Mums help mums network members stories

Katrina Heyman
Hi ladies, my name is Katrina I have 3 children and decided I had to much time on my hands so have undertaken an access to nursing course with the intention of starting my Mental health nurse training in September. For my course I have to undertake a research project and I am doing this on PND. As a sufferer myself I find it is very much the forgotten mental illness so I am on a mission to try and collect some info and present on it" eeekkkk

Anyway this is where you come in, could I possibly ask that if you have given birth to 2 or more times could you take a few moments out of your hectic day and fill in my survey.

https://www.surveymonkey.com/s/58K7GBV

thank you very much xxx
Research Project - Post Natal Depression Survey
www.surveymonkey.com

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Pamela Jarman
Hi, not really sure how to start this.
14 /15 years ago I was pregnant 8 months into it I had eclampsia. The hospital did not know, they thought it was meningitis when in fact I had an intracerebral hemorrhage. Which today has left me with no frontal right lobe and titanium plates in my skull.
My daughter was delivered emergency C-section, she will be 15 this year her only problem is a hole in her left eardrum.
Looking back I can smile at moments, one of my favourite's is, my daughter had learnt to walk before I did.
In 1997 they knew very little about what the brain damage had done, so I was just left. I had lost the use of my left side which slowly came back. Today I am receiving the after care I should have had all those years ago.
Depression ruled my life for many years, still does but not as much as it did.
I felt cheated as I have very little memory of pregnancy, no labour, never any chance of having another child. I bonded fairly late with my daughter but today we have made up for anything we may have been cheated out of having, as my daughter is also one of my best friends.
Some days I can be fighting fit I feel as though I am getting stronger by the hour.
It has been a long hard struggle to get where I am today with my beautiful family. It was worth the fight to get here even though on the bad days back then I couldn't see any happiness or hope, I am glad a hung on.
My horrible experiences have taught me lots of lessons and coping methods in life. When I got to the other side, I learnt it had enhanced my tools to support friends in need with empathy and experience.
There is light at the end of the tunnel.
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Lisa Booth
Hello people, thought I'd share some of my story with you - I have two beautiful daughters but when I was pregnant with my first daughter I was diagnosed with depression. I never took anything out on my baby, just on me. I was my worst critic and the first one to blame myself at the slightest thing. The doctor threw pills at me, but I opted for counselling and found it helpful. Four years on, my new found therapy is once a week, getting together with my best girlfriends and sharing what we all feel and getting it off your chest. I have found this to be the most liberating and truthful form of therapy SO utilise your friends. They will tell you the truth, be honest with you and be there when you need them, and try to be a bit kinder to yourself cos if anyone else spoke to you the way YOU spoke to yourself some days, you'd punch them in the face x x x

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Michelle Shaftoe
Hello :)
I am chelle. I am mum to Jamie aged 7, Sophie aged 4 and Alex, aged 18 months. Jamie is very accident prone (just like his mum!), Sophie was dairy intolerant for a year of her life and suffered severe and constant chest infections when she was a baby. She was hospitalised at 18 months for suspected bronchitis. She was even tested for cystic fibrosis, but to this day, even though it has all cleared up for some reason, none of the docs and paediatricians we saw could give us any answers as to why she was getting them!! We were also told she might never walk as her feet and legs were twisted. Thankfully she proved them wrong and is now a normal 4 yr old girl. Albeit with no concept of sshhhh lol. Alex has Duane Syndrome in his right eye. it is normally in the left eye, so he is in the 20% i think it is who have it in the right. we think he may have a touch of it in his left but we arent sure. He cant move his right eye outwards at all and up and down are limited. He has another check up on monday next week, so we will know more then! I live in a little village in what seems like the middle of nowhere because neither my husband or i can drive! I dont go out much as I have mild CFS. I know thats probably not an excuse, but its good enough for me :)

