I Cannot Let Myself Go Down That Path

Today my story is featured on ABC News Radio and News Online which both go national across Australia. This is my second time being interviewed by Giselle Watakama and she really makes it easy. She also has a magic way of pulling the secret stuff out of me. The stuff I try to cover up from the public, the people I know and often from my loved ones. She even manages to capture the quaver in my voice, because dammit I cannot hide that. Would if I could, truly.

I do not want my son or my lover to see me panting as my body tries to fill my ostomy bag. Panting as if I am birthing a hippopotamus. Because that is what it feels like. Pure agony for at least thirty minutes, often two hours  and exhaustion afterwards. And then there is the small matter of getting a bag to fit on my ostomy now. The mesh has sucked an area a bit like an inverted teacup beside my stoma. Right where the mesh is. And it is next to impossible to get a seal. So out of the myriad modern devices designed to make life easier for the modern ostomy I am left with an older version which does not seal and also the filter does not function well. Requiring me to ask friends if I stink. Because these days all I smell is poo.

Things are not all bad. As everyone knows I do not like to give in. And I am very stubborn and determined. And I like to advocate to help others who are injured and to try to stop others from becoming injured. While in hospital last week I met a really impressive Colo Rectal surgeon, Dr Peter Pockney who also teaches surgery at Newcastle University. And he is a member of my surgeon, Dr Brian Draganic’s team Newcastle Colorectal. I was impressed with his intelligent way of communicating. Dr Draganic also is very down to earth. I am hoping at some stage to talk to them about starting a mesh clinic up here at John Hunter Hospital. Or a Hernia Mesh Clinic as RPA has the Pelvic one. These two surgeons did not place my mesh. Presently I have started a support group on Facebook for Hernia Mesh injured. It is called Australian Hernia Mesh Support Group. We are gaining more members due to the radio interview on ABC today which is wonderful. People who do not usually use Facebook so I have given then my name and mailing address instead.

Some of the timeline of the article was a little bit out. So much for Giselle to sort through. Basically I had the mesh inserted in 2015, three years after my ostomy was formed. The photo above was taken after I got home from the mesh repair. Not knowing then I had a mesh infection, which is NOT considered to be a good thing in mesh circles.

So for most of early 2015 I was in and out of John Hunter with bowel obstructions. I was given emergency surgery in August 2015 for a Parastomal Hernia  and mesh was inserted. I have been much worse since, though not to the point of vomiting faeces but that is because I am so vigilant to not let the obstructions get to that point. But she is right. I do fear choking on faeces, because I did, for many many hours and even The NG  tube could not suck it all away. It was the only time in my life I wanted to run away and die somewhere where nobody could find me. Well I did once after I started looking after my demented parents in 2013 but I had just left my nasty husband and walked into the hell of Alzheimer’s. With a new stoma and a then undiagnosed Hernia.

So basically Giselle let me talk, and tried to make sense of what I said, with no medical training and my tendency to ramble she did a great job! What was even better for us Mesh campaigners and advocates was the info she came up with. We need these skills!  Basically the College of Surgeons are concerned about this Hernia mesh issue. It is so good to know that.

‘Anyway the article is here. I will leave you to read it, to absorb it, and to try to know that my life might sound awful but I do see the bigger picture. In my case I do not have Alzheimer’s. Whew. And I can still laugh at myself. My son is wonderful,  as are my friends. And I have a magical lover/partner who does not notice my bag, thinks I am brave and encourages me to not see myself as disabled. It is only when I try to walk that I feel disabled, and it is only brief. Cause I cannot let myself go down that path.

Finally I would like to thank the lovely Rosie and Marion of John Hunter’s new Acute Surgical Ward. Talk about wonderful nurses. Beyond wonderful. And then there was the delightful Rory, the resident from Belfast. And the canular technician called in who finally got a vein. Am covered in bruises. Little love bites to remind me of my stay.

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Much Loved and Safe

On This Day five years ago I had a really busy day in preparation for our move north. I decided to have my “After Suicide Attempt By Family Member Psychologist” session coffee beforehand so that I could get on with the many things I had yet to complete before our upcoming moving day.

