Laura really wanted to share her story so that other women who have problems with rentention can know they’re not alone, and know how to find help. Reading her frank and at times devastating account of the first few weeks of her son’s life isn’t easy, especially as a health professional who can see where and when she’s been failed. I’ve been inspired by her resilience at a time where she should be enjoying motherhood. With persistence she’s making great progress, and I really do feel the future’s going to be fine.
Not being able to open your bladder, or going into “retention” can sometimes happen with childbirth. If it isn’t caught quickly the bladder can overfill, overstretch and become injured. Sometimes this leads to kidney injuries too. Not being able to go to the toilet at all can be quite dangerous for the bladder and kidneys, so people are often taught to drain their bladders with a small disposable catheter. However, the bladder’s a muscle like any other and with careful management of the whole of the pelvic region you can get more normal bladder function back.
I’ll let Laura tell you about what happened…
It’s harder in some ways to write things down as it makes things so much more real than I already know it is. I am the person that this has happened to; the risk that doctors tell you about (albeit when you’re exhausted during labour and don’t know whether you’re coming or going.) However, writing things down is easier in other ways: I could never say some of the things that I am able to write down aloud to myself or anyone else.
Luckily (or on occasions like this, unluckily), I’m a bit like an elephant: an elephant never forgets. On a positive note, I was able to remember enough to write it down. On not such a positive note, I was able to remember very specific details about my hospital stay: times, names and bays in the ward etc which would play on my mind continuously post birth.
It was my second appointment with Jilly that made me think about putting my thoughts down on paper. Never in my wildest dreams did I imagine that at the age of 31 I would be going to see a pelvic health physio but here I was sat in her room for nearly an hour and a half sharing the most intimate details of my life post baby – I now realise it was the best thing I could have done and wished I’d done it sooner.
My story starts here…Retention:
it’s a funny word. A word I only associated with positive things. I teach 10 year olds…I’m forever telling them to retain new information given to them, to help them in their learning, to stop them making the same mistake twice etc. I tell them that the more they can train their brain to retain information, the more they will learn…positive retention. I’d never heard of urinary retention which in my experience definitely wasn’t positive and something I would later encounter.
My pregnancy was amazing. I felt brilliant and looked fresh. I was tiny, fit and wasn’t restricted in any way shape or form. #winning. I hit 30 weeks to the day and developed pregnancy induced hypertension. As annoying as it was having repeated trips to triage, I didn’t mind because I felt great and baby was fine. It didn’t affect me physically which I will forever be grateful for. I was induced at 38+ 3 weeks because issues began to arise with the Doppler reading relating to the function of my placenta. I was in hospital for 4 days prior to delivery waiting for my waters to be broken which by all means wasn’t pleasant but that’s a story for another day.
My labour wasn’t horrendous. I had an epidural from 2cm because my blood pressure wouldn’t stabilise: bonus – I didn’t even have to beg for it! I dilated from 2-10cm in four hours and slept through the whole thing: double bonus. My baby’s hand was by his face and his fingers were resting on his ear so I was told I needed forceps. They told me about the risks…I had had 72 hours of no sleep so to be honest, was past caring at that point and just wanted the baby out, something I now wish I took more notice of. They took me to theatre (I would find out later that this is where there was a delay) and I was told that I have 3 pushes and if they fail, I would need an emergency c-section. Forceps were applied, an episiotomy was performed and on the second pull, Billy’s head was delivered followed immediately after by the rest of his body.
I was taken back to the ward with a catheter in situ following on from my instrumental delivery. I was told I had 6 hours once removed to pass urine: fine. I upped my fluid intake and waited until I needed to go. Off I went to the toilet….I couldn’t pass anything so I raised my concern to the midwife. She was absolutely lovely and not worried telling me to wait a bit longer. The 6 hour limit was nearing and I was worrying that I still couldn’t go. I put it down to the fact that I couldn’t concentrate: I was exhausted, I was having my blood pressure monitored constantly and Billy was having his blood sugars tested every hour because they were low due to my antihypertensive medication for blood pressure. At this point, I wasn’t worried and completely oblivious to what was to come. My priority now was to keep my new tiny human alive.
