Sacral nerve stimulation therapy for bowel and bladder problems
My name is Faye. I have hypermobile EDS. In 2016 I started having issues with my bladder. I was having episodes of retention requiring catheterisation and frequent urine infections. As well as the bladder, I was having issues with my bowels and constipation. After many visits to A & E and the GP, I was referred to my local hospital. I saw a consultant who did a few basic scans which came back as inconclusive. I was then referred to the incontinence nurse.
We discussed my issues and we tried things like bladder and bowel training, medication. After these techniques failed, we discussed trying to ease the constipation. This involved me being trained to do bowel irrigation to see if this would help my bladder. I tried a few bowel irrigation systems like Peristeen®, IryPump®. Due to EDS and having difficulties hand pumping, funding was agreed to get an electric system called Navina Smart which was approved. After doing this for quite a while and bladder issues not improving, I had another discussion with the consultant. The only option in their eyes was a stoma bag and urostomy for my bladder.
At the age of 36 I was refusing to have this done. I got talking to a friend from a weekly local support group who put me in touch with a specialist at Newcastle Freeman Hospital. I asked for a patient choice referral to be done. Within a week of referral I had an appointment with the specialist consultant. After a long consultation with him, he openly said I should have seen him two years ago. He ordered a special test to be done called urodynamics. After this test, on the same day, I had a very long chat with my consultant. He said I had functional outlet obstruction both in my bladder and bowel. He said that I was to self-catheterise for the short term. He also said that I would be a candidate for a sacral nerve stimulator (also called sacral neuromodulation*).
So, I had training with a nurse for self-catheterization and to discuss the sacral nerve stimulator. In order to get a sacral nerve stimulator, my consultant had to prove to the medical board that it would work so that funding for a permanent one could be approved. This meant having a temporary device fitted first and carefully monitoring how I got on with it. The external device was fitted under a general anaesthetic and wires were inserted to the nerves and attached to the external box.
Managing bladder and gynaecological problems
Dr Vik Khullar, Consultant Urogynaecologist, spoke at our 2017 residential conference about managing bladder and gynaecological problems in EDS. During the presentation he talks about typical bladder and gynaecological symptoms that EDS patients may experience and references specific cases.Watch the presentation
I had two 2-week trials: one in May and one in October, with the device removed after each. The only downside of these trials was not being able to have a bath or shower for two weeks. In the first trial my consultant concentrated on the nerves for my bladder. I had to record everything I drank and measure everything when I went to the loo. The results for the first trial were unbelievable and I was going to the loo without catherization, also only doing my bowel irrigation every other day instead of every day. For the second trial my consultant targeted both my bowel and bladder and this time, I was going to the loo naturally for both.
After the trials it was very difficult mentally and physically going back to what I had before them. I was put on the waiting list for a permanent sacral nerve stimulator which could take five months due my consultant putting a case to the NHS health board to get funding.
My appointment came in February 2019 to have the operation to fit the permanent stimulator. It all went well. My consultant manged to get four wires onto the nerves. But I had to wait a month before turning it on due to infection prevention and allowing my body to get over the operation. After turning the device on after a month, I was taught how to use the handsets, which is just like using a phone. I have had my device in a year now and I can say it has given me my life back. Before, we were unable to go abroad or go far from home due to the issues I had. Last summer, we went to France for three weeks. It’s been amazing. To anybody having these issues – don’t give up on looking for options to fix them.
*Some bladder and/or bowel problems can be caused by problems in the communication between the brain and bladder or bowel (through nerves). Sacral nerve stimulation or sacral neuromodulation therapy overcomes these communication problems and can relieve symptoms. As with all therapies, it is not suitable for everyone.