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Samantha Hall
My son was born with bilateral congenital talipees equinaverius (aka Clubfoot). It was picked up in my 20 week scan but i was told it was only a positional form of clubfoot (meaning it was just the way he was resting in my womb) and all he would need was physio when he was born. Needless to say i still cried my heart out for days and felt helpless. When he was born we were prepared for the worse and it was a good job as it turned out to be a more severe case of talipees and was a genetic form and that any other children i have can be born with the same condition. His feet were completely twisted inwards and folded in half.
From 3 days old Alexander had both his legs placed in plaster casts from his hips to his toes to stretch out the ligaments in his feet, and these were replaced once every week by Alder Hey to manipulate his feet into a normal postion. He had an operation at 8 weeks old to cut his achilies heel to lower his heel back into the pad on his foot and was finally freed from his casts at 12 weeks old. The most distressing part out of all of this was having to pin down a young baby for all this to take place and it took 4 of us in total as he was a strong little bugger.
After the casts his feet were then placed in little white boots and held at a certain angle with a metal bar between the two so his leg movements were still limited. this had to be worn day and night for 3 months.
Now he is 9 months old his boots and bar still have to be worn of a night time and will be till hes 4 years old.

The good thing about this all taken place whilst he is so young is that he doesnt know any better and it hasnt slowed his development at all. He is crawling around and is dying to walk but hasnt yet got his balance but he will get there and very soon will be running circles around me. He is spoilt rotten and in 6 weeks will have a little sister... and before you think it, yes i am mad.... lol xxx

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Melissa Burton
Hi to everyone out there, to help jo on her way with the amazing idea I thought id give it ago and share my experience. I became pregnant at the age of 19 it was definitely a major shock for me and my partner (who has 3 children to a previous relationship) as we hadn't been together very long at all. My pregnancy was a good one, hardly put much weight on, no aches and pains the only major for me was being very sick all day everyday till I gave birth. I thought I was prepared for her arrival mentally and physically, I'd had the nursery finished from 8 months everything put in its place just waiting for her arrival but nothing and nobody warns you to the mental changes that can happen to you afterwards. After giving birth to a beautiful healthy little girl everything was good for a couple of weeks, then life seemed to become about making everyone else happy, Christmas was on its way and things were not going very well with access to the other children, which seemed to take over our lives, meeting with solicitors and so on to try and satisfy everyone but at this point my baby was only 2-3 weeks, the madness continued for months after 8 weeks I was back at work and just one thing after another started to happen and I felt exhausted! Within 6 months I had changed into a monster!! My relationship had broken down, I'd lost contact with all my friend due to just feeling so low, they would txt and phone and I'd just ignore them. something inside just didn't want to speak to anyone but really I needed them. After months and months of going worse and worse I new I had a problem but one I just didn't want to admit as it made me feel like a failure! I took it all out on the only person who was close to me my partner, I'd physically attack him, fly at him kicking and punching, tell him to leave then go mad when he did, he couldn't do anything right! At my lowest point I tried to take an overdose and not just once I had gone to breaking point and dragged my partner with me, he couldn't cope with any more! Finally I decided to admit I needed help. I went to the doctorsand they prescribed me with anti depressants after a few weeks I started to feel myself again it does take time but they do work. Within 6 months I was off them and I have never been happier, I would never got through this without the support from my family and partner most of all he was my rock!! This is why I think this is a fab idea if more people can share experience women out there now will be able to see they are not on there own. It can happen to you even when you least expect, speaking to people who are going through the same thing would have been a great help. You dont get given the advice or opportunity, it's ok the health visitors saying you'll be ok but they are not in the same situation. I've always known about post natal depression but never thought it would happen to me. I've got through it now like so many other strong women and could not be happier a gorgeous daughter and a absolutely fabulous fiancé more people need to speak out so women know they are not on there own hope this helps someone xxx
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Connor

I was a few weeks of turning 21 when Connor was born. Too young really to become a mother but at the time I was in a long term relationship, had a full time job and we owned our own home. I felt confident that although I would be a young mum we would be in a good position to manage.

At 33 weeks pregnant, early one morning my waters broke unexpectedly but I did not go into labour. I went to hospital to be checked out and was told that I would need to remain in hospital until I gave birth during which time I would be monitored to ensure that the baby was ok. I was given steroid injections to mature the baby’s lungs should I deliver prematurely, but the plan was to try and rest and avoid a premature delivery.

A week later I went into labour and Connor was born into a delivery suite with a full crash team present. He was whisked away immediately to the special care unit without even the chance for a look, let alone a hold. That night whilst we were coming to terms with the whirlwind of his delivery we were taken to see him and given a photo. This was a completely different experience to Seth’s delivery as although Connor was born and taken immediately away from me this was due to his prematurely and I didn’t at the time remember being concerned.