Usually I sat in Westfield Bondi Junction food court with my face blotchy from crying through the whole session. I liked to try to get ahold of myself before getting the bus home. This time was the first time I did not cry through the whole session.  As a matter of fact I did not cry at all! I graduated, not in the usual way from a course but in that I completed all the things I needed to in my own mind.

I knew instinctively that we needed somewhere safe to stay, even temporarily, where we would be with people who loved us and knew us and wanted the best for us. Being in an unknown environment in the state my son and I were in would not help us heal, however we had to get away from the possibility of contact with D.

So straight after the session I boarded a bus to Maroubra to return the GPS monitoring device I had been given by Stay At Home Leaving Violence, an organisation that had supported us so freely and compassionately. J the Housing case worker was so happy to know where we were going however she counselled me against staying too long, she said I was in no state to be a carer, that I had to put myself first. She also reiterated her opinion that I would be very good at Advocacy work.

Five years later the Advocacy has become second nature, and about so much more than Domestic Violence. It is Dementia, Mesh, Ostomies and Women’s Surgical Issues. And I did stay longer, because though my need and my son’s need was great, my aged demented parent’s needs were so much greater. And one is gone now, and another in care, and both were, and are, much loved and safe.

There Goes My Open Mouthed Smile

Yesterday I had a tooth extracted. It had broken within weeks of moving up here and staying to look after my mum and dad five years ago. I had some kind of a reconstruction on that molar a few years before that but they told me it might not last. I was eating one of my son’s amazing chicken burgers when I got an excruciating pain in my top gum. I semi shrieked, luckily mum and dad had gone to bed already, or they would have called an ambulance. They knew I did not show pain unless something was wrong and an ambulance was their lifeline.

This was quick though, over with as long as I ate on the left side only. A few days later I got so fed up with the reconstruction flapping around and jolting me with pain when I forgot and ate on that side that I grabbed ahold of it and twisted. It really really hurt but I pulled it out. It seemed like half a tooth. No decay at all and I was left with a complete tooth on one side and nothing on the inside, with the gum sealed over it.

I could not afford either the time or the money that year to get my tooth fixed. My parents were a 24 hours a day, 7 days a week job then. And I was existing on a pension after my then husband locked our bank accounts down after I locked him out of our flat in Sydney due to his bizarre behaviours. Then there was the physical and mental exhaustion at the end of the day and also nobody to look after my parents while I went to the dentist or recovered from an extraction.

I ignored a lot of things that year including diabetes, however I would do it again in a second. My son was ill as well and developed Pericarditis, there was no time for me to be ill. One of us had to present a front to mum and dad that they were calm and in control of everything that could hurt or bother them. And that is what I did, though I did get on top of the diabetes later that year!

So yesterday I had my teeth cleaned, a molar filled and then a very difficult extraction. The tooth kept breaking and shooting off bits of tooth at high speed. My lovely dentist had to push my head to the left a lot to get at the tooth. Unfortunately I have Foraminal Cervical Stenosis on the left side. Quite severe too! When he finally got it out I was a bit shaky in the arms and my feet kept catching as I walked home. I sat down for a while on the way home and gradually covered the distance. Not sure how. Maybe the same way I coped with mum and dad in 2013. By simply putting one foot in front of the other and working towards the goal. In my case getting home and laying down. Chatting on Facebook to dear friends and in real life to my son C and my friend J. The two most important men in my life. And the most caring, considerate men that anyone could have the privilege of knowing. I have been rewarded over and over since moving up here by meeting wonderful people, deepening existing relationships and reconnecting with people I had lost contact with. All this aided by technology. Facebook, Messenger, Words With Friends and Texting. I could not have accomplished or indeed survived 2013 without these things.

I had quite a bad time with bleeding afterwards, it did not stop for some hours until J suggested small ice cubes. I then got to have a look at my mouth and face. Swollen and distorted from the hard physical work of removing something that just did not want to come out! And there goes my open mouthed smile for a while too! After next week I will have an up to date mouth, until I can afford implants and teeth whitening anyway. And then it is on to the long list of health things to address, and get on top of. Not just because I have people relying on me, but because I have people who love me, and I owe it to them to look after myself. And I owe it to myself too, I deserve to be as well as I can possibly be. We all do.

