Really need someone

[Bel04]

I really need someone to talk to.

Can you explain more? Or do you mean in real life? Talk to me in the meantime

I just really need some help. I've been asking for it. I've literally had to tell multiple doctors that my constant pain (going on for months and months now) has now got to the point where I'm suicidal. I wrote a suicide note several months ago. What stops me acting in it is that I don't know how much of which drug(s) to take. I don't want to end up in a coma. Last thing I need. Just want my suffering to end. Been chasing Drs for months and months. Last encounter I had (after waiting months to be seen) was with a consultant and I left the room shaking and crying. I was a strong person before my constant pain began but it has completely broken me. He said extremely hurtful things to me and was of no help medically whatsoever. He said I had "some kind of syndrome" but wouldn't elaborate. Questioned why I was ill and called me a "young girl." He also told me to "go and make your own test and you'll be a millionaire" when I asked about testing to find more out about what could be wrong. He was so cruel, I put everything I had into not crying until after I left the room. He did an internal exam and started accusing me of having "googleitis" when I asked questions. He wouldn't listen to me explain my full symptoms, pain and failed treatments. When I told him I was having suicidal thoughts and I was extremely scared he did not even look at me. At the end of the meeting a nurse who was present told me to leave. I was completely dumbfounded.

I've now had to book a private appointment the first of which is going to cost £225. I'm terrified that I'll just grab a box of pills and down the lot because of how overwhelming and unrelenting this severe discomfort and pain is.

The issue is I'm 18 (I have no kids but joined this site after it was recommended to me by my boyfriend Mum). I've had very few jobs (3) and was payed very little. I stopped working completely about 8 months ago to focus on my A Levels which I am now unable to complete because of my constant pain. I am a shadow of my former self. I had written to letters of complaint regarding the Dr I saw previously and wasn't even able to get to the post box today to send them. Instead I had to crawl into a boiling hot bath and cry. Not even the codeine they gave me at the hospital helps. It just makes me sick.

My family are reluctant to give me any money. Unfortunately I have had to stop speaking to my Dad. He is an alcoholic and has been both physically and verbally abusive even when he is sober, trying to break my arm, calling me a cunt on a daily basis etc. He also hurt my brother but they still have contact. My mother is mentally unstable and I suspect she has OCD. She spends many hours of the day cleaning, showering multiple times everyday, going into fits and shouting words repetitively when something isn't quite right and how she likes it. I understand that she probably has a mental health condition but it is still very difficult to deal with when she won't acknowledge my pain and would rather spend hours scrubbing her floors with vinegar. She even told me I was "ruining her life" when I came to her crying and asking for help with the pain as I just don't know what I should do. It is very persistent and intense like a nerve type pain. The pain seems to be stemming from my bladder but I am unsure.

I have a lovely boyfriend but he seems very wrapped up with work and won't travel to come and see me often. I also feel that he has become tired of my pain. (As though I haven't 🙄.) he often asked what I'm doing today etc like the answer isn't obviously "writhing in pain and trying not to cry."

Because of the issues my mother and father have, I decided I'd spend some time with my uncle after he offered. (He knows his sister has some issues.) Regrettably, I discovered he is also an alcoholic drinking even more than my Dad. Every single night he came home from work and drank a large bottle of spirits (Jack Daniels/Vodka etc) to himself. At first I couldn't understand how he want on the floor paralytic from the vast amounts he was drinking. He is thankfully not an angry drunk but would ramble a lot and was also falling over etc. He also got very rough with his Rottweiler and she was whimpering but I was afraid to say/do anything as I didn't want him to get angry with me as I have experienced with my own Dad. I feel guilty about this.

I'm now staying with my Nan who is a lovely woman. She has a rare genetic disease which has affected her kidneys so is at the hospital for 18 hrs a week getting dialysis. She has a fish called Cassius but no other pets. My mum and Dad won't allow any pets. Although the evening at my uncles house were unpleasant as he would always get so drunk I did very much like his dog LuLu. I have found the company of animals to be invaluable with helping me deal with my pain and discomfort, especially cats and dogs.

I have a very small sum of money in a trust which I opened after I became ill and was not getting any help on the NHS. I am trying to get some counselling (free of charge if possible) because of the detrimental effect the pain and loneliness that come with it on my mental health and the persistent suicidal thoughts. I am terrified that I will end up dead as a result of no treatments being given to alleviate my pain. I try to remain positive but at some moments an overwhelming feeling washes through my whole body like a ton of bricks falling on to me and my chest feels like it's tightening and I get very sharp stabbing pain (I think in my heart?). Sometimes I struggle to breath and I can only compare the feeling to that when someone very close to you has died. At time like this I find myself pleading no one at all to stop my pain and adding up how many milligrams of pills I have at my disposal.

