The Appointment Arrived… 

If you’re a regular reader of my blog you may have read my Desperate Plea; an email I wrote impeaching a surgeon I’d seen months previously to help me. Basically I have prolapses galore since the birth of my son. That combined with years of bowel problems and slow transit has left me with severe difficulty when defacating, or even passing wind. To the point my bowel becomes incredibly sore and bloated, resembling that of a pregnant woman. This issue is really taking over my life, to the point I literally begged for the doctors help. 

Normal stomach and bloated stomach. This happens daily and you can see my tummy swelling.

Miraculously the surgeon actually read my letter and even responded within a few hours, promising to get me in his clinic. A promise he indeed kept. 

Yesterday was that appointment. The one I’d been simultaneously hoping for and dreading all at once. The one which is been mentally and emotionally preparing for. I’d steeled myself for the very real fact that he may tell me I couldn’t be helped surgically. I also looked into options I thought may be of help. Options which my friends and family believed would never happen. Never even be on the list. They were wrong. 

Yesterday, as I laid everything on the line to the surgeon he looked me dead in the eye and told me I had three options. 

1 – have a tube as small as a biro formed from my skin into my bowel which I would then flush through with saline every day forever. 

2 – have the prolapse repaired and then have the tube inserted if I’m still having problems. (Which I enevitably will have as my issues began as a small child)

3 – a colostomy bag. The option everyone but me thought would never happen.

I asked his advice. What do I do? He couldn’t tell me. Ultimately, this is my decision. It’s my body, my life, my choice to make. 

Whilst I understand that; a huge part of me wishes he had been able to promote one option above the rest. To take the responsibility from my shoulders and ive me someone to blame should it all go wrong. Or even if it goes right and I just have a tough day. 

Right now I’m in shock. I don’t know what to think and my emotions are all over the place. I’ve burst out crying and made many many inappropriate jokes since stepping out of that appointment. I’ve researched, and worried, and researched some more. There’s not been a walking minute where this huge decision hasn’t been nibbiling away at the corner of my psyche. 

People have said to forget about it. To put it to the back of my mind for now. My surgeon is going to discuss my case at the Multi Disciplinary Team Meeting. I will be having a Marker Study on my bowel to see which bits are pulling their weight. Then, in six to eight weeeks I will be back in to see him. Possibly signing up for surgery. It’s not that long to wait, but right now it feels like forever. 

I’ve asked around for people’s opinions. Many think have the prolapse repaired and just see how I go. Or just have the small tube. But, having lived with my problems, I know that neither of those will work without having both done. They cannot be done at the same time. So I’d need at least two operations. My surgeon couldn’t tell me if the flush outs would be painful. Only that they take at least one, maybe two hours and must be performed daily. Or every other day if you’re lucky. So even on days I cannot see straight, I’d have to get my ass on the loo, and stay put. If it’s anything like when movicol explodes through me.. it will be painful. I don’t know if that’s a sustainable option for me. 

So I come to the bag. A huge operation to form a (possibly irreversible) massive change to my body. Scary to say the least. The thought of never having to go through the ordeal of passing a motion through the traditional exit ever again though? That leaves me wanting to cry tears of joy. It’s not that simple though. I know I get a lot of mucous build up. So, if they don’t take my colon I’d still be having to go and evacuate that. If they remove my colon then the op becomes irreversible for life. Which would be the best option? Would I still be able to eat steak?  My body is super sensitive, could I cope with the adhesive of bags on me permanently? Would I still be able to eat steak? Would it be possible to stay hydrated so as to keep my POTS in check? Serously, steak? How would my EDS impact healing? Would it put my husband off me? (Regardless of the fact he claims it won’t.) Could I still sleep on my tummy? For the love of god, could someone just tell me if I could still eat steak???!! 

I have a lot of questions. New ones are popping into my mind by the second. But I’m trying not to focus on this too much. I’ve been called brave. But I’m not. I’m scared. I’m terrified. I’m frightened of having another operation. I’m scared of adjusting to a tube or a bag. Mostly though, I’m scared of having to continue as I have been for the rest of my life. I’m scared of missing out on my kids growing up. It’s that fear that pushes me forward. That stops me hiding in a corner and refusing surgery. I have a family to fight for. A family that needs me present, not locked away in pain. For them, I will do anything. 