When the 6 hours was up, the midwife re-catheterised me and drained the urine giving me a further 6 hours to up my fluid intake and try again….success. After 4 hours, I managed to pass urine (400ml of it) but was completely panicked as I was totally incontinent. Reassuringly, the midwife told me this was really common and not to worry yet. If it was still the same the day after, she would inform the next midwife on shift. Nothing changed 24 hours later so as promised, my midwife informed the next in line (a not so friendly ‘more experienced’ midwife who was on shift in our bay.) During the second day after having my little boy, I told this new midwife that I kept wetting myself and then by the end of the day, I was finding it really difficult to void at all unless my bladder was completely full. She had very little time for me and made me feel like I was a complete inconvenience to her telling me that I was not her number one priority as she had 30 other women to look after. She completely dismissed my concerns and told me I was silly for expecting to be ‘normal’ down below after just having a baby, especially after forceps. And this, I truly believe, is where my problem started.
I was discharged home, having not been actually physically examined by a doctor. (I didn’t chase it up because I totally forgot about my own discharge after having to wait for the paediatric team to come and discharge my baby.) I would later find out that I was ‘e-discharged’ which basically means they have just ticked a box on the computer to say I am allowed to go home even though I had expressed concerns on the day I was discharged about how I could only pass urine when my bladder was completely full and it was taking a ridiculously long time to fill up.
By the time my own community midwife (who was absolutely fantastic throughout my pregnancy and who I put a lot of trust in) came to the house 48 hours after my discharge, I was unable to fully empty my bladder unless I was stood up, squatting over the toilet and pressing on my abdomen. I was mortified that I even had to share this information with her. She sent me straight back into hospital informing me that this was not normal, where I found I was in retention (holding urine in my bladder without being able to release it). When I got into the hospital, using a catheter, they drained 1500ml of urine. I would later find out than an average bladder feels ‘full’ at about 400ml.
So what does retention feel like? Well, for me, I didn’t realise how much urine I was holding. To be honest, it felt like I needed a really big poo. The pressure on my coccyx was horrendous and the only way to relieve it was to rock side to side and not sit down…for hours. As you can imagine, this was not great and I was terrified of going for a poo having just had my baby and having what felt like the biggest episiotomy scar and stitches going into my bum – something the hospital midwives never fully explained. That feeling was in fact a very full bladder putting lots of pressure on my pelvic floor, no poo needed.
Following my new diagnosis, the hospital then sent me home with an indwelling catheter (one that stays in) with no clear picture of any follow up. The medics didn’t know whether I was supposed to have a bag attached to my catheter or a flip flow which they couldn’t find anywhere in the hospital. I was quite frankly terrified, not only at the thought of being left with a catheter aged 31 but of serious infection because no one really seemed to know what they were talking about. My midwife arrived the next day and I just cried. She sat for nearly an hour on the phone chasing various departments to find out what the actual plan for me was and chasing a referral that had already been lost in the system 24 hours after being sent! She was told over the phone that I would have to wait 6 months for a trial without a catheter (TWOC)… 6 months! I was mortified so I cried some more. She informed me that the continence team would hopefully be in touch with me shortly.
Luckily, they rang the very same day and arranged to come and see me on the Monday to take my catheter out and show me how to self-catheterise. Before pregnancy, I never even knew that anyone could self-catheterise. Never had I imagined having to actually do it to myself up to ten times a day.
My emotions at this point were everywhere:
There was not a lot of support out there for retention. There was so much information about incontinence: something I felt jealous of and then horrendously guilty of all at the same time because I can only imagine how horrendous that must be too.
I spent hours feeling guilty that I was pitying myself having initially feeling like I would never have children after 2 miscarriages and knowing a handful of friends and family who struggled to even fall pregnant. Who was I to feel sorry for myself when at least I had a baby at the end of it, albeit without being able to pass urine afterwards?
Although I was lucky enough to love my baby right from the offset and feel that bond, I was paranoid that at some point I was going to develop postnatal depression. I was only 10 weeks postpartum and already, I couldn’t stop thinking about going back to work and how I didn’t want to. Not only because I had missed out on early bonding opportunities with my son and I felt like I was owed that but because I was now left self catheterising and was already planning how I was going to address that in work having specific times to pass urine being a teacher.
