Today I had my second telephone appointment with the physiotherapist from Women’s Health regarding my bladder problem. For more information, please see my earlier post here.
I had emailed my latest bladder diary to her in advance of the appointment. Iinitially she seemed to think things were improving but she noticed that I had a few large outputs on day 4, although she acknowledged that I do drink a lot. She said it wasn’t so much about the overall total each day, but how much I was voiding each time, and how much I was retaining. She did think things were getting a little bit better.
How this treatment will help
I asked her to recap on how this procedure will help me. She said we are trying to retrain the bladder. Normally they tell patients to try to hold it for longer, in order to decrease the frequency, but for me, because my bladder is holding such big volumes, we don’t want it to become overstretched, or it becomes a bit floppy, which makes it harder to empty. I asked if, in time, voiding more frequently might cause it to shrink back to a more normal size. She said yes, but she wasn’t entirely sure what had happened with my bladder as a result of the chemotherapy. I said that I didn’t think the bladder itself had been affected; it was more that nerve damage had interrupted the signals going to my brain that my bladder needed emptying. She agreed, and asked if I’d had radiotherapy. I said no; she said that can cause scarring of the bladder.
Muscle tone
I wondered whether there was any way of improving the tone of the bladder muscle. She said the muscle was called the detrusor muscle – an autonomic muscle that doesn’t work with any conscious control. I asked if that was similar to the peristalsis of the gut and she agreed that this was so. She said that in addition to the nerve damage, the detrusor may have become a bit zoned out by the chemo, in a similar way that peristalsis is slowed by opioid drugs. The more the detrusor is stretched, the longer it takes to go back. I explained that when I had a couple of massages in the past, I’d been told that I have low muscle tone, presumably from my ME, and I asked her if this could also affect the bladder muscle. She said that this might well be so. She said she was planning to ask me about the various operations I had had in the abdominal region, and we talked about the development of adhesions. I reminded her of my hernia repairs, and also my hysterectomy 25 years ago. She recommended visceral massage – massaging around the scar area, particularly in the bladder region, to soften up and mobilise the tissues, which keeps things moving and helps prevent adhesions. She recommended doing this daily. She said that if we were face-to-face she could demonstrate this, but described the procedure over the phone. I suggested that there might be some YouTube videos on it, and she said she had never looked it up; she said the osteopaths use this quite a lot, and there might well be something online.
Treatment
I am to keep on with the 2-hourly voids. If I get urgency in between, I am to go straight away – urgency is what we want, because the bladder is telling the brain that I need to void. If I get out of sync with the timing, it won’t do any harm to go again sooner, in order to remain on the 2-hourly schedule. I said that sticking to 8, 10, 12 o’clock etc. was helpful, rather than just going 2 hours after the previous voiding, because I often forget to keep my timer with me, and if I don’t hear it go off, I forget when I actually went last. She said what the purpose of the 2-hourly interval was really for when I don’t feel I need to go. What we want is to develop the feeling of urgency, to kick start the sensation of needing to void. By increasing the frequency of voiding, I was preventing the bladder from getting over-stretched, which could make the problem worse by causing more retention and making it even more difficult to empty fully. By training to go more frequently the bladder may eventually shrink, and I would kick-start the sensitivity so the brain will realise when the bladder is full.
Bladder scan
In addition to the work on the bladder from the inside by retraining the sensitivity, and from the outside with the massage, she recommends that I have a bladder scan just to make sure that I am properly emptying it. This should take place in the next 2-3 weeks. It’s an ultrasound scan – they give you a drink, and then scan you, and then you empty and they re-scan you. I said that presumably I would empty without straining, and then they would be able to see what I was retaining, which she confirmed was the case. The scan would also indicate how stretched the bladder had become. If I haven’t received a letter with a scan appointment during the next fortnight, I am to phone her to make another appointment with her. She would prefer to delay this until after the scan, but it’s not essential. In any case, she wants to see me in about three weeks’ time.
Continuing the bladder diary
I suggested that I went on keeping records just to see whether things were improving. She said that might be a good idea, but on second thoughts, it would be sufficient just to do another 4 day diary in the week before my next appointment with her, continuing to go every two hours, just to see what progress I’ve made. She said it was helpful receiving the bladder diary in advance of the appointment, and was grateful that I had sent it in advance this time.
Concluding discussion
I told her how grateful I was for the help, and that at the initial group session, I was doubtful that anything would be done to help me because I’ve got this permanent nerve damage, but since seeing her, I feel massively encouraged that I could actually get better. She was very pleased, and said in the 20 years of being a physio, she has noticed a huge change in their approach, from being 100 percent medical, and now having a much broader approach, including such things as massage. I told her that since my hysterectomy 25 years ago, I have noticed a huge difference in the approach, which is much less specialised, i.e. “it’s your bladder, or your bowel” etc., and now the approach is much more holistic, and that there is also much more emphasis on the mind-body connection. She agreed. I described the difference between the preparation for my hysterectomy and my colectomy – a couple of questions about my history, as opposed to a 2 ½ hr session going into every detail of my general health, stress levels etc. etc., and also the introduction of the enhanced recovery programme, with treatment being tailor-made for the individual to provide the most effective preparation and aftercare possible. She said it was helpful to hear this from someone on the receiving end – they talk about this amongst themselves as professionals, but it is good to hear that the knowledge is feeding down to the patients too.
I also added that I am blogging about this, and that although my online following is not large, it might help some people. I said that I urged them to seek help, and not get palmed off by their GPs and be told that they had to live with the problem. GPs do not have the specialist knowledge of the ancillary professionals such as physiotherapists and specialist nurses and do not always think to refer one on. They do not always know what is best on a day-to-day management basis either. I told her that in the initial days of my ME, I was worried about not being able to keep going on an upcoming holiday and that I told my GP that I was planning to get a wheelchair. Her response was very negative, saying, “Oh, we don’t like wheelchairs. People use them too much and then their legs don’t work.” I took no notice of this and went ahead anyway, and when I returned from holiday I reported back to her that it had been liberating, and it continued to enable me to do far more than I’d achieve without it. She took this on board, and when the time came to replace the wheelchair, which I had bought second-hand on Ebay, she did not argue, but was happy to refer me to the occupational therapist who linked me up with Wheelchair Services. I never had any problems with the physiotherapist or occupational therapist about the use of mobility aids because their emphasis is less on diagnosis and cure, and more on day-to-day management of a condition. Quite often, it is up to the patients to educate their doctors! Knowledge is power, and we need to be involved, and proactive in our treatments, and be our own advocates.
