I never thought this moment would come but I've reached the final point of desperation.
I've been sick for a while now, and at this point, I don't have a life any more. Every second is pain and anguish. I've got lots of different symptoms, some of which I'm too ashamed to talk about.
I need surgery. They've tried everything here already and I'm doing worse and worse. Apparently, I've got a progesterone allergy as well. My body itches and aches every day all day. Life feels like hell.
I can't afford the prices here in the UK, and I think that if I wait just a bit longer, I won't be well enough to fly anywhere.
I came to this country from the other side of the world to work on science. I got my dream job here, and was very happy about it. Sadly, science doesn't pay well, and after trying to go private, I've learnt how difficult it can be. I pay a health surcharge with my visas to use the NHS, but I'm getting no care.
I've got no relatives in this country, and the ones I have abroad can't help me at all. My father is sick and old, and I'd like to get the chance to see him once more, but in my current condition, there's no way I can travel that far. I had a few friends here, but after being housebound for a while, I've only got one left.
I know we're all dealing with this condition, and we all need care, but at this point, the word "desperation" can't describe what I'm feeling any more.
Thank you.
Written by
JustPain2
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Unfortunately these days we have to push to get help. You’re paying and entitled to help, it’s going to be determination and tenacity with your GP and consultant. What medication are you on? Have you been referred yet?
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I've been on different medications. I had a severe allergic reaction to Norethisterone, but the immunologist said a Mirena coil shouldn't cause the same issue, but it did and still does. My body itches all day every day, and the pain is still constant. They've prescribed naproxen and codeine.
A gynaecologist saw me last November, said he was going to put me on a waiting list for surgery and that he needed to see me in two months. He forgot to put me on the list, I was finally added at the end of January after complaning a lot. It's very difficult for me to chase them because of my current situation.
eThere were no appointments available until April, but because of the strike, my appointment has been moved to the end of August. I'm housebound. I have diarrhea every day, I throw up every day, I have PGAD now likely because the extra tissue is pressing a nerve, I can barely walk.
I insist and insist, but no one listens to me. The gynae is still like "mm, it seems like this might be affecting your life". I have suicidal thoughts every single day, have lost my friends, can barely keep a job. I'm going crazy. If I couldn't work remotely, I'd be homeless at this point.
so sorry your appointment has been postponed, let them know you can do cancellations and ask if you need to phone regularly to check or they keep a list. Even if they told me they kept a list I’d still phone occasionally. Suggest you do pre op now so everything is in place for a cancellation, works well.
Speak to your GP as well, they gave the ability to contact Gynae and make it more urgent. Explain how you feel with the pain. I’ve felt the same and told them so several times. If you know there is nerve damage I’ve found Duloxitine best for that type of pain and I still take Oramorph when that doesn’t work as much as I’d hope. Plus paracetamol.
Your GP can also refer to the pain clinic as urgent, but honestly my GP could’ve provided the same meds straight off. They don’t like to start things like morphine capsules but Oramorph works just as well for me.
You’re doing well to keep working, huge plus point 🙂 it’s not easy.
The forum is great to vent/chat as well.
I’ve spent a lot of time in the last few years pushing so please ask away, I’ll help if I can. I’ve had four ops since 2020
I've phoned the surgery three days in a row now (I mean Thursday, Friday, and today), and they keep saying a GP will phone back during the day, they never do.
On NHS Mental health services website link Urgent helpline. Think if you speak about your suicidal thoughts with them, they must contact your GP and it should help with your appointments .
Was thinking myself to take a loan for operation, but I know I can’t pay it back 🤷♀️
Yes, Mental Health services were recommended to me a while ago. I had around six sessions in which I'd be asked to keep track of all my activities: what I was doing, where (always at home), with whom (always alone), how long, pain level. It was very difficult for me to keep track of everything, even though, during that time I'd be sleeping most of the time. I guess the issue was that my internal clock is completely messed up, so I would be in a zombie-like state, eating at 2 am, barely managing to stay awake and on autopilot, working at random hours as well. Keeping a register of everything, so they could try to find a pattern (for example, you did X, X increased your pain, don't do X) was very difficult and didn't help at all as there's no pattern to my symptoms, not even my menstrual cycle. Every day feels like hell.
I was then discharged and sent to regular counselling. I'm still attending those sessions (which of course happen remotely). It's an hour every two weeks, but I think they feel sorry for me because they know I wouldn't be so depressed if I didn't have all these symptoms. I'm in bed today and thinking that I actually need a wheelchair at this point.
I can't afford surgery either, even less if I may need several. My concern, though, is that no one is helping me. A GP (can't say my GP because I haven't spoken with her in ages) has sent a letter to the hospital, I've contacted the gynae as directly as I can, I've been phoning when I feel well enough to do it (because you probably understand that having to chase people when you're feeling this badly and still trying to work and feeding yourself, etc. is not easy at all), but I've got no response so far. I sent a request through an app they use so they could move the appointment I was supposed to have last week forward again, nothing.
My concern is that if I wait too much, I won't be able to go abroad either. And then I'll be trapped with no help from the NHS and no possibility of ever affording surgery here.
I can apply at the end of this year, but it costs £2,400. I've already spent more than £5,000 on visas. I came here because I had a dream. I work on scientific research. Most people who work on science do it because it is what they love to do, but it doesn't pay well, and there were no projects as important as the one I'm working on there in my country. It was difficult because they had to prove there was no one already in the country who could do this job before bringing me here.
I've thought about getting surgery in my country but tickets cost around £1,000 at the moment, and would need to travel for an entire day. If you want a good doctor to see you, you have yo go to a good clinic where staying the night can cost from £600-£1000. The surgery price may be higher than in Romania. ☹️
I'd have the money if visas weren't so expensive... But I never thought I'd be in this situation, and I always assumed the NHS would help if I required medical treatment. I'm not from the most developed country ever, and was always told that things in the first world were different. Sometimes I wonder whether staying here is the right choice, especially if I may need more surgeries in the future. This country needs more workers, but the rules are making it so hard for them to stay.
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