The following morning whist I was alone and waiting for Connor’s dad to return to the hospital I was visited by an obstetrician who introduced herself then asked ‘what abnormalities do you know about?’ I was shell shocked, ‘none I replied’. She went on to explain in a heartless cold clinical manner that Connor’s spine had not developed normally, he had a number of missing and deformed vertebras, congenital scoliosis and spina bifida occulta. It was all so confusing we had never been informed of any problems during our ultra scans. I couldn’t understand how such a major thing could have been missed. She continued to explain that he had a heart murmur, only 1 kidney, a condition called hypospadias; only one nostril in his nose was open. They would need to send him to Alder Hey to have a MRI scan to see if he had been born with any congenital brain damage. As parents we were devastated. We couldn’t take it all in, you want your baby to be in good health and never had we anticipated or were we prepared for all the conflicting information we were then bombarded with, one doctor even told us that he may never walk.

Connor was sent for test after test and thankfully they all came back positive. His brain was normal, his kidney was functioning fine, the heart murmur was common in premature babies and it was hoped it would close in time. He would need corrective surgery for the hypospadias, and a nurse managed to pop the closed nostril open by accident putting a feeding tube up there!

At the time we were worried and frightened for Connor as there seemed to be so many different things wrong with him. I cried so much because at the time you can only focus on what the doctors are telling, it was so overwhelming and was hard to imagine what the future may hold.
Connor was genetically tested as were the immediate family and it revealed that Connor and some members of the family had a chromosome abnormality which was responsible for Connors problems. We began to see a genetics doctor to try and understand the implications of these findings and what that would mean for us and the other family members.

Connor stayed in hospital for approximately 6 weeks and eventually came home under the care of Alder Hey as an outpatient to be monitored.

I don’t know if it was the fact that Connor was premature, that maybe I didn’t bond as he had been in hospital for so long or whether it was coming to terms with his problems but I could not mange or function very well as being a mother of a baby. I struggled so much emotionally and felt a failure in every way at my inability to manage.

Connor was a hard baby and as I struggled on I felt more and more like a failure and a bad mother. He didn’t feed well and was chronically constipated. The doctors and health visitors were rubbish and just fobbed me off and being a young mum I did have the confidence to trust my instincts that there was a problem. At 12 weeks old Connor was taken into hospital for a double hernia repair as a result of his chronic constipation.

After the hernia repair I remember the surgeon coming to see us to explain that the repair had gone well however, whilst carrying out the operation they had discovered some further abnormalities which could indicate that Connor may be suffering from the condition Cystic fibrosis. It was horrific the next few weeks whilst more tests were carried out to ascertain whether or not Connor was suffering from this condition. I remember at that time friends trying to reassure us but all I could think was that my baby might die and there was nothing anyone could say to make me feel better. Thankfully the tests revealed that his lungs were healthy and he did not have this condition.

Over the years we have had many ups and downs with Connor like most families. He continued to be a weazy and sickly baby and eventually after 18 months of sleepless nights with him not being able to breath and constantly being sick the doctor confirmed he had asthma.

At 18 months Connor had the hypospadias corrected as he was frequently suffering from infections and had trouble passing urine. This was a horrible experience as he was older and more aware. I remember in particular after surgery when he was brought back to the ward him being hysterical and pulling all the cannulas and other wires from himself. He had a catheter temporarily and that also brought with it complications as he suffered excruciating bladder spasms. I would walk the corridors for hours with him in his pram looking at all the murals trying to take his mind of the pain. Recovery was slow and he had to have further surgery to remove a build up of scar tissue which again was preventing him from passing urine.

Regardless of any problems that Connor has suffered in the past he has grown and developed into a happy child who has engaged in all types of physical activities and have never just stayed on the side lines.







So long as he has been aware he has always had continued care from Alder Hey Children’s Hospital and for the past 11 years they have monitored his spine and tracked the growth and movement.

It was absolutely heart breaking this week to be told the devastating news that Connor now need to have surgery on his spine. He is to undertake some more testing and so long as nothing sinister is revealed he will be placed on the surgical list for a spinal fusion which currently stands at a 9 month wait.

Connor is very frightened and worried but I know that because of the massive support network Connor has we will get him through it.

I am so proud to be the mother of such an exceptional child and he truly is my Angel. Over the years he has never held back in life and I hope that following his surgery he will be able to continue to strive and succeed in everything.

