Endometriosis UK
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Fed up!

Had operation in September to look inside and he said he found I have the retrograde menstruation and everything was stuck together. He put the coil in. When we saw him in the follow up clinic he was lovely. He said it was worst he'd seen in a long time. And thAt if he had that he wouldn't be able to work. Seen him few times since then. And this last time we saw him he was just going on and on at me saying that I should be going to work and that he would only give me the prostap injections if I go back to work ( like trying to bribe me) even though the injection did make me feel rough though.

I also have a catheter in cos I can't wee now since October. And had a cystospy but couldn't find anything. So gyneo dr says there is no reason why I can't wee (does he just think I have this Catheter for nothing I hate the thing) got infections all time.

So went to doc Monday night as I have temperature again hot and cold. Swollen glands. She got a urine sample and said it would be back today for when I saw her. So anyway I goes back today with mum to discuss what the gyneo dr had said about Work and even she said I can't work like this. Then can't remember how it started but we wondered if I cud go back for my hour and half a week shadowing my classes (swimming teacher and lifeguard) just so I get used to been back in the pool a bit. She said I wud still be off sick. But on sick not it say maybe be fit for work taking into account the following... Phased return to work. Then the sample she said sorry I didn't put ur name on it so it never got sent off. So I've done another sample but that won't come back till next week now. And tonight I've gone mad cos I can't go to work like this not well enough at all. When I've really thought. Mum says that's it I can't chanhe it now, it's my fault. And like tonight again I feel red hot then freezing swollen glands just general unwell.

Mum says ring her in morning to see if u can tlk to her or go back down and see her as she is on open surgery tomorrow morning. But how can I go again, it wud be the third time this week. And only just seen her today. Can anyone give me some advice please what shud I do? Sorry for long message.

P.s- also dr said today, wwhich is also something hospital doctor had put in his letter. About maybe I shud see psychologist to help me cope with the pain. I saI'd no way never. Cos isn't that where they think it's all in your head even when they have found something thou?

Thank you x

2 Replies

Okay lots of things going on here.

Firstly going to see the psychologist is NOT saying it is all in your head at all.

The psych can discuss with you ways you can help youself cope with the stress and the pains. Give you self hypnosis tips and other tricks for fooling your brain by distracting it from pain. Can be very effective and well worth learning about, so I wouldn't dismiss that at all infact would recommed it. It may not help- but then again it might be a great help and if not for now then for ill health in the future. It's a homeopathic way of dealing with pains. It sure won't make them worse.

Having a catheter to help you wee does need looking in to. Bladder Spsms stopping you peeing properly after surgery is quite common and most people recover in a few days or weeks. In my case it was 17 months before my bladder was suddenly able to work properly all by itself.

The electrical impulses that cause the heart to pump the chambers of the heart in the right order, or squeeze the food through the ever so long digestive system or pump the wee from the kidneys to the bladder and tell the brain when the bldder is full and tell your urethra to open up and pass the wee out, can all get knocked out of synch by surgery near to them.

In the bladder's case the mistimed signals really cause problems, telling you the bladder is full when it isn't and stops you peeing when it is. Well these can be helped by taking pills each day to relax the muscles until such time as the electrical signals suddenly fall back in to synch all by themselves and start processing again normally.

Having a catheter in is obviously not going to help in the UTI department and it could prevent the natural cycle of electrical impulses from getting back in to working order.

Have you tried coming off the catheter and on to tablets instead. The tablets can give you a degree of incontinence which means a few accidents or very hasty trips to the loo, but it is lot easier to cope with those than accommodating a catheter all the time and UTIs.

It is all too easy to become dependent on the catheter - and boy did I lurve having mine in, so I never had to get up to go pee, but long term you should be trying to ween your body off relying on it, if bladder spasms are the reason for the pee retention problems after surgery.

I am so pleased to be back to normal peeing again, by 17 months I had given up all hope but woke up one day and felt quite different down below - back to normal. It did take a few days more to get the bladder used to stretching and filling up again, as previously I had always enjoyed a large capacity bladder and not having to go pee more than twice a day, and I am nearly back there again - 3 to 4 times a day is good enough for me. Zero accidents nowadays too.