I spent hours during the day and the night rifling through the sequence of events that happened in the hospital just before my birth and shortly after. I was becoming increasingly frustrated with what didn’t happen and what should have happened even though I couldn’t change any of that. I was going through questions I should have asked any of the medics I came in contact with and things I wished I could change but couldn’t. I was constantly playing the ‘what if’ game in my head:
What if I didn’t have high blood pressure?
I wouldn’t have been in hospital on that weekend (apparently the busiest weekend of the year).
What if I didn’t go in with reduced movements?
They wouldn’t have suggested induction.
What if they had let me labour naturally?
It may have meant no forceps, therefore no trauma.
What if after birth, I was more aware of the amount of urine I should have been passing?
I never would have gone into retention in the way that I did.
What if I told a different midwife to the one I told?
(who said I needed to get a grip of myself and understand that I was going to be different, after all, I’d just given birth).
What if I had listened to my body and been more forceful with the staff in the hospital to express my concerns before my discharge?
The biggest what if…
What if I hadn’t have asked my community midwife for breast feeding support 48 hours after coming home?
I had by then managed to retain 1500ml of urine and had no idea about it because of nerve damage. This one terrified me the most.
After a very long weekend, the continence nurse arrived at my house. I can only describe her visit as a whistle stop tour around something which would potentially be for the rest of my life. She told me to lie on my bed and not to worry about my dignity because I had lost all of that anyway…thanks a lot! I was still heavily bleeding post child birth so was mortified when she shoved a mirror in front of me and told me to look down below so I could see where to insert the catheter. I hadn’t even contemplated looking at what I believed would be a car crash and have never had surgery of any kind leaving me with scars so was petrified about what I would see. I can say it wasn’t as bad as I thought but it definitely wasn’t pretty and I was left feeling rather light headed with none of the dignity I had left in reserve at all. After giving no sympathy whatsoever, lying down, she showed me how to open the catheters and insert them into my urethra. It wasn’t a pleasant experience to say the least but was successful and I was relieved that I would be able to pass urine on my own without having a catheter permanently in place. With that, she promptly left handing me a box of catheters, telling me that more would be arriving in the post and that if I needed and support, I could ring the team and they would be there to answer questions…this wasn’t exactly true…any of it. No catheters arrived in the post and I panicked. I had 11 catheters left and literally couldn’t pass urine without them, not even a drop. I phoned ‘for support’ as she had suggested and had to wait on the phone for a 5 minute long answer message to finish before speaking to a lady on reception telling me she wasn’t sure who I needed to speak to as there were a few nurses with the same name as mine…I was never given her surname. Eventually after crying down the phone and the receptionist clearly hearing my newborn crying at the same time, she conveniently found the nurse I needed. I was told by my nurse that unfortunately, deliveries don’t come on the weekend so if I needed more catheters, my partner would have to take a 31 mile round trip to the hospital to go and collect them for me! It is a basic human need: to pass urine and I felt like I was being denied it. I hadn’t spent any time on my own with my newborn since being home and I was forced into it while my partner made his way to the hospital.
A few days into using the catheters, I felt like I had a urine infection so contacted the continence team, waiting for the 5 minute answerphone and the argument with the receptionist to get through to the nurse I needed. She told me that I should reduce my fluid intake so that I wasn’t needing to go to the toilet as much: horrendous advice considering I was a new mother to a week old baby. My health visitor, midwife and GP had all agreed that this advice should not be followed having actually contracted a UTI because I had tried to reduce my fluid intake.
I lasted 10 days using intermittent self-catheterisation (ISC).