 

Ever Spreading Tendril

I had an appointment today with my dentist. As I was almost forty minutes early due to the strange timetables of Newcastle buses I popped into the coffee shop that I have had my eye on for a while.

Big mistake. Though the lovely Lisa the proprietor was well intentioned she is basically deluded. Anyone who thinks they can repair mesh damage, namely a drop foot, with antioxidants is totally out of their mind. And dangerous to the unknowing, the uninformed, the people finding their lives unendurable.

So good to know that her 80 year old husband who is twice her age is as fit as her. I mean would he dare be otherwise? I tried to explain it was not age related or arthritis related. And that my medications are a necessity not a foolish luxury like the antioxidants. But I know a lost cause when I see one.

I managed to get away and limped, trying not to dammit, to my dentist. Where I had a longish wait. Somehow, and am incredulous as to how this keeps happening, one of the receptionists told me she has a TVT (trans vaginal sling) and was very interested to hear how I became meshed up.

I was able to give her Professor Vancaillie’s name, explain everything to her and encourage her to get a 3D Trans Vaginal Ultrasound. As only around 20% of cases cause issues it is good to know if the mesh is still in position, and to get a referral to discuss options with a Urogynaecologist if needed.

She was very open, informed and intelligent. Asked me how my bladder surgery was done using my own tissue and also how the rectoceles were repaired also using my own tissue. So perhaps the situation with the unknowingly ignorant Lisa was meant to be? Or perhaps the Sisterhood is indeed an Entity, with many tendrils, spreading out around the world to share, to inform and to protect women from being mutilated, butchered and meshed up. I thank God, The Universe and The Sisterhood and am indeed humbled to be part of this ever twining tendril spreading around the world to release and protect fellow sisters from ignorance and cruelty.

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Fright

On This Day five years ago I had been up until late packing ready for our move away from Sydney. I had been packing British Crime DVDs which must have taken some time as I have so many. I started fasting at 2 am for a blood test and went to bed quite late so as to keep my son company, and also to see if I could sleep through so much of the morning that had been spent retching lately.

Once I awoke I was able to get dressed, though still retching, and make my way through the back alleys behind the shops in Randwick to Dr M who had been our family doctor since 2001. I was there right on opening time however there were three patients ahead of me. Typical! Usually this worked really well for me rather than getting tests done first thing in the morning. I chose a magazine and settled in to read after chatting with Eleni the receptionist who had become my lovely friend over the years.

Something made me look up and I got a literal shock as my ex was at the door about to come in. Our eyes locked and I realised what my son meant about ‘the look’ which terrified him. He stood there for some time with the most awful look on his face then he went away.

I was so frightened I started crying. In front of the then full room of female patients. Eleni came over and asked me what was the matter and I told her. She said she would ring me in future if he was there but it would not help if I was already here.

I went into the doctor and he easily took the blood and then I told him what had just happened. And that we had only been to court the day before and the AVO’s had been issued. He sat back and said this is a problem Kate. He said D cannot take change. He will not go to another doctor. That C and I would have to find another GP until we moved north or risk this happening again.

He had never seen me rattled before, even when I popped in to see him after I saw Professor Newstead the bowel surgeon to tell him I was having a Colostomy. Or when my surgery in 2000 went so badly wrong. He loved my pick myself up, dust myself off and get going attitude to life, so this was very hard for him too.

So that was another thing taken from us by this person we had supported for so long. My son’s and my own medical needs were very complex and required authorities for medications most GPs were not happy to write scripts for.

I left the surgery and started walking up High Street towards Brumby’s Bakery to get C some finger buns. As I approached the corner I saw my ex stand up and walk towards me from the direction of High Cross Park. He was sticking to the AVO literally by keeping 500 metres away from me. However I started having palpitations and became very panicky. No stopping in coffee shops for a break any more. I bought the finger buns and walked swiftly home.

The blood tests showed the palpitations I had thought were stress related was really my thyroid being over medicated and that I likely had diabetes. A great time to start with a new GP.

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How It All Began

Our son was born in 1984 at the Paddington Women’s Hospital which has now been converted and redeveloped into housing I believe. I had been in hospital for over a month with Pre Eclampsia. My blood pressure went extremely high one night and the decision to induce was made.