Glossary / links for medical terms used

http://en.wikipedia.org/wiki/Hypospadias

http://en.wikipedia.org/wiki/Congenital_scoliosis

http://en.wikipedia.org/wiki/Spinal_fusion

http://en.wikipedia.org/wiki/Heart_murmur

http://en.wikipedia.org/wiki/Hernia

http://www.sonoworld.com/Fetus/page.aspx?id=112

http://en.wikipedia.org/wiki/Cystic_fibrosis

Bad week

Sorry about the lack of posts this week.

We have had a few bad days this week and received some bad news.

I will try and post later today.

For the time being keep sharing xxx

An Interview with my husband

So far all of my blogs have centered around my experiences but I am aware that my own depression affected all of my family and friends and that depression causes a ripple effect.

Throughout my depression my husband has been my rock, he has never faltered once no matter what has been thrown at us. He has remained strong and held our family together I honestly don’t know where I would be without him.

I wanted to know how my breakdown and depression has affected him and our family so I have asked him the following questions to try and understand the pressure he has been placed under and how he felt during my darkest times. The answers are unedited.

Q. How has my depression affected our family?

A. It broke us apart and made us stronger in the end, making us a stronger family unit.

Q. How does it feel to live with a depressive?

A. Anxious, I always worry and I’m conscious at the back of my mind how your feeling. I am always conscious about giving heavy criticism and how you will take it. I let things slide more than I would as I would not want to set you back

Q. How do you cope?

A Wine! By having a structured routine.

Q. What is the worst part of living with a depressive?

A. Seeing the lows and not being able to do anything about it. Worrying about how you are managing

Q. Are there any good parts of living with a depressive?

A. No - there are no good parts. But when you love someone as much as you do and you would do anything for them the depression doesn’t matter. I love you for you no matter what, depression is not an issue.

Q. How does it impact your life and needs?

A. It impacts me socially in the past in what I want to do i.e. going out, going the gym my interests and hobbies because you felt so isolated and lonely I try and spend as much time with you so you do not slip back.

Q. Are you able to anticipate a dip in my mood and the onset of my depression reoccurring

A. Yes, and I have in the past

Q. How did it feel to have me admitted to a psychiatric hospital as a result of my depression

A. At the time relieved, a huge burden of pressure was taken away but another huge one added worrying.

Q. Before you experienced my severe depression did you acknowledge depression as an actual illness?

A. No.

Q. Do you still worry about me and my depression reoccurring?

A. Yes

Q Are there any warning signs?

A. Lack of libido, crying, lack of passion for life, low tolerance, mood swings, crying, letting appearance go, just simple things like managing the house and chores. glazed look over my eyes as if I am distant from life.

Q Has there been a definitive turning point for me or has it been gradual

A. Yes, coming out of the hospital made you a stronger person. Gave you more confidence and taught you how to manage and become more self aware.

Q Do you think anti-depressants make a difference?

A. Yes with regards to controlling mood and helping you get on an even keel again.

Q. Before I experienced postnatal depression would you say that I have depressive periods.

A. No, but I didn’t know the signs. Now I can spot a depressed person in the street.

Q. In your opinion do you believe that depression is an actual illness or just an excuse?

A. It has been medically proven that depression is an illness caused by a chemical imbalance.

Q. When you hear the words mental illness what are you immediate thoughts?

A. My wife!

Q. Why do you think there is such a stigma attached to metal illness?

A. People do not know enough about it and automatically think of doctors in white coats , crazy people and criminals.

Q. Do you think that openly sharing your feelings makes a difference to mental

Health?

A. Yes 100% otherwise you will have the pressure cooker effect whereby all the emotions build up and up and eventually explode.

Pay it forward

I watched a film years ago called pay it forward, the idea was that you do a good deed for a stranger and instead of them thanking you they 'pay it forward' by doing a good thing for someone else, then they do the same for that personand so on it should continue to snow ball. It's an amazing idea and I recently came across a Facebook page promoting the same thing. You start of with a pay it forward wrist band and you do something for someone and give them the wrist band and they have do something for someone and pass the wristband on and so on.