I contacted the continence team again and waited for the 5 minute answerphone message to finish again to have to explain my situation again and have to cry again to get through to the nurse I needed. I told her that I could only catheterise lying down. Every time I tried sitting down or standing up and inserting the catheters, I was in agony and felt like I kept hitting a brick wall. Her response was just to tell me that it was unfortunate but if that was the case, then that was my only option. I was literally housebound. I begged her to put the indwelling catheter back in. Her response was the most clinical I had heard to date…. “You are more likely to get a urine infection with an in-dwelling catheter. ISC is the preferred method to use.” Yep! Thanks for that. It might be preferred but I was sure if she was having to pass a tube into a tiny hole approximately 10 times a day, it would not be the preferred method. I ensured her that it was what I wanted as there was no clear picture as to when this was going to get sorted and I couldn’t continue to care for my baby and self-catheterise. There were moments where I had to make the decision between tending to my crying baby or using ISC and leaving him scream. It was horrendous to say the least. My head was all over the place…I was toying with the idea of continuing to self-catheterise but it affecting me mentally and physically stopping me spending time with my baby or having a catheter reinserted and potentially causing more damage. As far as I was concerned, it was a lose-lose situation. Ultimately, I decided to make the sacrifice and potentially have an indwelling catheter for the rest of my life. Fantastic.
The nurse then told me that she had made an ‘urgent’ referral to the gynae team but when I asked her how long that would take, she told me I would have to ring the department myself and chase it up: something I would become very familiar with doing. I waited for a few days for the referral to reach them and called them myself asking about the wait time for an appointment. We were heading towards Christmas so I knew ideally, I needed to get seen before. The department informed me that they hadn’t received the referral. I rang the continence team back and went through the regular rigmarole of getting through to my nurse. By this point, she was quite clearly fed up with me nagging and told me that she had dictated the ‘urgent’ referral but the office have 10 days to actually write it and send it off. When I queried this and said how awful it was that this was considered urgent and would take 10 days to even write, she quite bluntly told me it was their policy. Tough luck essentially. So I waited. And waited some more.
I phoned the gynae department again and they said that they had received my urgent referral and the average wait time was 6 weeks but because 6 weeks fell on Christmas Day and 7 weeks fell on New Years Day, it would likely be 8-10 weeks instead. I was devastated. I would have to endure Christmas and New Year with my brand new family with a catheter in situ and still no clear plan as to whether this would ever improve. At this point, I hadn’t even actually been examined by anyone to check there was nothing sinister going on. I was left to Dr Google which we all know doesn’t really leave you with the most positive outlook. As far as I was concerned, I had cervical cancer because after clicking on links within links and then some more links, this was one of the symptoms…not being able to pass urine or urgency.
That’s when I decided to go private. I phoned and asked my GP to refer me to the private urologist, which she did. I got my letter through the post…17th January would be my initial consultation….17th January! We were only at the end of November. I felt completely hopeless.
Along came two of my closest friends…one a GP and one an anaesthetist. I hadn’t originally told them about all of my trauma as we don’t often talk shop about personal things but when they arrived at my house to visit my baby, it was quite clear that I wasn’t the happiest person after giving birth to someone I’d been longing for since I was in my twenties. I gave them the lowdown on what was happening and when one of them asked me who was dealing with it, I completely broke down and said “everyone but no one.” They were really helpful and told me to leave it with them. I told them how horrendous it was using ISC and they couldn’t believe that I wasn’t even offered any lubrication to help with the process.
Shortly after their visit, they got in touch to see if I would be happy for my details to be passed onto their friend who worked at the hospital I frequented as a consultant obstetrician/gynaecologist. Of course I was ecstatic. She very kindly agreed to see me in the ward where she worked the following Friday. I was practically skipping to the hospital at this point feeling super happy that finally I was actually getting to see a doctor! She was absolutely lovely and actually examined me (still with a catheter in situ) and reassured me that I didn’t have a pelvic organ prolapse, something that I had also self-diagnosed, or cancer. She told me that she had seen this before and it was likely that because I had a delayed second stage of labour (I didn’t know this at the time), it was more likely that which had put pressure on my pelvic floor. This lovely doctor managed to phone herself and get me an appointment with a consultant urogynae on the 17th December….before Christmas, woo.
That date came. I went to the hospital after leaving my little boy again for another appointment. He was running an hour a half late: something I wouldn’t have minded had the appointment been useful. I sat there for the whole of 5 minutes, where he told me there was nothing he could do at present because I still had a catheter and there was no point even examining me. He gave me 3 days worth of Tamsulosin: a drug used for men with prostate problems and no research based on women but reassured me that it was to relax the neck of my bladder: not that I even knew my bladder had a neck! I was to come back in a few days for a TWOC. I was told that if I was still in this situation in a couple of months, he might investigate in surgery. Might. He also told me that it could well be permanent and unfortunately there would be nothing they could do not even surgery. I drove home in a ridiculous state and couldn’t speak when I saw my partner, parents and sister…all who were waiting for my arrival. The only take home message I got from that appointment was ‘permanent’.
