Hospital Appointment number... lost count!
On the 17 May, I had my long awaited follow up appointment with my consultant. This was the first time I had seen him since my surgery at the end of November last year. I wasn't entirely sure what to expect, but what I did know was that the operation hadn't given me the results I had hoped and my pain was still at an all time high. However, I wasn't expecting what he had to say...
The words "you may never get any relief, nothing may help you" weren't something that had ever been said to me before. Sure, I know that Endometriosis is incurable, its a chronic disease you get for life after all. But what I hadn't ever considered was the pain would potentially only ever get worse and never ease up. We go through all these operations, procedures and trialling various drugs to get that relief. And to do that we need the hope that there is light at the end of the tunnel to get us through the side effects and the recovery after each operation. Now all of a sudden theres a percentage of women who never get any relief from any of it and I'm potentially one of them! Where had this come from?! Having lived with this disease for many years, I know that you need hope to get through the bad times. And for me, those words were pretty much killing any hope that I had of living a reduced pain life, let alone a pain free life!
We spent the appointment looking for options and being reminded that we are "scraping the bottom of the barrel" for ways forward. Yes a hysterectomy is an option but my age is still a sticking point for Mr W and now he has put me in this bracket of potentially no relief, he isn't even convinced that taking my womb is going to help me. We spoke about trying unregistered drugs, drugs that haven't even been tried for Endometriosis but that could potentially help. (My personal favourite was one drug in particular that was used in another trial but had been stopped because x amount of women had liver failure from taking it. Yea, think I might skip that one!!) We also spoke about other things that could be contributing to the pain. A nerve receptor condition and urology issues were thrown into the mix. All of this new information was swirling around in my mind in a blur, I was just glad I took my Mum in for once so she could ask the questions that I was too baffled to ask!
I came away with a prescription for Norethisterone which I was advised to take daily. This one is used for Endometriosis but it was more for a tick in the box rather than thinking it would provide any relief. This week I've decided to stop taking it due to the side effects I was getting from it. Whilst I'm all up for trying new things for the pain, I would rather live my life being me, rather than a version of myself that I don't like or recognise due to the pills. It was also agreed that I would have a pain mapping scan which I have booked in this week. The idea is to prod at the different organs in the pelvic area and see which hurts the most. Sounds a delight. Along with these things I have an appointment with a second consultant in July to discuss her opinion on my situation and see if she has any bright ideas. If not, we will be looking for her to provide the second confirmation for the hysterectomy and to get the ball rolling on a date (even with Mr Ws new concern that it may not help).
All in all, it wasn't the most positive of appointments. The words about no relief stuck in my head the whole appointment and it was difficult not to leave the hospital feeling anything but disappointed and a defeated. We always say its the disease that keeps on giving but it really does wear you down over time.
Sorry its taken so long to provide an update but I've been focusing on Australia and the exciting times ahead rather than the negativity around my body! However, I'll keep you posted on the next couple of appointments. Who knows, maybe there will be something someone hasn't thought of... fingers crossed....
A x
The words "you may never get any relief, nothing may help you" weren't something that had ever been said to me before. Sure, I know that Endometriosis is incurable, its a chronic disease you get for life after all. But what I hadn't ever considered was the pain would potentially only ever get worse and never ease up. We go through all these operations, procedures and trialling various drugs to get that relief. And to do that we need the hope that there is light at the end of the tunnel to get us through the side effects and the recovery after each operation. Now all of a sudden theres a percentage of women who never get any relief from any of it and I'm potentially one of them! Where had this come from?! Having lived with this disease for many years, I know that you need hope to get through the bad times. And for me, those words were pretty much killing any hope that I had of living a reduced pain life, let alone a pain free life!
We spent the appointment looking for options and being reminded that we are "scraping the bottom of the barrel" for ways forward. Yes a hysterectomy is an option but my age is still a sticking point for Mr W and now he has put me in this bracket of potentially no relief, he isn't even convinced that taking my womb is going to help me. We spoke about trying unregistered drugs, drugs that haven't even been tried for Endometriosis but that could potentially help. (My personal favourite was one drug in particular that was used in another trial but had been stopped because x amount of women had liver failure from taking it. Yea, think I might skip that one!!) We also spoke about other things that could be contributing to the pain. A nerve receptor condition and urology issues were thrown into the mix. All of this new information was swirling around in my mind in a blur, I was just glad I took my Mum in for once so she could ask the questions that I was too baffled to ask!
I came away with a prescription for Norethisterone which I was advised to take daily. This one is used for Endometriosis but it was more for a tick in the box rather than thinking it would provide any relief. This week I've decided to stop taking it due to the side effects I was getting from it. Whilst I'm all up for trying new things for the pain, I would rather live my life being me, rather than a version of myself that I don't like or recognise due to the pills. It was also agreed that I would have a pain mapping scan which I have booked in this week. The idea is to prod at the different organs in the pelvic area and see which hurts the most. Sounds a delight. Along with these things I have an appointment with a second consultant in July to discuss her opinion on my situation and see if she has any bright ideas. If not, we will be looking for her to provide the second confirmation for the hysterectomy and to get the ball rolling on a date (even with Mr Ws new concern that it may not help).
All in all, it wasn't the most positive of appointments. The words about no relief stuck in my head the whole appointment and it was difficult not to leave the hospital feeling anything but disappointed and a defeated. We always say its the disease that keeps on giving but it really does wear you down over time.
Sorry its taken so long to provide an update but I've been focusing on Australia and the exciting times ahead rather than the negativity around my body! However, I'll keep you posted on the next couple of appointments. Who knows, maybe there will be something someone hasn't thought of... fingers crossed....
A x
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