It got me thinking, could we promote and encourage each other to 'pay it forward' with the Mums help mums network? My idea last week was for the Mums help mums network page to encourage users to share their experiences, thereby helping others to feel better or supported. It's amazing the difference you feel about things through just knowing that one person is feeling exactly the same as you. But is it possible to pay it forward by sharing the page? Would this count? We are kind of helping strangers by sharing, we are not doing it for any reasons other than to share and help someone else then the idea behind the page could be payed forward. If we did this we would not just be a small in numbers community, we could be world wide. We already have members in USA, Australia, India and Africa as well as in the UK. People are already paying it forward.

My personal experiences behind this idea have related mostly to My battle with depression and coping with family life. We as mums put ourselves under so much pressure of having to be so many different things (mum, wife, cleaner, sick nurse, PA, creative accountant plus try and work part time).

I have for years felt a failure. Thought that I was a bad mother cause I couldn't cope. I'd see other mums I knew who had more children than me, they seemed so perfect, not a hair out of place, not stressed, immaculately dressed, children clean and dressed normally, perfect behaved children, they'd be slim and just fabulous wifes baking cakes the perfect combination of yummy mummy and Nanny McPhee. Then I'd look at me. Seth no longer a baby - still struggling with the baby weight and some, my idea of personal grooming is a quick shower, teeth brushed, my hair is mad and the more crazed I am the madder my hair gets. I'm always running round at a million miles a hour, late most of the time, forgetful and istruggle to keep on top of the most basic chores at home.

Then someone said to me, 'your out of bed, the children are fed, dressed delivered to their respective school and nursery and your at work. You are not failing, you are fighting, and your doing ok and you've always had mad hair!' That made all the difference that one person saying it's ok, your doing alright.

So let's as a community try and 'pay it forward' this week. Any woman you know who feels inadequate or like she is failing or not managing. Tell them how well they are doing. They are not failing they are winning, they are strong because they are still getting up each day and having a damm good try at life.


Pay mums help mums network forward and see if we can go from just a page to a worldwide movement.

We may be small in numbers but we are international now

What a week this has been after months of thinking last week I took the plunge and started the Mums help mums network. The interest and kind comments have been amazing and I think it's all really helped me. I haven't stopped smiling with how much interest has been generated. Bad or sad things happen to us all at some time in our life but what I am trying to achieve is to use our own negatives and change them to positives by using the sharing of our own experiences to help and support one another. 1 in 5 mothers suffer from Postnatal depression and keep it to themselves. It is so difficult to ask for help or say out loud that you are struggling. I was the master of denial and facing my own depression but hope I'm over the worst now and more self aware to keep my mental health well. Hopefully the Mums help mums network page and my blog will helping someone.

The Priory

The Priory

When I had my breakdown I was fortunate enough that we had private health insurance the hospital I was admitted to was to be The Priory in Bartle just outside Preston.

The drive there on the day I was to be admitted felt like an out of body experience. We drove in almost silence for the journey apart from my occasional pleading that there was nothing wrong with me, I was fine, it was all just a misunderstanding.

The hospital was in the middle of nowhere, and as we approached the entrance it felt like we were going on a weekend break. The building looked like it was a Spa or luxury hotel. We parked up and walked around to the entrance. I wouldn’t let Kenny get my suitcase out of the car as I my mind if we took it in with us I was admitting that there was something wrong and that I would be staying. Even though my admission to a psychiatric hospital was imminent I was still suffering from a major case of denial.

We signed into reception and were given a brief tour of the building, we were shown the communal areas, which included a large conservatory with a pool table, games, TV DVD player and a seating area. At that time there were a lot of people in there, it was noisy and I remember feeling petrified and thinking to myself that I will never leave the safety of my room.

We made a coffee and were then taken to the “ward” and shown my room. It didn’t look like a ward, there were no heavy locked doors nor were there bars on the windows, it was a long nicely decorated hallway with could have been mistaken for any hotel corridor. There was a pantry room which was in effect a small kitchen, with a fridge, dishwasher, coffee machine, kettle and toaster, cutlery, plates, cups etc. There was fresh bread and biscuits and we could help ourselves to drinks whenever we wanted. We were shown to my room which would be number 3 for the time being, it was near to the nurses’ station and opposite the room which was used for medication time.

It was a lovely room lightly decorated very bright with a TV, dressing table, chair and a modern bathroom and shower with touch controls. I could almost pretend that it was a hotel room apart from the glass observation panel in the door brought me crashing down to earth. We were given some time alone and whilst Kenny was getting ready to leave I broke down. I started crying and pleading with him. “Please” I begged, “I don’t want to stay here, don’t go, take me with you” I cried. Kenny hugged and kissed me, told me he loved me and left.