** NB. The surgeon said my frank openness has been a great help in treating me. He wishes more patients would leave their modesty at the door and just tell him like it is. That’s perhaps something to consider at future appointments. 

A desperate plea… 

Below is an email I sent this morning to a specialist I saw last year. It’s not professional. It’s not the right way to go about things. But it’s real. It’s my life. It’s the level of desperate I’m now at. I’m not sharing this for sympathy. I’m sharing it to highlight the thousands of people out there who are just like me, living  with these problems. Sharing this isn’t easy. It’s hard not to be embarrassed and disgusted with myself. These are issues often kept behind closed doors. But I’m opening them. I refused to be ashamed. It’s not my fault I have to live like this. 

If someone told you they had a prolapse, would you think it a big deal? Would you expect it to seep into every aspect of their lives? Would you realise that it could be on their mind of every second of every minute of every day? Probably not. Well… maybe this may open your eyes to what it’s really like…

Hello Dr ##1##, 


I’m sorry to contact you directly, but I’m unsure what to do. I feel I have to take things into my own hands. 


I have had my surgery in October with Dr ##2##. She addressed the cystocele and prolapsed uterus by performing a vaginal hysterectomy and anterior prolapse repair. No mesh. 


However she refused to touch my rectocele, which continues to get worse and worse. I now cannot pass wind without pressing on my perineum, or bulge within my vagina. The only time I pass any stool is when my laxatives cause me to have violent and painful loose stool. However some of this always collects in the pockets of bowel and quickly hardens and blocks it. Mostly I have to manually remove my stool. This involves putting a thumb inside my vagina and two fingers in a v around my anus (which when I need a motion bulges out to varying degrees). 


I manipulate the whole area in order to push the stool out, as my lower section of bowel doesn’t push at all. Often times I then have to insert a digit into my back passage to try and help the process along. Inside is a large cavern. It feels almost flying saucer shaped. (Sorry that’s all I could think of to describe it) I have to sweep my finger around to collect stool and mucus. Above this area it seems to become tighter again, but still won’t push, though the muscles around do clench. Since my surgery however there also seems to be a large grissly bulge protruding into that upper area. 


Unless the laxatives cause me to have severe cramping I very rarely can tell if I need to pass a motion anymore. The only things that alert me are bloating, a heavy feeling, and being unable to urinate. This also happens with the large amounts of trapped wind I get. You don’t realise how much you must naturally pass throughout the day until you can’t do it anymore and it’s all stuck. Let me tell you, there’s a lot! I could power a wind farm. The only way I can tell which it is is to feel whether my bulge is full of gas or stool. Then get it out. 


Every single time I go to the toilet is an ordeal. I’m left feeling in pain, bruised and without any dignity. Because of my POTS and EDS the positions I get myself in often cause my joints to hurt and sublux. My legs go completely numb and my heart fluctuates. I also get hot sweats and dizziness. All this combined means my husband often has no choice but to supervise me on the toilet and help me back to bed. I can be on there an hour or more at a time, and bed is always where I end up. It takes so much out of me. Plus, I never go just once. Often there’s at least three trips to actually get the entire stool out. 


I have ended up in tears, wishing for an ostomy over this life. How crazy is that? I know it’s crazy. But I just cannot go on like this. 


The only thing that Dr ##3## can think of is regular irrigation. Possibly even weekly, from now until kingdom come, to get my bowel cleared and hope that in between I feel ok. He said he doesn’t believe I have crohns. There’s no sign of it on any recent test. But he told me, if it’s IBS it’s the strangest and most aggressive type he’s ever seen. 


Please will you help me. Dr ##2## was lovely. But you are the best in colorectal surgery. I know I’m a complicated case. I followed your instructions. I saw a different doctor. I did everything you told me to. Now, months down the line, the problem I came in with is just getting worse and worse. You wrote to me saying if I was still having problems to get back in touch. Whilst writing this letter I got a call back from a Secratary. She told me my GP must write in and I have to wait all over again. I feel like I’ve been waiting forever. I feel like the main issue I need help with was pushed aside and I’m just left here to suffer. Now to hear I’m starting from scratch is devastating. 


My in laws have booked to take us to Disney in early 2018. They’ve already put it back two years because of my health. They can’t move it again. How do I tell my kids I can’t go because I can’t go to the toilet like a human being and it’s ruining my life? I struggle to even wear clothes due to the extreme bloating. How do I tell them that after all the waiting and the surgery I am right to the back of the pack again? 


