You know from previous patient focused blogs how articulate my patients have been when writing their contributions – and today is no exception. This lady (we will know her as Mrs L) was pretty distressed when I first saw her- and for a typical reason. She had committed to extensive gynae surgery to help prolapse and urinary incontinence but when she got out from hospital she had significant urinary leakage and dyspareunia and was shocked and dismayed with this outcome. I asked her to write down her story because this scenario can be pretty common and it will give heart to women and encourage them to seek help if things are not going to plan. It also does point out the value of seeing a continence and women’s health physio pre-operatively (and perhaps especially buy my first book –Pelvic Floor Recovery- Physiotherapy for Gynaecological Repair Surgery) to learn the strategies to implement if there are some post-op complications.
I am 67 years of age, have 2 children in their 30’s, and had previously had a stress incontinence sling procedure carried out 17 years ago to solve quite significant bladder leakage. Following that operation I was a new person for a number of years, but slowly the problem started to return. My mother who resides in a nursing home is incontinent, and as I didn’t want to follow in her shoes, I decided to get the problem investigated again.
I visited a doctor who identified that I had a vaginal prolapse problem but also wanted me to undergo a bladder test to ascertain the behaviour of the bladder and obtain a diagnosis for urinary symptoms. This process was completed, however I never saw a copy of the report.  I believe it indicated that I required full gynaecological repair surgery, plus taping of the bladder. I was very willing to undergo this surgery and signed the related consent forms. Although the consent form stated that there was a risk of incontinence of urine following the surgery, I didn’t think for a moment that was related to me as I was supposedly having my bladder fixed. Another risk identified was pain during sexual intercourse. The specialist did not discuss either of these risks with me specifically, however did ask if I was sexually active which I replied yes to, and I was told the repair of the vagina wouldn’t be made too tight. Therefore I basically sailed into this surgery thinking everything would be sweet!
Much to my horror, following the surgery I was almost completely incontinent. I had gone from wearing small thin panty liners to full sanitary pads. I had absolutely no muscle control and had also gone from getting up twice a night to go to the toilet, to getting up 5 or 6 times! I had become very emotional during this time as I was due to leave for a holiday in Europe in 5 weeks, so when my 6 week check was due, I took my daughter with me as I knew I would break down during the consultation.
During this consultation, the specialist read the urodynamic report to me, which did recommend the procedure I had just had. However the very last line said ‘that there was a slight possibility that I could have a hyper-sensitive bladder which may need to be addressed at a later date’. The specialist indicated that if that issue had been identified as a major problem initially, I would have had the hypersensitivity addressed prior to the surgery. What next then? See a continence and women’s health physiotherapist. It was hoped that I would end up with the same outcome, but just carry out the process in the reverse order to achieve a successful goal. Therefore I was then referred to Sue who has a special interest in pelvic floor dysfunction.
I had a consultation with Sue almost immediately and I have to say I left her surgery feeling about 5 years old – not 67!! There was so much I didn’t know – how to sit on the toilet properly to empty the bladder and also to pass a motion, correct general posture, draw up the pelvic floor, bracing exercises that needed to done continually during the day with increases in intra-abdominal pressure, giving away coffee (only to drink decaf), herb tea only, no artificial sweeteners (I used to have 3 per mug of coffee or tea).  Sue spent an enormous amount of time with me explaining exercises and reasons why, simplistic diagrams, use of models – I couldn’t believe how much I had learnt in such a short time. I had never had any of this explained to me in my life before.
At the same visit she also performed an internal examination, mainly testing that I was drawing up my pelvic floor correctly and breathing at the same time. At times when I wasn’t she trained me in the correct way. A considerable area of scar tissue was identified inside the entry to the vagina and Sue felt I may have difficulty with sexual intercourse. She suggested that I discuss with the specialist prescribing some local oestrogen pessaries to help soften the scar tissue. I have been using this medication since. Sue also suggested that if I did have trouble with sexual intercourse I could purchase a set of dilators from her to help desensitize and stretch the scar tissue (practice entering and exiting the vagina).  At 67 (married 43 years) I must admit I was shocked at this suggestion –  pretty much a taboo activity for my generation!!
I then went home and performed all the recommended pelvic floor exercises on a daily basis.  It was not a chore, many of these can be carried out during your normal days activities – standing at the bench, cleaning teeth, sitting in a chair.  I was still employed (now recently retired) but could still do many of these at work without anyone being aware – during phone calls and meetings are excellent opportunities.
I still had a problem – sexual intercourse! The scar tissue was reluctant to allow my husband’s penis to penetrate and it was very painful.  So the next move was to embarrassingly purchase the dilators – “boys toys” I jokingly call them.  I could see the funny side of all of this, so actually told a couple of close friends I was into “boys toys” – much hilarity all round!  I won’t elaborate on my daughters mirth!
My return visit to Sue showed an enormous improvement in every area.  I had kept a diary and was religiously only going to the toilet approx 5 times per day, I had almost zero leakage and didn’t require panty liners, let alone those dreadful sanitary pads. I was only getting up once per night, such an improvement.  I just cannot believe my progress in such a short period of time as I had got to the stage that I didn’t really believe these would work. I will be religiously doing the recommended exercises for the REST OF MY LIFE!
My problem with sexual intercourse has been reduced enormously (by approx 80%) and I’m sure within the next month or so will not be a problem at all.  Although this is an embarrassing area to discuss, after such a successful and happy marriage I did not want this aspect ruined.
So, tomorrow I am off to Europe!  I cannot believe such simple things have turned my life around so dramatically. Friends and my sisters who have been following my progress have also changed their ways – most are now doing the exercises, correct posture, sitting on the toilet correctly.  Most are probably afraid of being faced with the same consequences and deep down have a fear of ever having to use ‘boys toys’.
Tremendous thanks to my very brave patient, Mrs L. It isn’t easy writing about such things – especially when you know it’s going to be posted on the internet! But I know for sure her brave words (and amazingly comprehensive summary of her treatment plan…a very attentive, thorough patient!) will help many others who have a rocky post-op recovery. One of the most important statements in this story is that related to the consent form. Mrs L read it, signed it but didn’t for a moment imagine that it would relate to her.
It is very important to read your consent form and before you sign it understand that the things listed might actually happen! It will make you realize the enormity of what you are undertaking and give due attention to your preparation. The things that happen to your bladder with repair surgery are often not a result of bad surgical technique, the bladder just responds that way sometimes…..quite commonly in fact, which is one of the reasons I first wrote my book.
Most importantly Mrs L has contributed to breaking the silence associated with many aspects of women’s health and I and many other patients thank her for the time she has taken to write about her particular journey.
Another #pelvicmafia story!
ps Don’t forget to register for the free public talk on pregnancy and the pelvic floor or pass this flyer/blog on to someone who might benefit from it.