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.

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.

All content covered by Creative Commons Attribution-NonCommercial-NoDerivs 2.5 Australia (CC BY-NC-ND 2.5 AU)

 

Where I am Today

I had heard, through various mesh support groups, about a surgeon who was kind and gentle and was anti mesh. When I rang to make an appointment I was told I would have to have a Transvaginal Ultrasound. As it had been seventeen years since my surgery and since the last time I was on the receiving end of any kind of intercourse I thought it a good idea.

The two times sex was forced upon me months after the surgery it was agony. I obviously was not ready and still had stitches etc. I also knew I had a huge ridge of tissue pressing on my rectum which had not healed yet or indeed diminished in size. After the two gifts from my then husband I never had intercourse, or any sort of affection from him for that matter, again. Brilliant.

So as I am now into almost my fifth year since I left him I thought maybe it would be a good idea to see what state my insides are in. Just in case I should meet someone who does not repulse me totally. And I also needed to know so that I do not lead anyone on or find they have expectations of a sex life that I cannot fulfil.

So the surgeon was very thorough. He took a detailed history of all my operations. He was training and working in the UK when I had my Hysterectomy and Burch Culposuspension in a private hospital in Bromley, Kent. We both racked our brains trying to remember the name of the surgeon. In the end I remembered who it wasn’t! Mr Tatford who had arranged my Tubal Ligation the previous year. It was the other Mr as they call surgeons in the UK. There were two to cover a vast area of Kent and South London.

I then toddled innocently into the examination and testing room. So uninformed about what was going to happen that I took my knickers off before he had left the room. Oh dear. Well he could not see anything as I had a dress on but still. I started off on the wrong note and it ended up like that too. The testing went on a very long time. Mostly because he found some incredible things wrong with me. So wrong that he went over and over them again and again. He took so long he lubed up the penis shaped probe at least one more time. Maybe more. In front of me once. It felt a bit weird watching him do that but I thought hey at least I know how much lube to use on a partner! Am all about the observations…it’s how my brain works. And I have never used lube before and my ex went in totally dry. Except for the blood of course. And the stitches. Ah the memories.

So he went back in again and talked me through what he saw again and again. Got me to cough so he could see if there was any stress incontinence etc. I actually got used to having the thing in my vagina for that long. Forgot it was there. The screens are highly addictive. Seeing what is inside you for the first time, what you really are like inside where nobody can actually see unless they cut you open. And I am beyond embarrassment, truly. I felt like a freak inside for so many years that I sort of came to terms with it. Or I thought I had.

He showed me the probe and said he had managed to get it in a certain distance but the scarring was horrendous. But he said that is not too bad is it, showing me this penis shaped probe that is a hell of a lot thinner than any penis I have had the pleasure of encountering. But it was about the length of a usual aroused penis. He managed to get about half in after about an hour of stretching and lubing up my remaining vaginal vault. I grimaced and said it might have been a long time but I did not remember any penis I had encountered being half the size of that probe.

He then started lubing up a paddle probe and as it looked like the one that goes on pregnant women’s tummies I pulled my dress up exposing my tummy. He said no we are doing it down below. First I had heard of it. He then ran this paddle over my labia up to near my anus and then a few times he rubbed it firmly over my clitoris. Which made me blink. Cause one of the main reasons that I went to see him was because of the scarring causing Spontaneous Orgasms. I was mortified that I was not prepared for that. Or told anything about it. And that he did not say one word when he was doing this.

Which brings me to the other thing. In the UK it is law that women must have chaperones when having invasive procedures such as this. It is not law yet in Australia and I was not offered one. I was not given any info beforehand about the procedure and certainly not about the Translabial test. I have since found out the office manager who is an RN is usually offered as chaperone. So maybe I am so old and repulsive that it was not deemed necessary? Cause who would want to molest me? Apart from several males in the past that is. Well, I truly do not know why I was not offered one. He knew I was a sexual assault survivor. That can make vaginal exams difficult. As can the horrid surgery I had.