I know I’m just another face in a sea of patients begging for your help. But I took your advice. Please, now will you try to help me? I’m not too proud to beg. 


If you got to the end of this letter I appreciate it. Most doctors would bin it immediately. I really am sorry for contacting you directly. But desperate times and all that. Also, Dr ##2## really was lovely and treat me very well. She just hasn’t fixed the thing that most impacts my life. 


Any advice you have would be greatly appreciated. 

Regards,

J

Please. If you know of anyone with these problems, don’t make fun or make light. Be aware of the fact that these issues can make you feel sub human and worthless. If, like me, you are going through this. Don’t just sit back and wait in line. Dig your heels in and kick up a fuss. Push hard for the treatment you need!! 

If by some miracle any Doctors happen to read this blog. Well, to you I ask this. Please try to understand that prolapse can impact a persons entire life. Many people in support groups Im in are teetering on the edge of a complete breakdown. Treat us with respect and care. But also with a sense of urgency. The longer we live like this, the less human we feel. 

Living the POP Life. 

Living the POP Life. 

I have a prolapse. In fact, I have several. I’m what’s known as a POP patient. I’ve been tested and checked and I know the extent. I know that all my insides are basically clamouring against each other to become outsides. I know which bits are ‘winning’ that battle. I know that I cannot pass a motion, or even wind, without some form of manipulation. I know that I have hemorrhoids and I get a full mucosal prolapse when I even attempt a number two. I know that just trying to irinate is like trying to wring out a wet rag whilst wearing boxing gloves. I know that I bulge and balloon and I stretch and strain. I know my episiotomy scar splits and I bleed. I know that I’m sore and I feel smelly. I know that when I menstruate it’s all caught up in a mess of bulges and gross. I know that I don’t feel like a woman anymore, or a person, and most definitely not a sexual being. 

Of all my ailments this has probably knocked me down the most. It’s dragged at my confidence in the same way it constantly drags down on my abdomen. Each appointment has involved examinations and tests in my most intimate of areas. Many of those with a male doctor who made me feel guilty and selfish and like a bad mother because I am desperate for surgery to help me. All because he was afraid to perform it and wanted to put me off. I’ve been poked and prodded and made to spread my legs. I’ve had gel inserted inside me and been made to push it out with a gallery of technicians watching me. I’ve cried and wiped my tears then cried again. 

Sex has become a taboo word in my relationship. How do you have sex when you are constantly uncomfortable? How do you feel remotely sexy when your own body disgusts you? I recoil and tense up if there’s the merest hint of an advance from my husband. To me that area is no longer sexual. It is not pleasure. That area brings pain and misery to my life. It brings degradation and embarrassment. That area is separate from me and all of me at the same time. I can honestly say I hate that part of my body. 

Last month I saw another surgeon. My final hope. A woman. A woman who had kind eyes and an understanding air about her. Again the same questions were asked and the same examinations done. Again the tears flowed. But this appointment had a different outcome. Instead of a hard no, I was given a yes. A promise of surgery. But not just one. No, my life is never that simple. For me it will be several. Probably a lifetime of repeat fixes thanks to my genetic condition. But she understood my pain and could see that I cannot continue this way. Feeling less than nothing. Hating myself because of something I have no control over. Something I know I shouldn’t hate myself for. Walking out I was relieved, I was happy, I was excited. But over and above all that I was terrified. 

I’ve never had major surgery before, I never really imagined I would have. Especially with the health issues I have. The words of the previous doctor rang in my ears. How recovery would be long and gruelling and I’m taking myself away from my kids. The surgery is looming closer and if I’m honest I’ve almost been talking myself out of it these last few weeks. Fear of going under the knife is almost stronger than the horror of living as this leaky, painful mess. 

Almost. 

But not quite. Because every time I sit down and wince, I look to the surgery. Every time I feel the aching pull in my abdomen, I look to the surgery. Every time I can’t go to the toilet or pass wind, I look to the surgery. Every time I leak, I look to the surgery. And tonight, when I sat on the loo and somehow managed to urinate down the back of my ankle;  instead of falling apart, I looked to the surgery. 

