Hello new here, overactive bladder with gynae problems

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Just joined and thought I'd say hello. I have overactive bladder and have had problems for years; I take oxybutinin which was helping quite a lot but since I've been having some other gynae problems the incontinence has become much worse again in the last few weeks/months. I'm waiting for tests at the moment so hoping this will give me more idea what I can do long term but in the meantime, trying to adjust to dealing with the wetting accidents again sad and manage it as best I can. I mentioned my problems to a couple of close friends for the first time, before I'd never dared mention it I felt so ashamed about it, and have been really fortunate to have their understanding, it does help to deal with it if you can talk a little bit to someone close to you I think.

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12 Replies

  • Posted

    Hi Ginny,

    Great that you have shared this issue with your friends, you would be surprised how many people suffer from this problem, (men included).  

    I had this problem a few years ago, with a prolapsed womb, fibroids, cycsts. I ended up with  a Hysterectomy and a bladder op to correct a leaky valve that had collapsed. Thankfully I do not suffer from stress incontinence (leaking when sneezing, coughing), although, I do have a slight problem with overactive bladder if I drink too much coffee or alcohol  or hold on too long going to the loo.  My Gynecologist said, this is a very common problem with women in their 40s and 50s. You should not feel ashamed, its a taboo subject that people suffer in silence unfortunately. 😄 

     

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    • Posted

      Hi Sharon61299, thank you very much for your reply. It sounds as if it was a really hard time for you a few years ago with your operations. I'm sorry to hear that. It's true, from what I read it is so much more common than we would think, and it's only all the more upsetting not to dare to seek help. I am very fortunate to have an excellent GP at the moment who has been very supportive with both this and my other gynae issues. Today I got the letter through asking me to phone up to book the scan I need, so will call up tomorrow and I'm praying this will be quite soon.
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  • Posted

    Hi Ginny,

    Firstly don't feel ashamed!  It is good to talk to people who understand this horrible problem. I cannot take many of the Oxybutinin family so have had problems with side effects as well. I am still waiting to see if I can take Betmiga.

    I do hope your problems can be resolved soon, but please don't feel bad about yourself.

    Best of luck

    Pat

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    • Posted

      Hi Pat17497, thank you for your encouragement. I'm sorry to hear that the oxybutinin type drugs have not been right for you and I hope you may be able to take Betmiga and get better results. I have not heard of that one before.

      It really does help to have support and information in this forum and know we aren't alone. I had always been so anxious and upset about it that I wouldn't discuss it with anyone except the doctor (even though I've previously been a carer for elderly and disabled people, many of whom had incontinence, so I did know a bit about the issue). Until a friend told me one day that she leaks when she exercises and I then confided in her. Of course, it would never cross my mind to judge someone else who had incontinence and I saw that she did not judge me, so that did help.

      I hope things will get better for you too soon.

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  • Posted

    Just an update... I had my scan this week (had to have a full bladder for it so it was horrible trying to hang on enough, thank goodness it was first thing in the morning so they were not running late!). I'm waiting for the results to go through to the surgery, however the gynae specialist has asked me some detailed questions and history and is fairly sure it's endometriosis, she says it sounds as if it has grown across my bladder and this is causing a lot of the problems I'm having. So it could mean more investigations for this (the scan I had didn't show fibroids or anything, as far as I know, but I'm told it wouldn't show endometriosis). Still having substantial problems with leakage at the moment and not really used to having to wear heavier protection all the time sad but at least it's meaning things are more manageable at work and when I'm otherwise away from home smile
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  • Posted

    Hi Ginny

    At my current Uro-Gynae check-ups, they don't require a full bladder thank goodness.  I already explained to them that there was no way I could hold a 'full' bladder for 10 minutes, let alone an indeterminate wait in the waiting room.  In fact, I wouldn't have reached the hospital cry!!!  The only time my bladder gets more or less full is overnight when I'm lying down, but it lets me know at least twice during the night that I need to empty it.  When I stand up, I'm lucky to get to the bathroom without leaking!

