Rhi’s Story
Women’s Stories is a collection of REAL women talking about their journey with MASIC.
In 2008 I was pregnant with my first child and was induced after going over 40 weeks. My community midwife had previously expressed concerns about the size of my baby and I had a late growth scan. I still went ahead with a vaginal delivery. Labour ended in an emergency forceps as my son had turned coming down the delivery canal and got his head stuck in my pelvis. After birth, my son’s head size was on the 91st centile.
In the delivery room, I was repaired as a second-degree tear. I remained an inpatient for a week after the birth after needing a blood transfusion and still feeling too unwell to go home. On discharge, I was totally urinary and faecally incontinent. At that point, I couldn’t even tell when I needed to go it just happened.
Due to ongoing issues, I had a referral back to gynaecology and a further referral to pelvic health physio. The physio helped my urinary incontinence to just stress incontinence when exercising but it did not help my faecal urgency. I had less than one minute hold time. Diagnosis of a grade 2 rectocele and cystocele partly explained the pain I was still feeling.
It wasn’t just my physical health that was affected. I suffered from PND and flashbacks after the delivery. MY GP was amazing and prescribed anti-depressants and eventually a crisis referral to the community mental health team when the situation got worse. I was unable to bond with my son; I did not feel like his Mum and thought he deserved better than me.
I am talking about my poor mental health because that was what my faecal incontinence was blamed on because I was only a second degree tear.
I walked away from the gynaecologists and lived for four years with faecal urgency and incontinence. In that time I had a second child and still didn’t ask for help in case I was wasting their time. Eventually, after 5 years I sought help from my GP to get a second opinion. I should have gone earlier. In 2014, 6 years after my first delivery, an endoanal ultrasound showed a missed third-degree tear affecting my external and internal sphincters. All this time I had something physically wrong with me that had been missed.
The diagnosis was a huge turning point because it meant I could get help managing my symptoms by diet, medication like bulking agents and Imodium, bowel irrigation and biofeedback to try and increase the strength of my sphincter muscle. Unfortunately, the biofeedback did not improve my muscle tone and because of the length of time since the injury I was advised not to try a surgical repair in case, it made my symptoms worse rather than better.
OASI IMPACT
Toilets have ruled my life. Where they are, how many there are likely to be, is there a disabled toilet with a sink available? Are women queueing? Next time you’re out and use a public toilet think about a time trial to understand what it’s like to live with faecal urgency. After one minute see where you are. Have you made it? Or are you finishing your walk having already been? How many people are around you and have they guessed? Have you got your children with you so you have to keep them safe and hide your clean up attempts?
In the post-COVID world and its impact on public toilet accessibility, it is an even bigger daily problem for many OASI mothers.
Incontinence puts a strain on your relationships. Neither my husband or I saw the lifestyle we ended up with after delivery. Both of us pictured a return home proudly showing off our new baby. Birth injuries and incontinence just weren’t thought of or planned for. And he deals with it too. My mood swings when I have a bad day with the incontinence, my unfair anger that he is fitter than he’s ever been and I’m not. We will always be eternally grateful our son was born unharmed and safely but I don’t think it’s wrong that both of us wish I had been properly repaired in the delivery room.
Other relationships suffer. I cancel a lot of activities, with feeble excuses because I still don’t tell people the real reason. After a while, you drift apart and the invites inevitably stop.
Up until this point, I have concentrated on faecal incontinence but actually, I can’t hold wind either. Coughing, sneezing, running, even getting up from the sofa risk passing wind with no control over it or awareness I will even do it. It’s embarrassing. People have moved away from me in the gym when on the treadmill, my son laughs at me constantly for farting if I run up the stairs.
In January 2020 I had a two-week trial to see if I was a suitable candidate for an SNS device. Sacral Nerve Stimulation or Sacral Neuro Modulation is a pacemaker fitted with wires that run alongside the sacral nerve the controls the bowel. It is used as a surgical treatment for faecal incontinence. This was my best option.
The trial was successful and later that year I was fortunate to be fitted with a permanent implant.
If I don’t have any medical problems that mean it needs to be removed. I will have a piece of metal about the size of a £2 coin in my upper buttock for good.
It is actually bittersweet weirdly. I have recently spent far too long looking back at the last 12 years and the days out cut short or cancelled, holidays dominated by toilets and irrigation equipment and the fact I had to give up work. I can now be the Mum I always assumed I would be, able to leave the house at a moments notice and not planning activities around toilets.
My labour and delivery lasted 15 hours. My incontinence nearly 12 years. I will always have a “what if” hanging over me. With my SNS I look back at the last few years and wonder how I did it. I may have relief from my OASI symptoms at the moment, but many don’t.