I had been under a Professor there since the mid seventies. We trusted and were confident that everything would go well. My bestie from school was coming after she finished her shift at POWCH. She is a maternity nurse and had been involved in lots of births so I was happy she would be there as my support person. Especially since my husband was a little squeamish and not much involved in the antenatal care etc.

I was transferred down to the maternity delivery area and very quickly induced by my waters being broken with something I described as a knitting needle being shoved up my vagina. And I love knitting. In fact I was totally obsessed with knitting back then! I was told later that it was more like a crochet hook!

All the nurses who worked with my friend (whom I had got to know very well over lunches in their staff room) agreed with her that nothing would be happening as it was a first birth and was going to take a while. So she arranged to come straight over at five pm. She did not make it in time because unfortunately when they put the drip in which causes the contractions I think someone must have sped it up by accident. It was going very fast. Within thirty minutes I had horrid backache. Was not dilated enough though so the nurses and Prof and Dr took off. It was an unusual day. High high volume of births. There were women in the corridors giving birth.

Three and a half hours later and our son was born. And almost strangled to death. The only help we had was early on. After I was given gas (which did not agree with me) and then an injection, the only person to help us was a young med student who had never witnessed a birth before. Luckily he was there and he managed to hold onto our son as my husband ran to get help.

They managed to get his cord from around his neck. It was very hard to hold for so long without pushing. His head was literally out and I had to stop pushing. Not sure if that had anything to do with my issues later. The whole delivery process certainly did though.

Within months I had bladder incontinence and also our son was very ill. He developed a Proptosis and was sent to a lot of specialists. He became so ill at nine months it was not known if he would be retarded or not. Because of the lack of support from family here (my friend had moved to Northern NSW so was unable to help) my husband decided we should go back to the UK to live.

Once over there I was tested by a Urodynamics team at a big London Hospital. They said my bladder had been dislodged by the birth. They suggested I wear the huge pads that old people wore in nursing homes. They would not operate to repair this as I was too young and might want other children.

During the next year our son became much better in that we knew he would not be retarded by the hundreds of Myoclonic Jerks he had daily…. however he became afflicted by severe head pain. Cluster migraines in a three year old are not very pleasant. I spent many a day with him laying across my lap with him putting my cold hands on his forehead bless him. I will not go on about that. It is his story and it’s still with him even now. He is on a disability pension and has been since he was fifteen when the school system basically gave up on him.

When he was four a different surgeon asked if I wanted more children. Due to our son’s illness. I said I could not put another child through it. So he scheduled a Hysterectomy and Burch Culposuspension to move my bladder and remove my uterus. It was an horrifically painful operation and especially so as it was in the days before PCA machines. After the surgery I was given a shot of Pethidine before doing anything so I was able to move.

The surgery was successful. I think I was in for about ten days. Once I returned home my husband went back to work and I looked after our son while I recovered. It was gruelling but I was young enough, 32, to recover quickly. Sex was better than it had been for a long time. Hard to keep my husband off me actually.

We returned to Australia a few years later when our son was in year one at infants school. In the early nineties we started working at the church we attended. High Anglican and just across the road from our son’s school. I had already been helping the Female Deacon with Scripture in the local schools and also with Sunday School so becoming Co Vergers seemed a logical move. Especially since my husband had always professed to want to train for the priesthood. In the end I actually was more suited to the Pastoral kind of work and my husband looked after the church. I looked after funerals during the week when he was at his other job.

The whole time we were there. Ten years, I had more and more trouble with incontinence. Bladder and bowel. I just loved taking scripture classes. There were so many needy children who loved and needed extra attention and love. They actually used to stop me in the street and introduce me to their mums. Who knew who I was apparently! However I was so nervous of having a bowel accident in class, of which I had many outside in the street, that I said I would have to give it up.

We were problem solvers so I ended up assisting our very first female Anglican priest. A young girl in her late twenties who was sure she had God’s ear. Or rather he was talking into her ear! She was sure she was not meant to marry and not to work with the ill or elderly. God told her so. I said I think God has different plans for you. I see you as a Chaplain. She laughed. No way.

