Tag: prolapse - Conscious Crafties

Posted on 4th January 20174th January 2017 by Jennie Louise Smales — Leave a comment

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 Secretary. 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,

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.

UPDATE: Jennie’s doctor has responded and is asking his Secretary to book her in his clinic 🙂 Watch this space….

Beautifully Written by Jennie Louise Smales from This Little Life of Mine.

Posted on 13th April 201613th April 2016 by Jennie Louise Smales — Leave a comment

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.

Posted on 25th February 201626th February 2016 by Jennie Louise Smales — Leave a comment

Testing Times

So, I have a problem which I haven’t really spoken about. Partly because I’ve been digesting this new issue for myself. Partly because I’ve been embarrassed. But I shouldn’t be. This is a medical issue. A complication of one of my conditions, and it’s not my fault.
Last night I went for a test on this problem area. A test I was terrified of having. It was then that it struck me. I’m not the only one going through this. I’m not the only one scared about these tests. The fear of the unknown can be a terrible thing. So I’ve decided to share my most intimate of troubles and my experience last night in the hope that it eases other people’s fears.
Here goes… My name is Jennie and I have prolapses. Yup. That’s plural. I’m not going to sugar coat it. My bowel and back passage are pushing up into my vagina. My bladder is pushing down. My uterus seems to have dropped towards the front of my vagina and my back passage also prolapses out of my anus when I pass a motion. Basically my nether regions are one big old mess! Living like this isn’t fun. But explaining why is something I’ll brave another time.
Luckily I’ve been referred to an excellent doctor who is determined to fix me. Even though, due to my underlying health conditions, I’m a very complex case. The first step on the road to surgery was a test called a defacating proctogram. This can be done either with X-ray or MRI. I was to have the MRI, and let me tell you I was terrified.
My basic understanding of the test before I went was I would have something (I thought maybe barium) pumped into my back passage and then I’d have to poop it out in front of someone. My experiences of anything going up that area has always been incredibly painful. So I was nervous to say the least.
The test was in the evening at Weston Park Hospital in Sheffield. Due to the time and location I travelled alone. The hospital was easy enough to find, and parking was abundant and free. Always a good start. I arrived a little early and buzzed the bell to let them know I was there. The nurse had a quick chat with me, as they were concerned about some bleeding I’d had previously, then I had a short wait until my turn. I apologised profusely about it being my ‘time of the month’ but they assured me if it wasn’t an issue to me it wasn’t to them.
At the time of the test another lady came to collect me. By this point I must have looked like a dear in the headlights. Again she questioned me about my bleeding. She was also very reassuring about the upcoming test. In total there were three very kind and comforting women looking after me.
For the test itself you change into a gown and then empty your bladder. Any metal must be removed for the scan and it’s advisable to leave your valuables at home. Then you enter the scan room and lay on your side on the scanner.
Looking #hospitalglam in my gown.
I had two women in front of me and one behind, at the business end so to speak. The two ladies in front kept me chatting and relaxed whilst the one behind filled me up. In total she put 600ml, of what turned out to be the gel used for ultrasounds, inside my back passage. The aim is to fill you up to just around your sigmoid. Honestly, the srynges looked quite scary, but it didn’t feel too bad. The nozzles were small and they had been put in warm water to heat up the gel so it was body temperature. The sensation was definitely strange, and mildly uncomfortable. But not painful. Every now and again it would make a popping noise when air trapped in the srynges would pass into my bowel. That felt odd, but again not painful.
You then carefully roll onto your back and a cushioned plastic ring is placed under you to collect what you expel. You’re also given a headset to protect your ears. A tray thing called a coil is placed over your abdomen. This helps get better pictures.
At this point the ladies all left the room and I was popped into the scanner. My head was pretty much completely out, so I didn’t find it claustrophobic. First off they took lots of scans just with the gel inside me. Then I had to push as if I was trying to release it whilst keeping my bum clenched. This sounds a lot more tricky than it actually is. It takes a bit of thinking about, but it’s nowhere near as hard as patting your head and rubbing your tummy at the same time!
At this point the lady who filled me up returned. She told me the time had come and ran through what I needed to do again. I’d be told to release and then I just had to push the gel out. Easy right? Wrong. For me this was the most difficult part of the test. I pushed and I pushed and I pushed. I swear I pushed harder than I did in labour. My veins bulged. My muscles strained. I even saw stars! But that gel was not moving. Eventually I shifted a bit of it. But only a bit. This part of the test apparently lasts two minutes or so. But it felt like much longer.
Afterwards my lady returned to tell me what I already knew. I had failed in my task and was still full to the brim with enough jelly to cater a children’s birthday party. So after a quick clean up with the wipes provided I toddled off to the loo to evacuate the rest as best I could. Then it was back on the scanner for a final few images and that was that. Scary test over.
Honestly the fear of the test was much worse than the test itself. I have been left with some discomfort the day after. But I think that’s mainly because I really went to town trying to ‘release’. I’ve strained just about my everything. If I have any advice it would be not to push so hard that you feel like your eyes are going to burst from their sockets. Otherwise it’s really not too bad. Of all the tests I’ve had this is one of the few I wouldn’t be too upset if I had to repeat it.
I hope that if you’ve got this test coming up I’ve helped ease your fears a little, and I wish you luck with your treatment on the whole.