I would definitely recommend the pee pills to relax the muscles as the 1st step after catheter. Catheters themselves aside from encouraging infection can also cause injury to the waterworks.

I work in a school - and started just a year or so before the pee problems stopped. only a couple hours a day.

There were sudden trips to the loo and a few accidents too, so I carried spare trousers and pants with me just incase, always wore black trousers. I didn't use incontinence pants as I always went to the loo before work and at every opportunity between classes just to empty out and avoid accidents if possible. but incontinence pants are certainly an option for the many who work and cannot get to the loo so often.

Thousands and thousands of men and women work while having pee probs - you'd be surprised quite how many. Whether they have catheters or just pills to help them pee. Several of the teachers at my school all reported having pee problems in all their cases it was the result of pregnancies - so we would have a chuckle amongst ourselves when any of us had to make a dash for the loo.

Being on the pills to pee will keep your bladder flushing and should considerably reduce the chances of UTIs once any infection is cleared up.

The mirena should be on the verge of kicking in by now so there is no point at all having Prostap. If anything will make you so unwell you can't work it is Prostap so don't bother - it is totally un-necessary at this point in time, and will not do anything at all for the catheter issue either.

If you are on the Prostap already that would explain the hot and colds and not be any infection. The mirena coil too can have small side effects before it settles to work but they do tend to level off and you won't notice anything once the periods are well and truly stopped which as I said should be any week now.

I think you'd actually feel a lot better in yourself to get back to work an hour or two. Back in the busy world where there are distractions to what's happening with your body and phased return to work is a great bonus if your employer is willing to offer you that. It won't be easy, but it is a small challenge that will build up your confidence to be able to get doing things again, figuring out ways to work around your health problems without being too taxing on your energy levels.

Be brave and speak to the Doc about the pee pills. sooner rather than later. They are tiny things and not a problem to swallow.

I was on buscopan initially but they weren't working so well for me- then i was switched to Oxybutynin Hydrochloride and they were much more effective. There are quite a few to try if one doesn't work so well try a different one.

An a sneaky bonus - they stop you sweating - but they can cause a dry mouth- Have a drink by your bed at night because that's when you notice the dry mouth mostly, waking up having slept with you mouth open and lips a bit stuck to teeth ain't great, but a sip of water solves the problem.

Don't worry that they are mostly advertised for incontinence - they are just as effective for urinary retention too, which was my problem. Being on them did give me incontinence to some degree - but it's far far better to be able to pee than not be able to pee.

Very Best of Luck with your mission to get the bladder back working again. It will take a bit of effort and possibly some trial and error on the meds side of things - but I and many others are living proof that post op bladder retention can resolve itself eventually.


Hello, thank you for replying. I have been discharged from the urologist they said I'm better just been under one person rather than lots. So just under the gyni dr. I first started having problems With the water in August before operation. I had to push my tummy for it to come out. Then in October it stopped completely. So had to have this Catheter. It has been in Nd out a lot. As they are trying to teach me the intermittent self catheterization so I don't have to have one in all the time. But I'm just not getting the hang of it. With my catheter I don't have a bag on mine I have a flip flow which still makes my bladder fill normally then wen I need a wee I just go turn the tap on. I am on oxybutanin for the muscle spasms this Catheter is causing. Still can't go myself.

With the Work my job is very active been a lifeguard and swimming teacher. My classes I have lots of little ones and I'm in the water with them. It's hard work. I arnt ready to go back and I shouldn't have said yes about going to assist. I also have chronic fatigue syndrome so that is another thing. Just not well at all atm.

I've had the prostap before just over a year ago. And yes it did help with the pain but the side effects where bad. I'm not currently on that atm. Just got the coil in that's it. And still bleeding.

I should go back to see her this morning but don't know if I dare wen seen her twice already.

The other week when they send a sample off they lost it then this week they didn't put details on it...I don't think that's good enough really. Cos can't wait till afterweekend. I feel really rough and its hurting more up side of my back. Had rough night.

I have also been referred to the chronic pain team. Got a lletter the other day that I have to fill in. And I've said to Mum I'm not going there cos it says it's in the mental part of the hospital. And I'm not mental. I thought when he finally looked in aide me and found out what it was that wud be it great.

Do u think doc wud be mad seeing me agAin today?



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