During our ten years living and working at the church she met a divorced man and fell madly in love with him and married him. She was then basically not allowed to work within the church. And she became a Chaplain. At a huge hospital I attended. And she was and is brilliant at it!! We had many a laugh about her profession that she was called not to marry over coffee in the hospital canteen.

In 1999 I had a sudden gallbladder operation and then I went into surgery with the lovely Dr Eisenberg who was consulting with my then bowel surgeon, the late Dr Philip Douglas. I had been diagnosed with a rectocele and an enterocele by then. He pulled out during surgery after finding too many adhesions and also not knowing how to do a complicated surgery without shortening my vagina. He said I was too young for that.

My husband wanted me fixed. He liked me to be on top. He liked deep penetration. He like to go doggy. He liked to hurt me and he could not do that with two prolapses filling the vagina. He had always wanted anal sex and so he started that. Without lube. It was horrendously painful. Especially now that I know I had a weakness of the wall between vagina and rectum.

So the next year my GP sent me for a second opinion. A top surgeon Dr Andrew Korda at RPAH. And his colleague the wonderful Prof Michael Soloman. Dr Korda said I could not go on like that. He said the backache and bowel incontinence would get worse. That this would fix the structural problem and should hopefully help the rectal incontinence. Dr Soloman was not so sure. He said there was a colostomy in my future. Not too distant either.

The surgery was horrendous. The pain off the scale. I nearly went mad with it. I was a patient at the POW pain clinic then. Had been for some years for my spine. The glorious Dr Khor, whom I still communicate with by email and who insisted I make him one of my lush quilts, told me afterwards that it’s one of the most painful surgeries there is. I had the Posterior Repair done using my own tissue. No mesh which we now know to be causing so much trouble in women all over the world. Dr Korda folded over my vaginal tissue and sort of seamed it. All the way up. Not sure how long the vagina is cause it stretches. As a Quilter/designer I understand the mechanics of it. No mesh was fabulous but unfortunately the seam became a huge ridge which pressed even more on my rectum so my rectal incontinence became worse, much worse. Dr Korda felt or hoped it would settle down but unfortunately my husband decided he could not wait for the healing. He forced sex on me. While the stitches were still in there and while I was still in incredible pain in the wound. So much so that I could not sit on my right buttock for many many months that year.

All this was happening to the backdrop of the Sydney Olympics. Our son being told he would not have enough work in to sit his School Certificate. He was doing Distance Education by then as no school could cope with his absences due to his pain. He was well ahead of himself. Doing HSC level in year nine. But he was going to be short a few packages. So he pulled out of school and continued to educate himself with the help of the internet.

Our church was changing a lot of things around so after a family conference we decided to leave. My health was not good. Not after the surgery and my birthday present from my husband. A really nasty sexual assault. Number two but much worse. Well he thought he was wishing me a happy birthday. But I was crying and I inched myself backwards trying to get away from him until I was trapped between him and the wall. There was nowhere to go. I had cried and pushed him and pushed him and he did not notice, too involved in his personal pleasure. His pleasure involved my pain after the first few years of our marriage so this was nothing new. But I had an open wound. It really hurt already. Obviously no lube. My god the dryness. It hurt so much. There was blood everywhere. Stitches came out. It was in my mind a brutal rape. My therapist later said it was. She was disgusted by him. Did not really want me to discuss him. I have only told a few people and that is in the last few months.

He finished and pulled himself out of me and went to the bathroom. Very happy. When he came back I was doubled over in pain and crying. Trying to keep things quiet so our son did not hear anything. He asked what was wrong and I said I was bleeding and it hurt. He said oh it’s just not worth it. And stormed off. That was my birthday 2000. He never touched me again. Those brutal assaults were almost worth it. Except for the further damage they did.

So I am going to the surgeon on Thursday. No doctor has examined me for 17 years vaginally. It just hurt too much. But I need to get on with my life now that it is five years since I finally left “him.” I would like to experience penetration again. Not sure why but it was always my favourite part of sex. That gentle loving possession by another. I miss it. And the closeness. And would like to have some good, clean fun.

So am going to check if I need a reconstruction or just stretching with some sexy gadgets! I had similar to those through Professor Vancaille in 2000. But his ones gave electric type shocks through whole pelvic area. Not enjoyable at all. No fun.