Later that evening a member of staff brought my suitcase into my room and went through it with me and confiscated anything which I could potentially harm myself with which included my dressing gown belt, IPod ear phones, emergency essence and my wonderful Wife badge.

I would be checked by a member of stay at regular 15 minute intervals for the time being and this would include throughout the night. That night I was given my anti-depressants at 10pm together with sleeping tablets and anti-anxiety tablets I slept deeply that night but woke feeling groggy, heavy headed and very frightened.

I forced myself to get up, have a shower and get dressed and built up the confidence to leave my room and go downstairs for breakfast.

I ate little and quickly and escaped back to the safety of my room.

A member of staff came to my room to speak to me about the problems I had been encountering and I was told that after lunch I would start in group therapy sessions with the other resident patients who were having treatment for depression.

The majority of patients at the Priory in Preston were being treated for either general psychiatry (which covered depression, anxiety, stress, post traumatic stress, OCD, Bipolar disorders, attention deficit hyperactivity to name a few) or addiction, primarily the addiction patients were alcohol dependent.

These two categories of type of patients would later be known by myself and other patients as ‘the pissed off’s and pissed ups’.

I was given a timetable of therapy and was told that Monday to Friday 9.30am to 4pm I would have to take part in all the sessions. The sessions varied in topic. Some of the session would be for depression, anxiety, stress, emotions, self-esteem, personal development and art therapy. I would also see a psychiatrist one on one 3 times a week (this was known as the ward rounds) the doctor would monitor our progress and adapt our medications if need be.

I was dreading group sessions I really didn’t think it would be for me the whole ‘hello my name is Jo and I’m a fuck up’. But I had been admitted now and part of the treatment was to take place in all sessions so I had no choice. That afternoon and entered my first group session.

Being a resident / patient in a psychiatric hospital was kind of like being in big brother but without the cameras. You are put in a situation with strangers that you know nothing at all about and suddenly you have to share your life, honest innermost feelings that even your closest family and friends never knew. It was exhausting emotional and physically. The first session I didn’t really contribute but listened to others stories but would be expecting to contribute as it was all about talking therapy and sharing. When you are in such an intense full on situation and are sharing your private thoughts and feeling with others you quickly become very close to one another and we bonded quickly as a group and became very close to the other patients in my group and made some very good friends I remain in touch with to this day.

It’s funny when I first went to the Priory I didn’t want to be there but by the end of my 4 week stay I didn’t want to go home back to my life and reality.

I met some exceptional people, staff and patients and learnt a lot about myself.

The patients were from all walks of life, young old, professionals, everyday people, who all had one thing in common their inability to cope with life any longer.

I was extremely fortunate to be able to attend a private hospital. I do not think my experience would have been so positive had it been a different hospital. I say this not as a criticism of NHS units but I do think that the NHS units lack funding, the staff are over worked and stretched.

I experienced staff who could not do enough for me 24 hours a day there was a kind face and a listening ear. They just could not do enough. I am thankfully now for this experience as I think the counseling and therapy sessions I was offered were very intense and to have experienced this availability of services it may have take months if not years of therapy and prolonged depression.

I am not 100% but like to consider myself to be in recovery I not cured nor do I think I ever will be but I am having a bloody good try at life now.

Birth Injuries and a bionic bum!

Seth had been my second pregnancy so I was not so naive to think that labour would be easy – it’s called labour for a reason, because its hard work! However what I did not expect would be to sustain injuries to my body that would change my life and the way I would feel about myself.

The traumatic delivery of Seth resulted in me being left completely incontinent.

It was horrific and I cried constantly, I was only 29 and my body has been left in ruins, I told my midwife immediately of the problems I was experiencing and she arranged an appointment within days for me to see an obstetrician.

Because I had experienced an assisted delivery I had been given a episiotomy so I was given an internal (front and back) examination to ensure that the episiotomy had not been the cause of my problems but I was told that it was healing nicely and that my sphincter muscles where still intact. That it was probably just the trauma of the delivery and to give it time and I would eventually return to normal. She was very dismissive and unsympathetic it was horrible and I felt hopeless. I cried and cried in her office and she agreed to refer me for pelvic floor therapy. I started to have pelvic floor and bio feed therapy weekly but my pelvic floor muscles were none existent and I had also lost the sensation when I need to go to the toilet (for a poo) (sorry I know this is horrible to talk about, i'm still mortified writing about it).