I cannot believe how many times I have called Samaritans in the last few months. The people are always increasingly understanding and helpful I only wish there was more they could do in the long run. I've spoken to Drs and called mind but I can't seem to get access to any help. I was also prescribed Amitriptyline for the pain (which unfortunately isn't working thus far) but does have the effect of increasing suicidal thoughts etc in the first four weeks of taking it. I've been taking it for just under a week and am very afraid of this drug worsening my suicidal thoughts and perhaps driving me forwards into acting on them as I have so nearly done multiple times in the last few months. I don't know if it is safe to be taking the drug but I'm so desperate to relieve my constant pain that I cannot stop myself from taking them.

The NHS page for managing chronic pain said staying at work and exercising were useful but for me both are out of the question. I've looked for online work as I thought I could do this from Home on a laptop and still use heat pads, take breaks etc but haven't been able to find anything. I know I will not be able to exercise as even a two minute walk and bus journeys have left me with even more severe stabbing pains and I've had to sit down and just breath. It definitely feels like something is very seriously wrong in my lower abdomen.

I'm becoming increasingly isolated from everyone and miss going out (as I use to go out somewhere almost everyday, travel a long distant to and from my college, visit my boyfriend, go out shopping/cinema/museums etc.) I was always dragging him around to different places. Now I can't do any of the things I used to love. :(

Basically I'm just stumped and need some help/advice x

I’m so sorry you’re going through such a hard time with nobody helping you or taking your problems seriously. I’m afraid I was going to suggest Mind or the Samaritans but I see that you’ve already tried both of those. Or perhaps taking someone along with you to your next appointment - if you could get your boyfriend to accompany you, you might get taken more seriously, sad to say.

I hope someone with more useful experience will be along shortly but in the meantime I just wanted you to know that someone is listening

Thank you, it really does mean a lot to just have someone to talk to sometimes x

Luckily I think my boyfriend will come with me to the appointment as it's in the evening and won't affect his work

Bel I didn't want to read and run. This sounds horrific for you.
Sadly being 18 and a woman makes it easy for people not to take seriously when it comes to undiagnosed 'pain'. Is there someone in life you can trust like a manager from work, a neighbour with a strong voice? Anyone that can accompany you to the doctors and speak up and demand a different doctor from the practise ? A second opinion?

I'd say there is a positive
That there is an area (your bladder) where the pain radiates from but I suspect you
Need keyhole surgery to investigate with a camera and that's when you need to ask for.
Have they even given you a blood test?

Hugs in the meantime -
Sounds terribly hard .

I'm also worried about the issue of sleep. For the first few weeks of pain and discomfort I was unable to get sufficient sleep, maybe 1-1.5 hrs a night. But I also had some sleepless nights. I was pretty deranged and started to think it wasn't real life and I was in a nightmare. Thankfully I was prescribed zopiclone and it's helped a lot but I am only supposed to be on it for four weeks and have already been taking it for a long time. I am very scared about what will happen of this is taken away from me and I have not other means to help me sleep through the pain and discomfort.

I’m glad your BF will likely come with you. It’s crap but most often having a second voice (especially a male one ) means you are taken more seriously.

There’s nothing more frustrating than knowing that there is something wrong and not being listened to.

It’s hard being assertive but maybe you could try practicing saying things like “I insist that I am referred to a specialist to investigate this pain, as it is seriously affecting my quality of life and making me feel suicidal” or “I am in pain and I feel that you are not taking it seriously - who can I report this to?” etc so that if it comes to it you don’t feel as wobbly asserting your right to be examined and diagnosed. If you’ve practised saying the words it may be easier to say it loud.

And make sure you get those complaint letters sent ASAP or perhaps see if there is an online portal for complaining about the treatement (or lack of) that you’ve received. Being fobbed off repeatedly and patronised by the people who are being paid to help you is not on. Try and channel your anger into action.

Is there anyway that you could change doctors? You should not be left feeling this way, I am shocked at the way you have been treated. I am sure others will be able to advise you better, but please stay strong, there are people out there that can help. X

Yes you need to 'formalise' all
Of this and start using 'formal ' language with this doctor about how you are
Going to document things in a formal complaint - your situation is being trivialised and you object to
How you are being treated. You
Want your thoughts on record. Etc etc
All Of these things will
Make the doctor I question sit up and pay attention.

Another person listening to you and hearing you. I'm sorry I cannot offer any advice. You seem to have so much to contend with at such a young age.

I would suggest you change your dr and find one who will listen to you and take tour symptoms seriously.

I think your family, except your Nan, are toxic and think you would be best placed to keep as far away as possible.

At 18 I don't know what help there is out there. Counselling, benefits?

I wish that you find the strength to find a way through all this. X

It's so upsetting and frustrating when you feel no one is taking you seriously, you shouldn't have to pay to see a private doctor but if you do then I hope they can support you and give you some answers.

I've been there. I'm not out the other side yet (but here's hoping!) and maybe can PM you? Where are you from?