I now have an incredible amount of scarring on anterior and posterior of vagina. Which is causing a lot of spontaneous orgasms. The ones in the middle of the night where I have a full bladder are excellent. Full on dream with being penetrated and made love to. Orgasm comes naturally and wakes me up and goes on and on. But the daytime one’s are really painful and I need them fixed somehow. I have read Botox can work on them. I also read these could have been made worse as I was sexually assaulted for many years as a child. Had many objects shoved up a very tiny passage. I can still feel the marbles she used to put up there that she made me hold onto. And the licking. I was less than eleven. It was from age seven years to eleven.

So I am going to be very frank with. $&$&$& on Thursday. I am told he is very very gentle. Which is great because last time I was examined it was agony. But that was a long long time ago, seventeen years. I am ready for this. The timing is right. The Small Fibre Neuropathy and Mesh pain is under control now using the nerve pain cocktail. I can handle this. So much so, I am going by myself. I am my own best support. I have always had to be. My son has been fabulous. But this is not something my son should be part of. He has enough on his plate with his own health. I know he will be thinking of me and wanting the best. He is very protective of me. Funny thing is if I get things working again he is going to be so embarrassed. Cause I will be sharing my sex ploits with him. As all mothers should. Not. We are very honest about these things. We can talk sex for hours. And I know one thing he was very hurt by with his father was that he did not take me up on my offer of having his own life many years ago. When I offered him his freedom after the surgery. My son lways thought this should be my time and there is a limited window now I am so old lol. That is me saying I am getting old, not him!

 

 

 

 

 

 

 

 

 

 

When I Wanted To Crawl Away And Quietly Die In A Ditch Somewhere

In September 2015 I almost died of a parastomal hernia which had been trapping my bowel over the previous six months or so. A Stoma for a colostomy, Ileostomy or Urostomy creates a weakness in the abdominal muscles when the stoma is formed

I had my Ostomy surgery in mid 2012. The day after my Mother In Law’s funeral. Almost immediately the stoma receded and I had immense trouble getting a system to fit. This is usually the first warning sign of a parastomal hernia. It look many months of the Stoma Nurse, my Ostomy Support Groups on Facebook and myself to brainstorm a solution. But it was never right

Over the next three years I had horrendous pain near the stoma. In 2015 I was in and out of hospital for bowel obstructions repeatedly. Having the dreaded Nasogastric tube inserted to decompress the bowel

August 2015 the long anticipated wedding of my best friend’s daughter arrived. My son and I stayed with his fiancé in Sydney and we feasted and had a wonderful time before and after the wedding

I had bought a special teal jersey dress which had an attached coat front as I was so conscious of my swollen tummy. But had no idea what was about to occur. A few days after the wedding I had a small really small fish burger my son cooked. And I belched before I had eaten more than a few bites. My son tried to get me to eat it but I just could not. The next day we returned north. Myself to Lake Macquarie and Chris to Wallsend

A few days later Chris and Gen came over as usual on a Saturday to help with my food shopping. By then I was barely eating. Though they bought a Jamie Oliver Lemon Pie to tempt me. After they had been there an hour I laid down on the bed to try to hide the waves of intense pain from them. Soon after I started vomiting disgusting brown stuff. Chris was running around trying to find something I could throw up shitty vomit into. No luck! I had only moved into my little cabin a few weeks before and did not have many things there yet. In the end he used one of my new Corelle cereal bowls. We have not used it since!

They eventually talked me into staying with them in case I needed to get to John Hunter Hospital. On the way I asked them to take me to Emergency. They quickly found me a wheelchair and the Triage nurse took one look at me and somehow managed to find me a bed

I will not go into the details in case something similar happens to you. What I will say is I panicked. And I do not give up easily but I just wanted to find a ditch somewhere and crawl away and die. I had already sent Gen and Chris home as I did not want them to witness anymore of the horrendous suffering. Massive waves of pain like my Stoma area was being ripped apart. Alternated with vomiting noxious bowel contents. Almost asphyxiating on them as they had not inserted the right size NG tube. And they had not turned on the suction. So basically I was vomiting myself to death as my large and small intestine were kinked inside the very small area of opening behind my Stoma