    It had to be a full bladder for my very first appointment years ago, which as you say was horrible.  I was also strapped to a machine that turned you in different directions, and almost upside down, to see if you leaked.  Once you'd 'let go' at their command, they would insert a catheter to fill your bladder again.  It was all very embarrassing.  I was told at a current appointment that they don't do that now!

    I have a friend whose daughter has endometriosis and I think she is controlling it quite well.  She had a lot of pain and discomfort during her teens and early twenties but she didn't mention an overactive bladder.  I heard that it's difficult to get pregnant with this problem, but if it does happen, the endometriosis can improve.  How accurate this is, I have no idea, but my friend's daughter managed to give birth to a healthy baby, and she's had two more (I think) since. biggrin

    Good luck.  I hope the results of your scan are favourable and that there is something they can do to help.  There's nothing worse than not knowing what's wrong, unless it's the doctors telling you that you have to put up with it and take medication.

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    • Posted

      Thank you KathS. Glad you don't have to go through that for every appointment. They were helpful to me at my appointment, I explained about my problems on the phone so they booked me in at the time that they were least likely to be delayed and thankfully there wasn't a wait, I also went to the hospital early and drank what I needed to there so that I didn't have the stress of trying to hold on whilst I was travelling to the hospital. I was really worried that I would end up having an accident during the scan but fortunately I just leaked whilst she was doing it though I did end up wetting before I could get to the toilet after sad I also had a procedure a bit like yours at one of my first appointments a few years ago, where they measured the pressure in the bladder and had me move in different ways etc to see if I leaked, which was awful because it felt invasive and basically made me wet in front of someone. It's not nice and I'm sorry you had to go through that kind of thing too. But it was through that that I was diagnosed with overactive bladder so I suppose in some way it was worth going through it in my case.

      Hmm I know what you mean about the mornings after going through the night - I'm also likely to leak when I stand up in the morning / before getting to the bathroom even if I've 'held on' whilst lying down!

      I am very glad that your friend's daughter has been able to control her symptoms and had children, how wonderful smile smile . I hope she was able to get good advice and support for dealing with the endometriosis. Yes I know it does affect fertility - I don't yet know what exactly the case may be for me personally there though there are some other factors that could complicate this for me.

      I don't think overactive bladder is something everyone with endometriosis will get. I'm only starting to find out about it but I understand that whether the bladder is affected depends on where the endometriosis is - it can grow around the bladder which the doctor thinks has happened in my case, but it may not affect the bladder, or in bad cases it can get inside the bladder. I think sometimes it causes frequency/incontinence and I think sometimes difficulty passing urine though I'm not sure about the latter. I was diagnosed with overactive bladder anyway, before being diagnosed with endometriosis, so no doubt that is not helping, and I also have several other problems that contribute including a back injury, so there are several factors involved. 

      At the moment one of the hardest things to deal with as well as the pain is that I'm very suddenly leaking a lot with no / almost no warning, which is upsetting and makes me worry where it'll lead. I've had problems for several years. For quite a while I've had leaks with no warning but it was always just a small amount. Then I'd have urgency that was bad enough that unless I was very near a toilet I would end up wetting, but I still had the feeling of needing to go and at least a couple of minutes to try to get to the toilet. But now I'm often leaking a substantial amount as soon as I feel I need to go and during my period, it can suddenly happen without even feeling any need to go. I'll have really severe period pain and then suddenly wet. It's scary and as you say, not really having answers quite why it's happening makes it worse. sad I'm sorry to go on it's just scary...

      Thank you for your good wishes. I hope I'll be able to find out answers soon. And I hope that you are also getting some support and that something, medication or otherwise, is helping you at least a bit as well.

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  • Posted

    Hi Ginny

    Thanks for your reply and the explanation of endometriosis.  Although I knew a bit about the condition, I didn't really know it could grow in other places other than inside the uterus or understand how bad it was, but it sounds terrible, especially if it's growing around your bladder.

    As you say, one of the hardest things to deal with is the very sudden leaking with no warning, which I also find upsetting as you don't know whether it's going to stop or empty the bladder completely.  One good thing about this though, is that other people won't realise what's going on if you're wearing a thick pad unless the bladder empties fully.  You can't get away with the 'urge' one though (well I can't anyway).  It suddenly doubles me up and my legs cross to help stop the flow!  I daren't move at all until the 'urge' passes, which takes about 10-15 seconds, then I have to dash to the toilet right away leaking all the time (but better than a full gush which I've sometimes had if I've moved off too soon!