I left to catch the first of three buses home but on the first bus I started crying. Unusual for me. Rarely cry for myself. Just quietly weeping. I texted my son who was meeting me at the large shopping centre and arranged to go to Jamaica Blue to wait for him. He said I was in shock. He could see it from a distance. He then said I was talking but it was like I was someone else. I was shaking and had started retching. We ordered coffee and banana bread and he put sugar in my coffee for shock. We talked. Or he listened. I had my phone out and I put up a post on Facebook. “Well that sucks”. And all my friends were worried.

I was retching so much we decided to get a taxi home. I was in the front seat and it was a bit like when I put my mum in care. I could not talk. Could not think. But had stopped crying by then. I managed to get some Omdansetron once we got home and my son put me to bed. With a cup of Irish Breakfast tea. The universal healer.

I had blurted out nearly everything to him in the coffee shop. So there was no need to talk. I was getting lots of messages from my friends. And I put a bit more info up on Facebook for my them, most of whom do not live nearby. They were terribly upset. After a rest I started to try to see the bright side, as I find I so often do. Joking about finding a guy with a really short penis. And other stuff in that vein. It was not til the day after that I told my son about the clitoris thing. He was quite upset as was his fiancé. I really did not know what to think. It could have been part of the test. I do not know because he did not explain the procedures to me.

Eventually I put up a post questioning if anyone had this done to them in the Sling The Mesh group on Facebook. Only one out of sixty or so who responded had. The next day I contacted the HCCC in Sydney. The officer took it straight to the Director. Apparently they view victims of previous assaults in a very special light. I was encouraged to make a complaint and the Director saw it as so serious that he said an email would be sufficient. I waited until my GP was back from holidays to ask her what to do about going back for the follow up appointment. I thought I had most of the results anyway from the feedback the surgeon provided as the scan went on. I was mistaken.

So to summarise my injuries
• Huge “deformity” on the Pudendal Canal also known as Alcock’s canal.
• Massive scarring on all organs
• Shortened vagina above that fused scarring. Not removable or fixable
• “Defect” on neck of bladder
• Anal Sphincter defect
• Rectum problematic
Urethrocele

There was a lot more detail on the report to my GP. It was seven pages long. She was shocked and nearly crying. I comforted her. Told her I had confidence in her. The wonderfully strong female medical student came over and studied the scans. Horrific injuries we did not know I had at the time of my son’s birth, did not know until now.

It appears I ripped deep inside where the nurses etc could not see. It was a massive rip which was right on the Pudendal Nerve Canal. It showed up like a Hiroshima cloud on the scan. Massive deformity. Totally out of place on that X-ray. I had so much pain and leg weakness after the birth and I remember saying I think I broke my Coxyx. Something cracked, I remember that. It took months to be able to stand from a sitting position. I had to hoist myself up. Not easy with a newborn. I think that I either stood or lay down a lot.

The bladder was also damaged during the birth. We knew that but did know how much scarring there was. The surgery to repair that damage created the two Rectoceles which required the massive vaginal surgery in 2000. And no wonder that I nearly went mad with that. It would have been pressing right on the deformity on the Pudendal Canal. And it still hurts today.

After I saw the GP I went to have a coffee in our local shopping centre and felt really shell shocked again. I actually sat with my head in my hands. In public. Then I went to the loo, allowed myself two minutes of angry tears and then went back out to face the world. When I got home I filled my son in and wrote out a complaint by email to HCCC. The GP had said she would NEVER send any patient to the surgeon after the way he conducted the test. And she did not want me going back to him.

Although I am prepared to give him the benefit of the doubt I do feel that he needs educating on chaperones, instruction and explanation to patients before he performs intimate testing. He also wrote that “it was an awful lot for Kathleen to take in” so if he knew how shocked I was, how about getting someone to ring my son, or a taxi? A little humanity goes a long way to healing or ameliorating trauma. I certainly received it, from my son and beloved friends.

 

 

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!