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.
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.