    Anyway, good luck with the endometriosis.  I do hope it doesn't continue growing any more and that you can get some relief through some sort of medication.  What medication though, I haven't a clue!

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    • Posted

      Thank you Kath. Yes I agree, with thick pads it's thankfully often only us ourselves that know what's happened, and that does mean it's more possible to get on with life. The only pads that cope with severe urge leaks for me are all in one 'diaper' styles and I do have to use those in some situations at the moment. I hate it but they enable me to get on with things without the constant upset of noticeably leaking. I know what you mean about leaking more if you move! For me especially it's bad going from sitting to standing up or lying to sitting/standing up, especially at the time of the month. It's horrible at work - if I feel the need to go when I'm sitting at the desk, as soon as I stand up I start to leak.

      Thank you - at the moment I've been told I have to take the pill before any more investigations will be possible. I really didn't want to do this but it seems I have to. It's frustrating because I've been told on the one hand it will need more investigation (eg laparoscopy) but on the other that they won't do it until I've taken the pill. Perhaps it will help a little bit, it's supposed to reduce the bleeding and pain, so I'll have to see. Thank you.

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    • Posted

      Oh Ginny...it's so "nice" (probably the wrong word!!) to know i'm not the only one in this situation, and to be able to talk openly about the fact we wear pads. I wear 2 at a time so that nothing can get out. I buy Always Ultra Night Times with wings for the back and Always Ultra Night Times without wings for the front!! It's costing me a fortune as i have to change probably 5 ir more times a day!! I always carry spare trousers/knickers in the boot of our car just in case. Our bathroom is downstairs so i tend to get lots of exercise during the night....36 steps to the loo up to 5 times a night!! The lack of sleep is driving me nuts!! I was interested to see that your leakage is worse during your time if the month....mine is as well but my bladder problems aren't connected to any gyneacological problem. 

      My husband has been great about all of this. I'm slowly going into detail about exactly what is involved with him. We've only been married 2 years so it's a lot for him to have to deal with. There's nothing i wouldn't tell him now although i'm sure he'd rather not know some of it!! Lol 

      Good luck with the medication....i hope it works for you. I had various tablets for a couple of years. They worked a tiny bit but mostly just dried my mouth out which was horrible. It was at that point they refered me to the hospital.

      Anyway thanks for letting me waffle on.

      I don't feel quite as "odd" now knowing there are other people out there x x

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  • Posted

    Oh Ginny i know exactly how you feel. I'm new on here.

    I'm quite open about my bladder problem but i find that people have no idea of what we're all going through. They think i just need to go to the toilet a lot. They thankfully have no idea about all the embarrassing hospital appointments. Like you said the indignity of wetting yourself in front of the nurse during the pressure test.The leaking. The having to be padded up all the time ( i carry spares in my car just in  case!) The lack of sleep...i'm up at least 4 times during the night!

    My husband finds it very distressing for me and is only just begining to get his head around it all. It impacts on every aspect of our lives. 

    I've had my catheter training (god i hope i don't need to use one!) and am due to have botox treatment on the 11th. Although i'm dreading it i can't wait. This silly taboo embarassing problem of ours really gets you down after a while doesn't it?

    Good luck with all your treatment

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    • Posted

      Thank you Helen. I know what you mean and I think that's a reason it can be so helpful to be able to share with others who are experiencing the same things. It really is exhausting. In a way I suppose that, if others don't know what we are going through, there is a little positive side in that it means that the extent of our problems aren't as obvious as we might often worry they are (eg even though I wear full pads, when I wet badly I worry other people know and I feel disgusted - but actually all that's usually noticeable to others is that I go to the toilet frequently). But it's so important to find understanding as well. Particularly with those very close to you like your husband. I imagine that it is a very sensitive issue. Personally I am not in a relationship and have not yet had to address how I'd approach sharing it with a partner. Ultimately he is caring and concerned for you...

      I am glad you have treatment coming up and really hope this makes a big difference and help for you.

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