Nasal Polyps

[KlimtMuse]

I've had these for a long time and it's miserable. Sleep is difficult as my nose gets so blocked and my mouth is always dry. I feel like I've got a full-blown cold half the time and have no sense of smell (at all). I take Mometasone (spray) but I'm pretty sure it's giving me nasty headaches.
I saw a consultant and had scans that showed multiple polyps. He advised me I could have surgery but they might well grow back again.

Has anyone gone ahead with the op? What was your experience?

I’ve had the surgery 4 times and desperately waiting for the 5th. I’m fine with the op, it’s a two week isolation period after it. I feel it’s definitely worth it as I get at least two years of feeling so much better.
Polyps rule my life, I don’t want to eat with friends as I’m so snotty. I’m on prescription antihistamines and steroidal nasal spray. I use Otrivine if I’m going out but this can’t be used continuously.
My sense of smell hasn’t returned after any surgery and I miss that.
Oral steroids really shrink the buggers
and I’d like them twice a year but GP says no as I’m diabetic and steroids raise blood glucose.
Some people’s don’t grow back after a few surgeries but most do.
My concern now is if I still need the op every 4 years is how I’ll cope when I’m older. Also will the nhs fund it.
I’d say it’s worth having done. The worst bit is removing any packing from your nose post op but most surgeons don’t pack anymore. It’s usually done as a day patient case too now.

I had them dissected out more than ten years ago. An overnight stay in hospital. All very straightforward under general anaesthetic. Surgeon had done about 800 previously which was reassuring! Needed to wash out with saline for a few days after. Consultant prescribed Nasonex for life to reduce mucous formation which worked fine. I'm now on Avamys spray. They can return - my consultant saw new polyps a couple of years ago and prescribed the steroid drops which seemed to shrink them. No real problems since except blockages due to bad cold which cleared OK.

I have a different nasal issue that was operated on 10 years ago, and while it was being investigated I spoke to a couple of friends who had other nasal problems.

One who has polyps is on long term nasal steroids, Fluticasone, like me. Anyway he had an operation to have his shaved off and was warned they may grow back. 12 years later he hasn't yet had another operation and is able to do things like normal. He can also smell. He no longer sounds nasal.

He had his done through private healthcare so was treated within 4 months. (I think the ENT waiting list is longer in his area as I was treated within 4 months after a 4 month wait.) He found the operation quite brutal due to the bloody nose and healing afterwards. His was day surgery under general anesthetic. (To be fair they do most ENT as day surgery if they can.)

That really sounds full on. Great to have the two-year relief but what a pain to go through surgery repeatedly. I guess the fact you're prepared to does prove the relief must be huge!

I often wonder if I should try cutting out dairy or other foodstuffs. Have you tried any of that?

800 operations under his belt would be reassuring! Good to hear you've found relief. Did you find the surgery very painful?

I don’t eat much dairy, soya milk and very little bread so little butter. Hardly any cheese.
Sulphites are the worst so I can no longer drink white wine (my fave) or beer. Some cavas are low sulphite so I can have those.
Honestly my life is ruled by the polyps. One nostril is almost totally blocked and I can’t blow that side but it will spontaneously drip, I have to sleep with tissue stuffed up it, sometimes in the daytime too. Sinuses are full of polyps too so permanent low level pain which can increase.
sorry for moaning, I’ll buy a lotto ticket and if I win I’ll pay private.

Honestly my life is ruled by the polyps. One nostril is almost totally blocked and I can’t blow that side but it will spontaneously drip

Same with me, along with the back of the throat drip. Sense of smell and taste comes back sporadically but regrettably, looking at surgery again.

Just for balance I wanted to let you know that I had surgery about 20 years ago and I'm glad I did. To my knowledge they've not grown back (or if they have I don't notice it) and can breathe normally ever since.

I've been using a mix of both otravine and steroid nasal spray for mine for the last 10 years.

It's annoying first thing in the morning but a combination of both of them works for me.

Good to hear. I'm thinking I should give it a try, hopefully nothing to lose...

I’ve had three rounds of surgery, mine recur unfortunately. Last time I went to ENT they said the NICE guidelines had changed and that I was now recommended to have a quarterly tapering dose of steroids. Mine are part of ASA or Samter’s Triad, I am also asthmatic and developed an allergy to aspirin. I was desensitised to aspirin about 10 years ago, after my last surgery, it’s helped a bit, but not as much as I’d hoped. I am about halfway between doses at the moment and pretty miserable with it. I’m okay if I’m well, but if I’m unwell or have Hayfever it’s horrible.

@autumnboys i too am asthmatic, I’m intolerant but not allergic to aspirin. Unfortunately I can’t have steroids routinely due to having diabetes. Wish I could.
Had steroids for Covid and polyps shrank but back again.

I too have mild asthma - late onset - and have an allergy to aspirin. Can you explain the connection? I mentioned it to my consultant as I heard something about this being connected to loss of smell but he was dismissive.