A few days passed, I went back to the hospital. I had a telephone call in the meantime offering me an appointment for the TWOC with the continence team but I passed on that opportunity after having no support from them whatsoever and decided to go back to the doctor I met through my friends. The nurse on her ward was lovely and removed my catheter. The 6 hour time limit began again: it was like being back where I started after giving birth to my son. I drank and drank some more. I felt like I really needed to pass urine…this was a positive as this hadn’t happened as yet. I went to the toilet and sat there waiting. I waited and waited but could not go so I drank some more. I tried again and took a book with me but still couldn’t go. The nurse gave me a catheter and told me to use it to drain what was there as the TWOC was clearly failed. The catheters they had in the hospital were not like mine at home that I had used initially. The ones at home were quite thin and had a bag attached to them. These ones in the hospital were much thicker and had no bag so I would have to try and insert it and catch it in a bedpan…bearing in mind that I could only catheterise lying down. Fortunately, my mum was with me and unfortunately for her, she was the catcher. I released all of the 800ml I was holding…not good. I was sent home with more catheters and told I was to go back to ISC and wait for another week and more medication. I was very upset at the thought of going back to using ISC. Something I found vert painful and impractical, particularly over Christmas.
I arrived again a week later and failed that TWOC too. I saw a doctor who wasn’t in the least bit sympathetic when I told him I was really scared of continuing to self-catheterise again. He said it was the most ideal way. Again, I’m sure it wouldn’t be ideal if it were him having to do it. He told me that an urgent referral would be made or the original one chased up for the gynae. When I asked how long that would take, he said he couldn’t tell me as it wasn’t as if it was a cancer referral..thanks a lot! So now I was waiting for a cystoscopy: an investigative procedure to see what was going on.
Christmas came and went and to be honest, it was a massive blur of crying and pain. I managed to get a cancellation appointment at the beginning of January with the private urologist where I had hoped I would get a few more answers and at the least, a bit more time.
The appointment was quite a disappointment. He basically told me that unfortunately, he couldn’t just buy me a new bladder and it was just a ‘wait and see’ kind of game. I was told it could be up to 12 months before I would see a difference…it was just getting worse as far as I was concerned. He said he could try me on some medication which would stop the urge to pass urine so much but then retracted that statement when I questioned him and stated that surely that would make things worse…I would inevitably go into retention again if I didn’t have the urge to pass urine. The only other option he left me with was a referral to the pelvic health physio in the private hospital or a referral to the NHS. I opted for the private because the hospital had already failed to refer me for physio prior to my discharge after having the baby. I had little or no hope in the private physio but it was the only option I had left. The urologist told me he could send the referral to the physio department which was only in the building next door or I could take it myself and they would book an appointment there and then. I chose the latter. My experience with referral letters was not a positive one and I couldn’t bare anymore waiting around for letters and dates with possible losses of paperwork along the way. I walked over and booked an appointment for the following week. I was dreading it but forced myself to leave my baby again and attend.
And that was when I went to the first appointment I had had since having my baby 9 weeks previous that I left smiling. I met Jilly.
I told her all about my birth experience and my symptoms. She told me that she would need to examine me but spent a lot of time talking beforehand, asking lots of questions and reassuring me that physio should not hurt and if it does, she stops. She also assured me that she did not need to use a speculum…one of the reasons I didn’t want to go to the appointment. She carried out the internal examination (the most detailed internal I had ever had) and to be honest, at that point, I didn’t care. I just wanted answers.
