60% gets it … 80% suffers in silence; incontinence

Have it, suffer heavily – but not silent.

60% of all women that have gone through radio therapy for Gynecologic Cancers – will come out with incontinence – and fecal incontinence. Men that had prostate cancer also get problems. And 80% of us suffers in silence – don’t talk to our doctor, family members or friends – don’t search for help and there is loads of help out there. Most help yourself.

Personal I think it’s important that people around me knows about my problem, because it tear me down – makes me feel very upset at times and they have to know why.

My tumor was where so close to my bladder that they where afraid that my bladder had been effected because my cancer where aggressive and had spread – a sister tumor was found in one of the glands. So of course when getting the radio therapy was it difficult for them – to avoid that some radiation ended up on the bladder – got 34 days of treatment and 5 different fields each day. So my doctor’s expected me to get some problems, but I wasn’t told and it hadn’t made a difference. It happen to me and – here I’m with a very weak, sore and sensitive bladder and I gets urine infections twice per month. This one of the side effect I got from my treatment – the one that bothers me most.

In Sweden you’re provided with free towel – Tena (Swedish) – we get support from hospital – where we can get operations and other help with the problems.

They look into your problem level and then they start up a help program, most help yourself with support.

1. Women are never shown how to go to the toilet right by our mums – we shall always sit like we do – when we have to use the nature  … our breast against the thighs. Because then the urethra opens up of itself and we don’t have to do anything. No pushing.

2. We shouldn’t go to the toilet more every 3 hours – we should never go to the toilet when we don’t have to. Because we are pushing and that weakens the muscles. So with leakage we have to plan a bit round the toilet visits.

3. We should always walk like we have a glass of water on our head and a pea between our buttocks.

4. When sitting we should never lean forward and when we stand up from a chair we should do it straight.

5. Also when the uterus is removed – the bladder often lean backwards because there more space and that means that – the natural breakage/lock between bladder and urethra will open up – so we leak.

6. We should do Pelvic floor muscle exercise (PFME) involves the contraction and relaxation of the pelvic floor muscles to improve bladder support and closure pressure of the urethra. Pelvic floor exercises are most successful for stress incontinence and mixed incontinence, but may be of value to those with urge incontinence. 30-40 per day. We can do these in many different positions: sitting, standing, lying down – and no one will know what we’re doing!

At first, just hold and squeeze our muscles for a second or two. Then gradually build it up to 10 seconds. Repeat as often we can, building up to 10 repetitions.

There is also – Contrelle Activegard – have samples at home, but haven’t tried yet. Also a Swedish product.

Contrelle ® Activgard is made from soft molded plastic foam. It either seen or felt. When saturated with ordinary water, it will not absorb the secretion of mucous. Toileting performed normally without continence cushion/arc needs to be extracted.
Contrelle ® Activgard use 16 hours a day. Continence cushion/arc  are available in three sizes. You should carefully test out which size fits best. – Free in Sweden (text: ww.contrelle.se/contrelle)

Plus I got help of a blue balance cushion of soft plastic filled with air. Perfect for balancing exercises and coordination training, stand, sit or lie on it! Provides a unique training of balance and ensuring the interaction of the muscles. Smooth surface on one side and other side rough, make it possible to massage the feet too. The pad also provides good back support – my stomach muscles has gone stronger and that’s the muscle that keep pelvic floor straighter. DYNAIR is the name – comes from Germany. Coast about £30.

Incontinence get worst when we are stressed – and with my mum not that well … it’s makes my problems worst.

After my operation – my bladder and brain didn’t talk to each other for about 8 weeks – so I had to keep an eye on the watch – 3 hours and it was time. It worked fine – the leakage didn’t start until 8 months after my treatment was done.

My problem has made my life as a woman shirk – and mentally it tears on me – that when I go out – walking, going to the gym or dancing Zumba .. I’m not able to everything I to the extend I want to do it, but I’m not shy about it. Also if I leave the house I have make sure I have towels and change of  knickers with me.

 Maybe – this post is not everybody’s interest and taste – but maybe I reach out to somebody with the same problem like me – that suffers in silence. What ever it’s not our fault, but we have to live with it.

“President Kennedy: Congratulations. How do you feel?
Forrest Gump: I gotta pee.”

Photos provided by; coloplast.se / spoki.lv / active-medical.com / niornasfoto.blogspot.com / incontinencerecovery.com /contrelle.se / varsam.se / bookerbunch.posterous.com / cartoonstock.com

20 thoughts on “60% gets it … 80% suffers in silence; incontinence

    • Thanks, Wendy … a bit surprised that so few “liked” it because it’s something that can happen to us all – one day not a problem – next day a massive problem. Maybe it’s because people don’t know how to handle posts about things like this – uncomfortable. Think it’s very important that we share the “demons” too. Thank you so much for your appreciation – went straight into my software.

    • Thank you … there is so many out there in both sexes that suffers from this – and never talk about it – terrible – all because they are embarrassed about it. It helps so much to be open about it.

    • Thank you … there is so many out there in both sexes that suffers from this – and never talk about it – terrible – all because they are embarrassed about it. It helps so much to be open about it.

      • I agree, Wivi. You’re right! Because the false notion caused by our society, most of our folks opt to suffer and keep their battle to themselves. Rather than being brave to share their exact situation, in that way they get the appropriate help they needed.

      • I think it’s just down to embarrassment – over here in Sweden we get so much help .. got a medicine by name Hiprex that slows down the bladder a bit – even if it’s for my prevent me from the urine infections.

      • I think that’s one of my medical issues right now. I’m just waiting for results of my examinations. Because I’m maintaing a lot of meds for my migraine (classic) and bleeding ulcer, the medicines damaged my liver and the bladder too. 😞

      • Wov … doesn’t sound that great .. liver especially – bladder problems are not the funniest thing – but liver is serious. Hope the results are not going to through everything around for you – how can they give medicine that damage such vital organs.

      • i know, id probably sue my former doctor. thats why I’m taking the meds he gave me, I’ve been getting worst nausea ever, and felt like vomiting, even if took them after meals.

      • During my chemo I was so nauseous – but I never throw up – but there wasn’t a day I didn’t want to pack it in … but I forced myself to eat, just like you have to do if seasick and it helps. Terrible – but we get through it – don’t ask me how ??? *smile a lot had to do with the team at the hospital that dragged me through it.

      • i hate my body. I’m 39, but my health is for a 65 years old. I had to stop yoga, because Im too weak, especially those past weeks i couldn’t eat.

      • My God …. please, don’t give up the life you have … just try – I know how it’s to have a half life – but don’t give into the demons in your body. Easier said and done, but I know that you will be able too. take it step by step – just do a little bit at the time.

  1. im not scared of death, wivi. to me its a given fact, we would all get there: ashes to ashes, dust to dust. Honestly, all I wanted to make sure, are my kids future. I wanna make sure, that even if I am gone, they would live comfortably. I am ready to face my creator anytime, coz I’m living fair and square. i rather lay rest 6-feet down under than to live in pain. whats hard is that with so many issues I’m dealing with my body, the medicines are contradicting with each other, and i end up suffering.

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