I’ll try and come back with more detail tomorrow, but have a look at this and see if it fits. My asthma is mild and late onset. I wasn’t allergic to aspirin as a child, was told not to take it once the asthma was diagnosed around 2000. I accidentally took an aspirin 13 years ago, had to be blue lighted into hospital.

www.healthline.com/health/samters-triad

Sorry to hijack but I’m sure I have this - my nose is always either blocked or running, constant post nasal drip which makes me cough - but I can’t get a doctor to physically see me! It’s worst in the morning first thing, and I often wake up with a sore throat. Does that sound about right? It’s been going on for two years now.

I have a steroid nasal spray and antihistamines on prescription, but it’s all been over the phone. I’ve got another telephone appointment next week as it seems to be worse since the weather got colder.

Another Samter's Triad sufferer here. Two polypectomies, last one 10+ years ago. The op isn't at all painful, but I found the nasal unpacking very unpleasant. Taste and smell returned after a couple of weeks, only lasted for a couple of months and then the polyps returned with a vengeance. I won't be doing it again.
My current regime is Nasonex and preventer inhaler twice daily, as well as Neilmed sinus rinse. That helps with the worst of the symptoms (most of the time) but makes no difference to loss of taste or smell.
A couple of years ago, my ENT consultant prescribed a 2 week course of prednisolone along with 6 weeks of fluticasone nasules. Within a few days, I felt completely cured - it was simply miraculous. Yes, the effects wore off after a few months but at least I hadn't had surgery. Since then (supported by a letter from my ENT consultant) I request a prescription for prednisolone/ fluticasone from my GP twice a year. The GP isn't keen and I understand the risks associated with steroid use but, quite honestly, the absolute joy of being able to breathe, smell and taste properly is worth just about anything.
I can't understand why a c

.....I can't understand why a consultant would dismiss the connection between Samter's Triad (ie nasal polyps, asthma, aspirin sensitivity) and loss of smell/taste, but I do know there's not always much appreciation of the impact on quality of life - so please persevere and don't let an unsympathetic medic make you doubt yourself. I hope you find a treatment that works for you.

Yup, could be polyps for sure or allergic rhinitis - which is often accompanied by polyps. It's miserable, isn't it. Hope you can see a doctor soon.

Thanks @autumnboys , very helpful. I definitely have the classic symptoms. My doctor was dismissive of the aspirin therapy and seemed sure it wouldn't work so I've just assumed there's no point in trying it.

@NoIDontHaveABloodyCold - Perfect user name! I get asked about the cold all the time Interesting to hear about your experience with the op. Two months sounds rubbish!
Re the steroids... what are the risks twice yearly? I know about the weight gain, has that affected you at all? But yes, to breathe easily again, and smell and taste would be heaven!

My consultant wasn't dismissive of the condition as such, it was more about the desensitisation therapy. He wasn't interested in discussing that at all...

Re the steroids... what are the risks twice yearly? I know about the weight gain, has that affected you at all? But yes, to breathe easily again, and smell and taste would be heaven!

Honestly, the first time I broached the twice yearly thing with my GP, you'd have thought I'd asked for crystal meth. To be fair, I am menopausal so perhaps osteoporosis was a concern. Luckily my ENT consultant was a bit more relaxed/understanding and wrote a supportive letter, so now I don't have to beg/cry/rob the chemist! No weight gain either (other than from the obvious effects of snaffling everything tasty within 100 yards!)

My consultant wasn't dismissive of the condition as such, it was more about the desensitisation therapy. He wasn't interested in discussing that at all...

I've seen people on various forums saying it helped them, but not pursued it myself. I haven't read anything to suggest it's risky or harmful, so I guess it might be worth exploring, even if this particular consultant isn't a fan.

There are a few nasal issues that can give you that not just polyps.

If the nasal steroids and anti-histamines aren't working asked to be referred to ENT. (You may have to fight for it.)

A GP doesn't have the equipment to have a good look down your nose and throat.

I had the operation 30 years ago and I've had a nose bleed ever since as one nostril never healed.
I need to have them done again but I'm dreading it, I hated them taking the packing out and I had two babies with no pain relief!

@RedWingBoots the doctors won’t see me at all so I don’t think there is much chance of a referral! I think they only see urgent people in person now.

In fairness I was doing much better until the weather got colder (I’m in Scotland) so I think it must be linked to that - maybe even heating being on. I also suffer with acid reflux so I think that has a hand in the mix too.

That sounds terrible! I guess it’s still been worth it though if you’re prepared to go through it again.

I must admit, the packing sounds horrible!

Having had the op three times, it can vary even for each perso . My first one, amazing! My polyps were actually completely filling my nose by the time this happened. You could see them if I tilted my head back a bit. We’d moved about a year before and people didn’t recognise my voice post-op.

Second one was horrible. They tried to break and reset my deviated septum, I had a lot of post op bleeding that made me sick. Having the packing out was awful. They only had medical gloves filled with ice tied off and frozen and they hurt and weren’t effective.

Third op was in Addenbrookes. They used a gel to seal everything post op, no packing. I tried a homeopathic remedy for post op bleeding and general. Which I think helped, or maybe it was only placebo, but either way.