In all honesty, I can’t even really remember exactly what she said at my first appointment. I was so uptight, anxious and upset at the service I had received so far. What I do remember though is actually feeling like everything I was saying was completely valid and that this wasn’t something that she hadn’t seen before. Jilly was fantastic, so positive and reassured me from the offset, that even if we (we being a key word, helping me feel instantly supported) couldn’t get back to being completely normal, I would be in a much better place than I was with my bladder at that moment. She made me feel like she was doing this with me rather than to me which was a complete change to everyone else I had encountered in the health service so far. She taught me how to do pelvic floor exercises properly and told me to order a bladder stimulator. She joked and said not to take it out in public but to use it in the house: it essentially sounds like a vibrator but helps stimulate the bladder and tells it to pass urine. She was just so normal and didn’t make me feel embarrassed at all. I was to come back the following week. Finally, someone was listening to me and taking me seriously without expecting me to just wait for years on end to see whether it was permanent.
At some point between my second and third appointment, I had emailed Jilly to say I was unsure and really worried about going for the cystoscopy that I had finally had a date for because it could potentially cause more damage than I had already started with. She reassured me that it was important to have it done but to talk to the hospital and tell them how I was feeling. So I went ahead, had the cystoscopy and the result was that there was nerve damage but there was no telling how long it would take to recover, if it would recover. I was to wait up to 18 months, with no apparent follow up from the consultant to see whether the damage was permanent. Fantastic.
Following on from my first appointment with Jilly and the cystoscopy, I had begun to pass small amounts of urine but was still voiding more using ISC. She assured me that this was normal and it would be a long process but we would get there. She used the analogy of a sprained ankle and told me that I wouldn’t have expected that to have healed yet so to apply the same theory to my bladder. At some point (all dates are a blur nowadays), I had stopped being able to pass urine again so booked an appointment with Jilly in absolute panic. I walked in, clearly uptight and explained what was happening. She was so calm and her exact words were “I am not flappable; this has not made me flap. It can happen and there are many reasons for it but it is fixable. Your body has done it before and it will do it again.” I was reassured an I actually left not panicking. She put a plan in place and I left ready to continue using the bladder stimulator and to order a vaginal probe (essentially a TENS machine for your vagina!)
I went back to her again and she showed me how to use the probe and told me how often: 20 minutes a day. It wasn’t the most pleasant thing to have to do but I was prepared to do literally anything to get my bladder back into shape. I used the probe for a week, took it back to Jilly who reprogrammed it and added an extra 10 minute workout. Things were looking up. It was now March and I was passing more naturally than I was using ISC. #winning.
I left my 5th appointment feeling even more positive than my first having being reassured by Jilly that I could email her any time with any questions or even if I was just having a bad week. This appointment was more like a counselling session than anything else. I told her about my worries for my next pregnancy and she reassured me giving me advice at the same time about looking at my options and sharing my worries with the hospitals, potentially going to a different hospital than I had been to. I felt like this woman was not just a physio but a life coach too! During this appointment, she gave me exercises to do to sort my tummy out: something else I was quite insecure about post baby. I had asked for this in one of my first appointments but rightly so and ever the professional, she prioritised for me (clearly unable to do it myself) and told me that we needed to sort out the crisis point first (my bladder) before worrying about anything else.
So where am I now? I am still using ISC on a daily basis but have reduced the amount of times I need to use it. Instead of using it every 2 hours, I am using it on every other void after 4 hours. I will continue to use it first thing in the morning and last thing at night and I am ok with that. I am hopeful that with Jilly’s help, this will get better and I can help myself in the process…I am willing to do whatever it takes. I don’t know how long my journey will take but what I do know is that I will have all the support I need through my family, friends and the one professional that I trust…the pelvic health physio!
Jilly is not like all of the other medical professionals I have met to date (total generalisation I know.) She tells you in plain English without the need to patronise, doesn’t sugarcoat anything but is the most optimistic person ever and explains everything so that you understand. She makes you feel like you can ask her anything…she is not shockable! Going to her appointments is something that I actually look forward to.
So, my advice to you is that if you have anything, literally anything that isn’t ‘normal’ downstairs to book an appointment with Jilly. It can literally change your life.
Keen to know more about how to put all this together? Come and join me on a Happy Bladder Course – dates are up for 2019 in the UK and Ireland. And for my #BladderHeroes (previous participants of the course) there’ll be a few dedicated #BrainPhysio courses in April. Keep your eyes peeled in the Facebook group!