I had one on one nursing care for over eight hours. Dreadfully, dreadfully ill. Four or five days later one of their top private surgeons operated on me as an emergency and he did an unusual procedure whereby I had a scimitar shaped wound under the devices I wear for the Colostomy. And under the wound and in the abdominal wall he inserted MESH

Two years later I have a Drop Foot, weakness in my legs and trapped Femorogenital and also Ilinguinal Nerves. As well as a trapped Pereneal Nerve. This causes horrendous abdominal pain. Hours on end every few days. Much like when I nearly died in 2015. I have been Cat scanned. No obstructions. No hernia. It is the MESH. It bonds with anything near it. It traps nerves and severs them. It causes horrendous injury to so many people and yet it is still being used today

I was fortunate to see a Professor of Neurology who admitted a lot of my issues were likely the mesh. That is highly unusual as there is usually a conspiracy of silence and of intimidation of patients. A few weeks later I saw a Pain Specialist and he confirmed nerves are trapped. He gave me a drug cocktail which remarkably is helping the nerve pain in legs and abdomen. However I will need breakthrough pain meds and Surgical Ablation of these large nerves yearly

In 2015 I asked if the mesh was safe to use. Even when I was readmitted to Hospital with sepsis a week after I had returned home, the surgeons were not saying anything about the mesh. Then on a Saturday a youngish British born surgeon came in for the second time. He sat on the bed and said he had a very bad feeling about this. He said these things go horribly wrong. He was very very strident about getting it reversed.

After he left I burst into tears. I had been through a really traumatic event. A very painful surgery and was facing a removal of mesh and a bigger op to repair hernia? I returned to my son’s to recover the next day. With three months of antibiotics.  A week later I saw the stoma nurse and the surgeon who operated on me. He asked why he had not been informed that I had been readmitted with an infection

He then examined my wound which had quite a bit of infection draining still through areas that had opened to release it. He reassured me the infection was below the mesh as the wound was so deep. So no issues. Yet he arranged to come in for my next checkup on a Public Holiday. I saw him on the ward which was also highly unusual  he also said I could stop the antibiotics

It took six months to recover properly from the surgery and infection and then I started having similar waves of pain to the left of my Stoma. Where the mesh is. Long story short the mesh has caused horrendous pain and suffering. It has cost me my ability to be as independent as I like to be. I am fiercely independent by nature. Hate with a passion being seen as ill or different in any way. For over a year I had to use a walker to get around. Was even contemplating giving in and getting a wheelchair

The Nerve cocktail of Cymbalta and Lyrica in low doses is working miraculously. I can walk again. Still cannot stand for long periods. But the improvement is nothing short of life changing. My memory is much better. I am sharper now after reducing the huge doses of Lyrica I was on. What is surprising to me is that I had no idea how much pain I was in. My son knew. He caught me in an unguarded moment. And was horrified of what he saw on my face. The Neurology Professor was right when he was brainstorming why I was having trouble walking. Imagine being in so much pain you just cannot walk. It’s astounding even to me

I have recently joined some proactive groups on Facebook and their blogs. Things are changing. New Zealand has banned all mesh. Senator Derryn Hinch is supporting banning of Transvaginal mesh. The next big wave of Lawsuits against the Mesh manufacturers is going to be Hernia mesh like mine. I will be joining the class action lawsuits as the ONLY way to stop this is to hit them where it hurts

Unfortunately what we have discovered is that a lot of younger surgeons do not know the older methods of operating without mesh. It’s a nightmare for so many already affected people and we need more visibility to protect others from having mesh. It is possible to have surgeries using “own tissue”. If one can find an older surgeon skilled in this

My mesh is unable to be removed now. No idea what the future will hold. Any bowel obstructions I do have to go to Emergency as this is really dangerous. However the freedom after over two years of agony and weakness has fostered in me an embrace life attitude. Because we do not know how long we have here. We should not waste a second of it. Be brave. Embrace life head on. Instead of saying “why me” I say who else can I help with this problem? Who can I save from this disaster in the making? It works for me. I am quite content with my life now. Acceptance of my condition while fighting to protect and support others is key for me. Everyone is different however.

 

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