On Friday I was lucky to have my sister come to visit me. She had driven all the way from Derbyshire and she must have known that I needed some support.
When she arrived I was trying to tackle a form for the benefits office. I'm sure they make them difficult in the hope that people give up filling them out and so don't bother to apply for benefits. I think trying to do these things when you're ill is particularly difficult and my mind was all over the place thinking about the meeting with Dr7 that evening.
She arrived and sat with me, helping me to fill out the form and listening to me as I ranted at how hard everything was, how unfair things were and how I felt that I just couldn't cope. "You have to cope. There are 3 people at home that need you to cope" she told me.
Kelly hadn't been there long when Kitty arrived. I was pleased that Kitty got to meet her and they seemed to get on. Kitty was going to help me prepare my questions, comments and concerns for the meeting with Dr7 that evening and make sure that I hadn't missed anything and Kelly was going to update the blog posts to stop me from getting sued!
I wanted to be as prepared as possible because I thought it was going to be a difficult meeting. After all Dr7 is one of the leading consultants in the country and travels around the world speaking at conferences so he knows his stuff. I was just little old me, trying to convince him that I wasn't mad and that the pain wasn't all in my head. What chance did I realistically have?
We were just on our way to Costa to take advantage of their free wifi when the Charge Nurse asked if we would mind waiting as there was a surgeon here to see me.
A surgeon? After all this time? I had only been asking for the last 3 weeks for Surgeon A to come and examine me or send one of his team. Nobody had come and this was a source of frustration because I just wanted my rectum and pouch to be examined by a surgeon. Maybe they could feel something that the scans don't show up?
Anyway we sat and waited and a few minutes later a surgeon (who we will call Surgeon B) arrived. I had never met this surgeon before so we had brief introductions where she told me that Surgeon A had asked her to review my case (and my bottom). She asked Kelly and Kitty to leave, but I insisted that my sister stay as I felt so vulnerable, especially after what had happened on Wednesday and I wanted someone with me to support me as I had no idea what she was going to say or do.
She agreed and went on to ask me about my medical history, about my childbirths and to describe the pain I was currently experiencing. I told her, like I've been telling everyone, that its like being in labour, that I feel like I'm having contractions in my bottom, that I feel a pressure sensation in my rectum. She asked if she could do an examination. "Please do, I've been asking for a surgeon to examine me for weeks now" I told her.
Now nobody likes having a rectal examination but they are a regular feature when you have the illnesses and problems that I have. But this time I was almost looking forward to it- no that sounds all wrong. It's just I was so pleased that someone was going to have a feel and check it all out down there because I knew something wasn't right. I just needed someone else to know it too. And a finger up the bum was the only way to achieve that. So I took a deep breath and....
After a poking about for a while Surgeon B said "mmm, now that's interesting". And on removing her finger she instructed me to 'tidy up' and get dressed while she washed her hands so that we could talk. Now was this interesting good or interesting bad? What had she felt? I had no idea what she was going to say and I was shaking as I tried to pull on my knickers and pyjama bottoms.
And this is basically what she said. It may not be exactly correct as she used a lot of medical terminology so I've paraphrased but here goes.
Basically she said she expected my pelvic floor muscles to be short and weak after having 2 natural childbirths and with the amount of surgery I have had. However they are long and strong which indicates that they're in spasm. Because they're spasming they're pulling on the anal sphincters and causing them to spasm and all of this spasming is causing my pain.
I sat there stunned. I knew there was something wrong down there and now Surgeon B had examined me, felt it, diagnosed it and, wait for it, she had a plan to treat it.
So how can it be treated? By injecting Botox into the pelvic floor muscles to stop them from spasming she told me. It is only temporary, she warned me, and it will likely affect your continence. But to be honest I don't care. I would rather be a bit incontinent but not suffer this pain. I'm already a bit incontinent anyway! And I'm sure that with some physio for the anal sphincter muscles I could improve my continence over time.
Surgeon B wanted to have another surgeon (who we shall call Surgeon C) come to visit me as pelvic floor muscles and Botox were Surgeon C's speciality. If Surgeon C was happy then they will do an examination of 'down there' under general anaesthetic together and inject the Botox.
When Surgeon B left Kelly went to fetch Kitty from the dayroom. She obviously gave her a heads up on the way back to my bed as they were both grinning like Cheshire cats.
"It's not in my head. It's not in my head" I said to them and I broke down and cried. Kelly sat on the bed next to me, pulled me close and started to rock me. "It was never in your head" she told me. "We all knew that. It was only Dr7 that thought it was"
I cried and cried. Happy tears because I now knew what was wrong with me. Tears of relief because I wasn't mad. There was something causing the pain and it wasn't anxiety as Dr7 had said. I had angry tears too. Dr7 had been so accusatory towards me, suggesting that I was imagining and exacerbating the pain but there is a real, physical cause for the pain. It is not in my mind.
And as I sat there with my sisters arms around me and Kitty holding my hand I felt a huge sense of release. It was as if Surgeon B had taken a 10 stone weight from around my shoulders when she gave me that diagnosis. I felt light. I felt free. I felt vindicated.
I also knew that this new diagnosis would change the upcoming meeting that Hubby and I were due to have with Dr7 later that day. Instead of feeling anxious about how I would convince him of my sanity, I now had a diagnosis from a leading surgeon who acknowledged there was a cause for my pain and I was re-energised, ready to stand my ground.
I wasn't mad, the pain is not rooted in some underlying anxiety issue, it's in my bottom, just as I always said it was and I wanted an apology.
NB x
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