I have been abscent for a few days because I have been very busy and had a lot to deal with.
On Wednesday 22nd, I went to see another surgeon, and I went left in tears. I sobbed all the way home in the car with my mum, and then when I got home my mum hugged me as I cried some more.
The trip was a complete and utter waste of time. We went to see the Dr at a private hospital. I was determined to get answers this time so I wrote out all of my symptoms, printed off pictures of what happens to my body due to these symptoms.
But it turned out to be utterly pointless.
He wasn’t interested in anything I or my mother had to say in the appointment. I gave him the pictures and the symptoms, and he said “I have no idea what most of the symptoms could mean or what’s going out. A few of them would suggest that you have IBS, but the rest don’t align.”
Then when I and my mother tried again to say that we don’t think it’s IBS and we aren’t happy with his diagnosis and that we felt that IBS is a very big umbrella that doctors use for patients when they can’t or won’t find an explaination for symptoms.
He was paying so little attention to me or my notes that it took me 3 attempts to get him to understand (barely) what had happened last year. He couldn’t get his head around the fact that I had 3 ops in 3 weeks, days apart from each other. He kept saying “well, they would have seen scar tissue when they went in the following operation, after April in June.” & I’m saying “I didn’t have an operation in April, I had 3 in June… I never healed, they just kept opening me up…” and he was saying “So…. you had 3 operations in 1 month?” And we are saying “yes” and he is just shaking his head saying “I don’t see what you mean.” It was infuriating. I was getting so mad that I started to cry in the appointment, and then when we finally got him to understand about the operations I started to talk about my options and he said “Well, I won’t be doing anything not at this hospital, try a hospital closer to you.”
My mum is getting cross and she goes “The whole reason we have come to see you, is because I will not allow East Surrey to touch her again and Worthing hospital has a 7 month wait for her to have an appointment. This is why we have been refered to you, and if it’s a question of money, it isn’t a problem we will pay.”
I then explained to him that the surgeon at East Surrey had said he would operate on me, until East Surrey Hospital decided that they wouldn’t deal with me anymore as it would mean they had to admit they messed up.
So I was there, looking for answers and he just kept talking about his friends at East Surrey Hospital. I said “what about the previous option I had where they could go in and look at the adhesions and the scar tissue and remove it if they could.”
At this point I was getting so angry, he’s saying “I understand it must be hard for you” and I’m angry crying and I say “No you don’t. It is very easy for you to sit there and tell me you understand, but you don’t. I’m 27 and I cannot work, I’m meant to get married next year and I don’t even think I’ll make it through the day. There is no way I could have children like this, I barely make it through a day, and none of it is my fault. This is all caused because you surgeons have a god complex and you think you know better. They messed up, and here I am a year later paying the price for it. So you can sit there and tell me you understand but you don’t.”
The nurse who is also in the room with us is sat behind the doctor and I can see that she is also crying and she is shaking her head.
The doctor than looks at me and says “Well, the operation would be a very good idea and it is certainly a conversation that you need to have a surgeon as I think it’s a serious option for the next step for you….” so my mum asks him if he will do it and he says “Oh no, I won’t do it, you’ll have to find someone else.”
I then asked him if he was going to look at any other options of what could be wrong with me, because of all my symptoms. I mention to him about my adrenal glands. He just stares blankly at me and goes “I have no idea what those symptoms mean. They are worrying, but I won’t be doing any tests for you…”
I have never felt more angry or helpless at the same time in a long while. I was speechless and livid. I just wanted to shout at him.
He finally examined my belly. “It’s obvious to see you are in a lot of pain, but I don’t know why.”
He got back on to IBS… “Go and see an IBS surgeon” I said “It isn’t IBS, I am willing to put everything I own on it not being IBS. I have tried every medication for it from the drs and it didn’t work or make a difference. I have tried every diet there is, I have tried gluten free, diary free, I’ve tried every single IBS diet I can find, I have tried cutting out all of the foods recommended by the drs and other suffers, and there has been no change. The issues with my bowel didn’t start until all of this stuff with the operations and my appendix removal happened. Before this happened by bowel worked like clockwork if we are being honest. So you are telling me that I have an operation and then the next day my body decides I have IBS? The bloating I get isn’t linked to food… it’s linked to me overexcertting myself. If I walk to far, or I pick something up that’s too heavy.”
He looked at me and said “Really? Because no…” My mum said “Yes. We have done everything, she’s been on all of the medications. And it isn’t related at all, which why we want help. This is why we think you all rely on IBS as a get out of jail card. My friend was being treated for IBS for 2 years, and she didn’t believe it like Emma and I, none of the diets or drugs worked for her, so she paid to go private and they found a 5cm cyst on her ovary. So really it shows you… Emma can’t even walk around town with me anymore. She will be having an ok day, and then suddenly I’ll look at her and know she’s about to tell me she doesn’t feel well, she will go grey. She looks like death and then her stomach bloats out so that she looks 8 months pregnant. So you explain that?”
He just sat there again… “I don’t know, I’m sorry this is happening, but you won’t be seeing me again. There’s nothing I will do. I suggest going to see another doctor, or paying to go private.” (It must be noted that this guy was a private doctor, but I was being sent NHS. I believe this does have something to do with the way I was being treated.)
After that, the nurse behind him was still shaking her head and still crying at having to see me cry, I’d had enough. I said “Right, I’ll go and see someone else, thaks for your time.”
As we left he said “Do see a doctor, because thinking about it your other symptoms are quite worrying.”
So once I was home and I told Harry what happened and he hugged me… mum and I decided to have a sit down and we picked our plan of action.
And the funniest thing… ever since my appointment with him, I haven’t had nearly as much trouble with my bowel. It’s been working again. Without taking the medications I have to take to try and get it working. So we are now even more convinced that it’s not IBS. So here we are, back at the start, still fighting the battle. But I will get there. I won’t let these doctors win.