Expendable over 50 - 7 year wait for NHS smear test, now CIN3 and awaiting result of second LLETZ

Hi 551,

Yes, I’m very glad we moved. I doubt I’d have had a screening appointment yet if I’d still been back in Surrey.
I do agree with you about embracing your age. At every stage of my life I’ve always been happy to be the age I am - life is all about constant change and moving forward. People who try desperately to cling to their youth miss so many of the wonderful things about growing older. Which is not to say I have any intentions of sitting in a bath-chair with a blanket over my knees, yet - I fully intend to grow old disgracefully. And I intend to stay as fit as I can so that I can enjoy all life has to offer - yoga every morning, running three times a week and lots and lots of walking. I’m not slowing down - but I am going grey and I do have wrinkles and I don’t care - I’ve earned them.

It sounds as if you’ve had a hard time with the menopause. I’m lucky in that I got away with that very lightly but I do think it’s a neglected area - one of the ones where professionals don’t listen to what their patients are saying. For some reason doctors (male and female) just don’t seem to take on board some of the things we say. I won’t bore you with the details but back in the 80s I was being investigated for amenorhhoea and whatever had caused that had also caused me to lose weight (after my periods stopped), which was very scary. Seeing a thin young woman every doctor I saw assumed I was anorexic. No matter how many times I told them I hadn’t tried to lose weight and was really scared by the weight loss, they assumed I was lying. One even sent me for an ovarian scan to prove I was anorexic (apparently ovaries of anorexic women shrink). The scan showed my ovaries were normal size but I had polycystic ovary disease. When he got the result the specialist just said, “I still think it’s weight loss” and did nothing about the PCO. I wanted to scream - maybe I should have, perhaps then someone would have listened. Let’s hope the kind of hubs you mention get off the ground - at least there would be a chance of their being staffed by professionals who are prepared to listen to women.

Thank you for your kind words. I’m not overly anxious yet - just waiting for the next biopsy resuIt and enjoying life. I hope you continue to stay well and enjoy life too.

Janet x

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Absolutely Jacks133!
Sorry, I was a bit tired when I wrote that, and should have said that in addition to HPV going dormant and becoming undetectable for years that just cause you’re over 50,it doesn’t mean you couldn’t get a fresh HPV infection. Xx

Hi Janet,

I couldn’t agree more. Why are we considered old enough to work until 66 but too old for cervical screening?

I was diagnosed 7 years ago at 57 with stage 2b clear cell cancer.

I wish you well & I’m sorry you have had such a hard time being seen.

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Hi Ann,

I’m sorry to read about your diagnosis. I don’t know how things have gone for you since then but I wish you luck and strength. My health issues are, so far, much less serious but I just felt I had to say something about the way we are forgotten about after 50.

You are so right about the fact we are expected to work till 66 (fine if you’re in a desk job but harder if your work is very physical) but not considered worthy of screening. Then add into the mix that they don’t start screening for breast cancer till you get to 50 - where is the logic in all these policies?

Anyway, thank you for taking the time to comment on my rant and welcome to the forum. I hope you find the support you need here. All the best.

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I am so sorry to read your story. I think there are so many ways in which female health issues are neglected by the NHS and I am disgusted to hear that you reached out to our national health service and were rejected - what do we pay our taxes for then? It’s a shame that the NHS is not managed centrally and that local CCG’s (clinical commissioning groups) decide what level of care and types of medication are provided in different areas of the Country, so you are right that it is a postcode lottery. I had a smear test during the first lockdown and my GP surgery did not stop providing those sorts of services; I’m thankful they did as I also had HPV and was CIN 3. I had Lletz treatment to remove compromised cells. I am glad to say that a year later, I no longer have HPV. You can raise a complaint against a GP surgery (primary care) to NHS England and I would strongly suggest you do as this is the only way things might change. Good luck in your journey and keep fighting for your rights and life. No female should feel they are expendable at any age. I had a nurse in a hospital tell me that individual female lives don’t matter to the NHS and it’s only what benefits that majority that matters. I think this is a vulgar attitude but probably a reality of the NHS sadly. All lives matter at any age. Our NHS should not have an age limit on whether they provide care or not.

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I am now 58 and have received fantastic care from my gynaecologist for the last 12 years as during this time I haven’t had a clear smear test, positive for HPV and five years ago had a radical hysterectomy to hopefully clear but still go back annually for vault smear test. As still being seen by my consultant looks like I actually bypass the GP services which I agree leave a lot to be desired especially since Covid.

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Hi Deb. I’m glad to hear you received such good treatment and wish you continued good health. I agree that, once you get into the system, the NHS looks after you brilliantly. My only question is why the screening programme is stopped at 64 when the mortality rate climbs steeply after that age. I just feel that, if cases were caught earlier, not only would lives be saved but treatements would be easier for the women involved and less costly for the NHS.

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Hi Janet

I picked up on your comment in relation to Surrey. I’m in Surrey; I’m on Facebook for various health conditions and have formed the opinion that Surrey doesn’t seem to compare well with many other parts of the UK when it comes to NHS services!

x

Hi Jazza,

Yes, I was in Surrey. I’m not sure whether it was just my GP practice that was particularly bad, or the county as a whole. I certainly found that, with another health issue I have, once I had persuaded my GP to refer me to a specialist, I got good care at the hospital. The problem was persuading my GP that having a low white blood cell and platelet count was perhaps more than ‘just a virus’, as they insisted for six months. (Incidentally this was the reason for getting the private health check that showed the HPV.) The hospital took the problem seriously, did a spinal bone marrow biopsy, which proved non-diagnostic, and kept me under three-monthly review. My new local hospital were also very good about continuing to keep me under review with no interruption of care.

As I’d lived in Surrey for 35 years before I moved I was used to wheels moving slowly so it came as a surprise how quickly things happen in East Sussex. I assumed it was because there is more pressure on services in Surrey. Whatever the reason, I’m glad I made the move.

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Hi Janet

I’ve lived in East Surrey for 37 years so health service wise it’s all I know. I enjoyed pretty good health until my cc diagnosis in 2017 so it’s only fairly recently that I’ve become aware of some of the NHS deficiencies here.

I’ve got lymphoedema as a result of my cc treatment; it’s a progressive disease and ideally needs regular monitoring. I was referred to a lymphoedema clinic based in West Sussex; it closed in January and I was referred to a new provider based in East Surrey - I was due an appointment in March but I’ve yet to hear from them. I know from Facebook that West Sussex based patients, who were referred on from the closed clinic, are getting appointments and are happy with their new provider also in West Sussex.

Sounds like you made a good move.

x

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Hello everyone

Have you seen today’s post about HPV therapeutic vaccine trials? - Nuffield Oxford published an article announcing that at the beginning of July a woman was the first person to participate in the trial. I’m not very good at posting links but do look at the post - it may give some hope to us older ladies who are too old for the HPV preventative vaccine and of course to pretty much everyone on here! Love to all A x

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Hi A.

Thank you for flagging that. I googled it and it does look like a ray of hope on the horizon for us older ladies, as you say. Now we just have to work on continuing to be screened so that the HPV is found in the first place.

Hope you’re staying well and thanks again for bringing us a hopeful story.

Jx

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