through such an uncomfortable situation. I do suggest you see your physician, since anything else could be just speculation and could be counter productive. Try not to be too hard on yourself, after all it is out of your control and a medical problem. We are all here for you. I will be praying for you and really hope you find a solution. Take care. Happy Holidays!!

Thanks so much Arlene…I have an appt with a Urologist on 12/22. I also saw my Rheumy on 12/12 and he put me on Neurontin for suspected Peripheral Neuropathy (no testing done) and said I may need to be referred to a Neurologist in the future.

So I’m hoping between the Neurontin & the Urology appt that one or both will help.
Thanks for your kind words!
Happy Holidays to you as well!

Lisa

Oh, you are so sweet. Good to hear you are on your way to some stability. It takes time to get used to life after SS, but life… is life.
May I recommend The Sjogren’s Book? It’s available on Amazon. It really has helped me understand all the implications of this disease.
Hang in there!!

Thanks for the suggestion! I’ll be sure & check it out!!

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