So I learned how to spell, pronounce and the meaning of a new word today.
Recto enterocele is a bit of a mouthful and it’s meaning is full of implication.
It was discovered by my Gynaecologist – at another hospital, during a Laparoscopy, looking into the vaginal mesh implant I have and examining my ovaries and bladder. My ovaries were okay, a few adhesions but some draining and slicing left them looking healthy apparently and my vagina, , tubes and pelvic area looked healthy according to notes and following letter but as I mentioned, I do have recto enterocele. Not sure how I can look healthy and have this thing but that’s what the letter says.
It seems I’m unlucky in medical terms. I don’t have easy things to fix. Mainly because they tend to cross over between medical disciplines. A recto enterocele involves the bowel and the vagina. It isn’t an uncommon thing. I have had all the symptoms for over three years now. It is not rare for women to have these things so I’ve no idea why I’ve been left in pain so long with it.
And here’s the rub. I’ve actually been under Gastroenterology and been continually waved on by my consultant. Only having to manage to stay being seen by her with arguing with her staff to be seen and complaining to the hospital about her lack of attention. I’m due to see her tomorrow. I’m anxious.
Let me tell you about her clinic. I was desperate to get to it for starters. I’d been in another hospital for ten days being sick and losing weight quickly. They hadn’t worked out what was wrong with me but as I had an appointment with this clinic which was supposed to be specialist in my Ehlers Danlos connective tissue disorder it was felt I should be discharged into their care.
It was felt I needed a colonoscopy at least and other investigations to get to the cause of the vomiting . Was it linked to my constipation? My stomach itself was fine other than peptic ulcers and gastritis. Which, although unpleasant, not usually known for causing constant vomiting. Major nausea and rib pain. Also having blood and mucus in my poo and even pushing out a fart being excruciatingly painful.
I went to see the clinic at UCLH and Dr so and so. Initially things went okay and the Consultant seem to understand what was going on with me and arranged some tests for a return visit. On the return visit I had to undergo a strange lecture on how the anus works and the important of correct food etc. I explained that I had qualifications in nutrition and biology and although appreciated I didn’t understand how showing me a diagram of the bowel working correctly was particularly helpful in my case.
I did voice my concerns and explained that I had seen a nutritionist at the hospital and that my diet and lifestyle were not responsible for my sickness or extremely painful bowel movements. The male foreign nurse did not understand English very well and I felt is was just something I had to get through. I was happy that my daughter was present as I felt he really didn’t understand or choose to ignore what I was saying to him.
To be fair I was feeling grateful, I was told that some tests were being arranged for me and I would here in good time and return for the tests. Some weeks later I returned for the first of three tests arranged for me. This was a balloon test with an electric probe test. I made the mistake of attending on my own.
There was a woman present during the test. I’m not sure what her role was supposed to be but I felt she was not a compassionate woman as I pleaded with her to stop him from continuing the test as it was so painful. It was the male nurse who I had seen previously. I didn’t feel confident that he was doing the test. He seemed unable to communicate to me what was going on. I did ask him to stop the test. I felt that he did not listen to me at all. I was left crying, upset, and bleeding from my rectum. I was told it was my own fault for the bleeding as I had a sensitive anus.
I was distraught after this test. I found it very difficult to attend the next ones. They were badly scheduled too with only a week or two between them. One of them I had to try and poo in an MRI machine. yep. No, I couldn’t do it. I started throwing up in the MRI machine and got taken out of there in a wheelchair I became so ill. I hadn’t had enough time to prepare and empty my bowel properly before they put up the jelly I was supposed to poo out. Also just pushing my anus in an outward movement really hurts so much that vomiting seems the only way my body knows how to handle that sort of pressure.
The other test involved eating loads of metal objects to see where they were in a weeks’ time. Guess what they were still all in me! Slow transit for sure! So one test come back with results which meant something to me as the other tests were not able to be completed properly as too painful. But no. I did this test just a week before the poo in the machine test….where was the sense in that ? If after ten days the metal bearings are still inside me how was I supposed to empty my bowel in the week before the next test? Then knowing I have problem emptying my bowel they pulled me in twenty minutes before the scan due time to ’empty my bowel’….the pressure was immense.
Anyhow, I needn’t have worried. It seems that I had nothing wrong with me. The tests showed I had no problem pooing in the machine (remember I didn’t actually do this as I got removed from the machine as I was vomiting) and that somehow all was fine with the balloon test and electro probe tests results too. There was no mention of any set of tests or scans being a problem for me. None.
So, this means that, whilst I was telling the uncompassionate male nurse that I could not feel the ‘electric pulse’ only pain that this is a normal occurrence perhaps. Even when he moved it around in my arse and I could still only feel pain and repeated would he now stop. Even when he moved it a little deeper in I could only feel pain to the point where I snapped at the female nurse in the room whether she could hear me as he seemed to not be able to…he then stopped. All that was normal stuff it seems…..
When the consultant met with me to discuss the results and recommend bowel retraining program I was so shocked I didn’t know how to respond. I did the bowel retraining program. I saw her afterwards and again voiced my concerns about the level of pain and that the scan results seemed suspect and that I didn’t understand the balloon and electro probe results. She dismissed me on this again but agreed to send me to see a neurologist to find cause of vomiting and also check on some heart test results which had shown I had a very low blood pressure level, which could be why I pass out. She asked me in an annoyed fashion if I would like her to actually check that there was no damage to my rectum after I voiced concerns that she may be missing something. A rather uncomfortable rectal examination followed where she told me that there was nothing wrong. I felt a little silly.
I’ve been back to the mental health services. I thought maybe I was making it up or somehow I was making myself ill. And of course I’ve learnt how unlucky I have been over the last few months. It seems the TVT they kindly put in as an extra when I had a hysterectomy is made from silicon.
I didn’t need it, my bladder was fine I had endometriosis and a connective tissue disorder. The TVT caused problems immediately. I lost feeling in my clitoris, had problems emptying my bladder on the ward after the operation and then slowly over the next fifteen years my sex life completely. I did immediately asked for help but was told it was other medications I was on and I was eventually diagnosed with interstitial cystitis in 2009.
Then last year I started reading about the TVT and it’s complications. Until then, from 2006 to 2017 I firmly believed it was what I was eating, drinking etc and my lifestyle which was causing my bladder issues – again seeking help from mental health services because I’m being pushed from one hospital to another attempting to find some relief.
I carry on being sick a couple of times a month these days and try to stand up for more than a few minutes at a time but the pain in my arse, back, abdomen and vagina conspire against me and my legs buckle. I sit and I move slowing to avoid passing out. I sometimes use a wheelchair, I often use a walking stick. I rarely leave the house other than to visit the hospital.
So tomorrow I go and see my Gastro Consultant. I will be armed with a letter from my Gynae saying I have rectoentrocele. I’ve looked up the symptoms and they are painful pooing, wind expulsion, blood and mucus. So I’m going to try not to be too anxious about seeing this so called specialist and then try and be a very patient patient.
She will probably say it’s a Gynae thing. I’ve yet to see my Gynae since the last surgery. So I’m unsure as to whether they will help as it may be a complication of the TVT although the tape itself in intact still thankfully.
I can’t help feeling what a waste of NHS money and my time and all the staff involved in the tests I had done which weren’t carried out properly. They could have been carried out in a way which would have worked I’m sure but the scheduling and the staff and her own attitude was rubbish. Three years and counting. Been off sick on benefits for the last two so I can’t help thinking that under the guise of ‘helping’ the NHS is doing more to make us sick.
*update 18th Feb 2022 still not being treated yet…