I had no sensation what so ever when I needed to go to the toilet and would literally just poo myself at any time without warning. I had no muscle control or sensation so even if I thought I need to go to the toilet I had lost the ability to hold it in.

From December 2008 to about April 2009 I had weekly bio feed sessions but with no improvement. The physiotherapist was amazingly supportive but the experience was horrible it was mortifying. I was finally referred to a rectal surgeon. I had every test and examination under the sun. I would cry my eyes out when they were doing scans, ultra sounds, I had cameras, tubes all kinds of invasive exploratory procedures, it was so embarrassing and just mortifying.

Finally the surgeon confirmed to me that the muscle that controls the sensations from the bowel to the rectum has been paralysed and there was little that could be done. It was un-repairable. I cried and cried hysterically for days. I found it impossible to come to terms with. I was a young mum, not long married woman, how could this happen?

I couldn’t walk far from my home, couldn’t go out socially and became a hermit only leaving home if I absolutely had to. I began to withdraw completely from my friends and made excuses not to see people. I ignored my phone and wouldn’t answer the door to people. I kept the curtains shut at home so no one could look in and I hide from the world. I would take medication everyday that would stop me going to the toilet completely but that wasn’t ideal as obviously it is not meant for prolonged use. I had to wear pads constantly.

Trying to manage a baby, do the school run and basic everyday life was horrific as I still had no feelings whatsoever and no warning sign that I needed the loo.

Finally in July 2009 I was referred to another surgeon who confirmed he could help me. I could not believe it. He specialised in surgery of a device called a Sacral Nerve Stimulator which could be connected to the Sacral nerve. The devise gave off an electronic frequency 24 hours a day that would stimulate the nerve and could, if successful give back some sensation and a little warning.

I would be given surgery with a trial devise first for a two week period to see if it would help my condition. In August I had surgery for the temporary devise. For a two week period I had wires hanging out of a dressed wound in my lower back which attached to a box which controlled the stimulation and I would need to keep a bowel diary to record the success or lack of.

I couldn’t shower for two weeks, I could barely walk for a week but I didn’t care. It worked, not 100% all of the time but there was a faint feeling there and enough warning to give me chance to run to the toilet. I was over the moon. It was difficult to get used to the feeling in my body though as the devise gave off an electronic frequency 24 hours a day and would need to stay switched on. It was a cross between pins and needles and tapping and I could hear a buzzing in my ears (almost I imagine like tinnitus) again I didn’t care.

After two weeks the trial was a huge success giving me a 70% improvement on my condition.

My surgery for the permanent devise was scheduled for the October.

This time the devise would be connected to my sacral nerve, all wires would be internal and a battery running the unit would be implanted in my buttock! The battery life is 7 years so I would need surgery every 7 years for the devise to continue to work.

I was informed that it wasn’t always as successful as the trial and that it was trial and error tuning the devise into the best frequency, there was a risk of pain at the sight the devise could slip internally or twist and there was a chance of infections. I would also need to restrict the kinds of activities I did. I’m not meant to lift anything heavy, stretch, do any high impact exercise. A slip or fall could damage it and there was also the risk of the wires coming out internally. I would also need to carry a hand held remote to turn the devise on and off if needed (for example going through airport security as any high electronic frequency could affect the frequency in my devise) the remote also enables me to increase or reduce the frequency.

After surgery I was in a lot of pain and again could not walk for days. Sitting was painful and driving was a no no but my life was changed for the better.

I had surgery again in September 2010 as the battery had slipped and twisted leaving me in constant pain, I couldn’t sit properly, driving was very painful. I used to lie on my front on the sofa at home to watch the TV.

I have also has times when the frequency has been wrong or in the wrong nerve, once it was in my sciatic nerve causing excruciating pain from my back, buttock, down the back of my leg and into my foot causing my foot to contort.

I see a specialist stoma nurse about every six months but she also makes herself available if I do something silly like, heavy lifting over stretching, slipping on ice or trying belly dancing! I have messed my frequency up so many times but she has always been great. She has a massive master devise like a big radio and she tunes me in again.

I am so thankful that I was able to have this surgery, it has changed my life. Things will never be normal again but the improvements have let me lead a normal life again and start rebuilding my confidence.