To be struggling to actually trust doctors anymore?

[Thriwit]

I was diagnosed with a medical condition a few years ago. It interferes with my life a lot. It limits everything I do. My NHS consultant says he won’t operate, it’s not severe enough, I’m too young etc etc. He’s mentioned before that it’s not cost-effective at my age.

I know from being on forums for this condition that people in other countries with my condition and level of severity usually have the operation. I asked my consultant whether I should try private, and he said of course they’d operate, they’re happy to take my money. It’d likely fail within 10 years, then I’d need further operations. Tbh I’d happily take 5 years of relief at this point, especially while my children are youngish.

I feel like I don’t know who to trust. Is the NHS consultant just trying to cut NHS costs by not operating (& I know this happens, I’ve had a different speciality consultant tell me this about something else). Is a private consultant only interested in taking my money?

I just want a purely medical opinion about the best way to manage my condition, that’s not tainted by financial reasons.

AIBU to feel like I can’t trust any doctor to tell me the best purely medical course of action?

@Thriwit, I feel so sorry for you. I'm currently dealing with a grade 2/3 rectocele (breakdown of previous repair) and I know how horrible that is.
Have you spoken with your GP about the impact it is having on your social life and your ability to look after your DCs? Also have you spoken to your consultant's secretary to explain the impact?
If you've done all of that, it's time to ask for a second opinion - and don't hold back how you feel.
I'm currently waiting to hear what will be done as I recently went for a diagnostic physiology appointment and the practitioner told me she wouldn't got through with the test as I was too distressed. I'm in no-man's land, so can totally understand how you feel.
If you don't get any further on the second opinion front, you might get some help from PALS.
Don't give up - you deserve to be able to feel 'normal'. You know what I mean.

Thank you for taking the time and setting all this out. I think I’m getting a kind of pathway/plan together from all of this now, which is a huge relief! Unfortunately I’m nowhere near London, but Manchester should be doable.

I think I will go for private consult initially, for speed if nothing else. I’m currently supposed to have follow-up appointments every 6 months, but for the last few years I’ve had a 5-minute phone call every 9-11 months, so I just don’t think there’s the NHS capacity here (it is what it is!).

I truly am grateful for your posts, it’s very helpful having somebody set it all out like this. Thank you again!

Thankyou! And I know exactly what you mean. It’s been that long now, that I can’t remember what’s it’s like to just go to the toilet and do your business, and that’s that. 😅 I imagine it’s wonderful.
(I don’t expect surgery to get me back to that point, but being able to leave the house whenever I want/need to would be a wonderful start!)

Let me guess, your consultant is a man! I would ask for a second opinion, contact PALS and say you will be taking this further, it boils my piss when ‘women’s problems’ are ignored! Can you imagine if this was a man in this situation…it would be sorted asap. I’m having the same atm, my ‘issues’ being ‘we will wait and see’. I’m going for a private consultation as I’m sick of it!

Pay for a private consultation and see what they say. Don't forget most private consultants also work for the nhs. Choose one that does.
If they say you need to be operated on, ask them if you can go on to their NHS list, if they agree you'll have you're answer.
Personally I'd pay for the operation in anyway just to have it quickly and get my life back.

This. As the medic above helpfully replied, get a second opinion at the least. Sometimes doctors do not grasp the physical, social, emotional and mental toll an issue like yours entails. Best wishes.

You have the right to a second opinion on the NHS. Ask your GP for another referral. They should be very sympathetic.

Good grief!

It sounds on the face of it you do need the op. I would push for the 2nd opinion on the NHS while you get the private referral, and if your GP won’t do it try switching GPS.

Unless others agree there are complications that justify your current docs opinions then I would also put in a complaint.

I was also going to suggest the second opinion. The main thing is to do as much research as possible into the consultants who are within your range, and choose the one you think has shown particular interest and research into your condition. You are entitled to request a specific unit for the second opinion.

The only point I would like to add is that you need approach this consultation with an open mind. DF was ‘ offered’ an operation, didn’t want it , distrusted the consultant. He secured a second opinion at the ‘ best’ specialist hospital. They still recommended the operation, but they insisted on doing it themselves, with good results. The level of expertise was very apparent.

I do hope you get the best possible outcome OP. My heart bleeds for you. Xxx

A second opinion is always worth a try.
I have a completely different condition but for some years felt at odds with my consultant. My questions and concerns were dismissed with a metaphorical pat on the head.
Eventually I went to my GP and asked to be referred for a second opinion. I ended up paying for a private consult with another consultant in the same hospital. I avoided throughout to "criticise" my original consultant or to complain.
It went well and he agreed to take me on as one of his patients.

Yes, my consultant is a man!

I understand that I’m unlikely to die of this, and I am managing to hold down a full-time job, study, and look after my kids. Thankfully I currently have a very understanding employer and brilliant DH & family. So I get that it looks like I’m managing fine. Except I’m not really - it’s a truly miserable existence, I’m utterly fed up of being so limited, it affecting so many other people, and it dictating my entire life. Especially if there’s potentially a treatment (surgery).

I was having a cry to a work colleague/friend last night, and she thinks that our work BUPA policy doesn’t actually exclude pre-existing conditions! So I’m going to give them a ring and see. I’ve found a couple of consultants who seem to deal with this sort of issue.

Thank you to the posters pushing me to seek other opinions - I think it’s just become so normal to me to think that I am stuck like this that I thought I was being ridiculous.

@Thriwit, I don't have the possibility of private health insurance, so when I finally see my consultant (also a man), I am going to ask directly what he would say if it was his wife / mother / sister - safely on the knowledge that he would say to go the surgical route.
The NHS have let me down badly over the years (several traumatic stories to tell, but not relevant here) - one of them that is relevant though, it is that I wrote a letter to my then gynaecologist begging them to operate on my rectocele as it was supposed to be done at the same time as my hysterectomy and cystocele repair but wasn't. It's the only reason why I eventually got the first repair.
The system isn't just broken - it's also inhumane.

And just to add (sorry, I went off on a bit of a rant there), I totally understand how you feel. At my appointment with the physiologist I mentioned I spend far more time than I should thinking about my bowel movements, how it has deterred me from seeking a relationship (I'm single after a divorce a long time ago) and the impact it's having on my mental health. I only found out after a phone call that the physiologist has discharged me from their clinic, and referred me back to the surgeon.
I hope you get better results.