Because I will have it. I will get through it and I will feel like me again. No matter how difficult the recovery. Because I’m a fighter and I can do this. 
Talking about my prolapse can be both difficult and embarrassing. But from what I’ve learned there are many women out there living a life similar to mine. Though I cannot say I’m proud of  having Pelvic Organ Prolapse, I’m determined not to be embarrassed or ashamed. This post was a hard one to write and share, but worth it. I hope to show women they are not alone and to help #breakthetaboo surrounding gynaecological issues. 

The words I dare not speak. 

The words I dare not speak. 

*** I don’t know how this post is going to go. But I would say reader discretion is advised. ***

As many of you know I’m struggling with the symptoms of a prolapse. In fact, when I saw my surgeons for the results of my Proctogram their exact words were that ‘everything is coming down’. I do hope to share my story at various stages, and was intending to share my experience of that appointment. This is not that post. 

But that appointment does play a part. You see it culminated in the surgeon I’d never met before telling me I would be fitted with a pessary. I told him I didn’t want this. I’d been told I’d need surgery. I stuck up for myself. But no. He thought a pessary was the way forward, and that’s what was to be done. 

Ordinarily in this situation I’d feel disgruntled to say the least. Royally pi**ed off would be a more accurate description of my feelings when doctors steamroll me into things. This time I didn’t. This time was different. This time I was devastated. Completely and utterly devastated. I felt something inside me well up. Something I hadn’t felt for many many years. Something which I wasn’t ready for. 

I told myself it was disappointment. I’d been hoping for a surgical fix. But yet again I had landed myself with a condition to be ‘managed’ rather than cured. Something that would need long term treatment rather than an end date, a fix. I lamented this fact to my husband. He was sympathetic, but also confused. This was a none surgical option, surely that was better? He had a point. So I saw my GP. I asked questions. I looked at diagrams. I researched. 

The results were good. The pessary was less invasive. No recovery time. I may be able to cope with it for a long time and only need smaller surgery. The side effects were minimal. If it didn’t suit then surgery was still an option. I even spoke to women with a pessary. The feedback I received was overwhelmingly positive. I feel I need to point out that for many women the pessary would be a wonderful option. 

But not for me. 

For a while there I put it to the back of my mind. Then my letter arrived. My letter with the info on the pessary. My letter stating I would have my appointment for a pessary fitting ‘in due course’. I read that letter and I sobbed. I cried long forgotten tears. Once I started I just couldn’t stop. I think I sobbed all night that night. Quietly in bed. My back to my sleeping husband and wonderful baby. I broke my heart time and time again. 

Eventually, in the dark, I picked up my phone and emailed my ‘nice’ surgeons Secratary. I wrote the words I wasn’t ready to speak. I wrote the words that I didn’t even realise had been the problem. I spoke of a tragedy I thought I’d long since got over. I wrote and I hoped. I hoped for understanding. I hoped for compassion. I hoped for a new option. 

Soon after I saw my GP for an unrelated issue. He innocently enquired if I’d had my prolapse appointment yet. I think he was surprised when I broke down into a puddle of tears in his office. He almost cried himself when the words came tumbling out. 

FOURTEEN. VIRGIN. RAPE. VIOLATED. 

It was at that point I knew 100% I could not have the pessary. I could not, and would not, force myself to go through all those emotions again. After so many years of counselling, healing, regression and then finally progress, I wasn’t going to step back into the dark. My demons have been long locked away. I thought I’d got rid of them altogether. Clearly not. Clearly they still exhist in the darkest depths of me. But that is where I intend them to stay. 

I feel weak. I felt pathetic. I felt downright stupid for allowing something from so long ago to affect my health today. But my GP didn’t. He understood. He understood that childhood trauma becomes engrained in your soul. 

I was a child. Until that day in my GP office I’d never seen it like that. At fourteen I’d felt like a grown up. I was independent. Strong. Fearless. But now, fifteen years later, I finally see I was a child. That was a hard pill to swallow. 

So that’s where I am now. My GP has written to my surgeon stating he feels the pessary is not an option for me. My truth is out there, and now I’ve scared it with you. 

Don’t get me wrong, it’s still hard. I’m still struggling. I’ve dredged up a part of my past I never wanted to face again. But I’m glad I spoke those words. Because had I not I know I’d of ended up being railroaded into something that just wasn’t right. Not for me. And now I have a doctor to vouch for that. 

So ladies, and gents, if you have a past experience that still impacts you today. Something you dare not speak of. Something which affects the way you may view medical examinations or treatment. I implore you, find someone you trust and let them know. Because they can and will help.