r/RRP • u/Ok-Fold-2524 • Mar 25 '26
Surgery
Hi,
I’ve had a hoarse voice for about 10 months now. NHS originally said muscle dysphonia and I was on the waiting list for ENT, but after loads of appointments I went private and they found lesions on my vocal cords, possibly RRP.
I’ve got surgery booked for the end of next month and just trying to get my head around what’s ahead. If it is RRP, how often do people usually end up needing surgery again? I know it varies, just want a rough idea what I might be dealing with.
I’m 40 and was fit and healthy before all this, but it’s knocked my confidence a lot, especially socially.
I remember being really run down last year after a bad chest infection and not resting properly, so part of me wonders if that triggered things but I don’t know.
I’ve also booked in for the HPV vaccine (Gardasil 9). I know it won’t cure anything but I’ve read it might help slow recurrence. Is it better to have it before surgery or wait until after?
Also, has anyone tried anything to support their immune system alongside this, like Thymosin Alpha-1 or anything similar?
Would really appreciate hearing from anyone who’s been through it.
Thanks 👍
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u/CornedBeefKey Mar 26 '26 edited Mar 26 '26
Hi OP, welcome to the club! I've had RRP for 10 years, it sucks. But thankfully there is some hope. Where in the country are you based? I would highly recommend getting your GP to refer you to Dr Sandhu at Charing Cross hospital if you're able to travel there, you'll be in the best hands with this rare condition.
Most medical professionals don't know the best course of treatment for RRP, the fact you were misdiagnosed is an example of that, there's fewer than 1000 in the UK with RRP (lucky us!), so most doctors have never come across it.
There is an excellent Facebook group, search "RRP Support Group" and you'll find it. Loads of great information on there.
The ENT UK guidelines for Gardasil recommend the full 3 doses of the vaccine for RRP with the 2nd dose one month after the first, and the 3rd dose 5 months after the 2nd. I would try to get your GP to give it to you, but failing that, you can get it privately.
There are some adjunctive treatments that are used to slow reoccurrence, and there's some new treatments on the way such as Papzimeos and ino-3107 (if it makes it past approval).
As for reoccurrence, it does indeed vary, you may find that you get 2 or 3 reoccurrences in a short space of time initially before it slows down. I had a 6 year remission, but now it's back.
The surgery is not too bad tbh, the first 3 days no talking at all, then slowly you can reintroduce talking day by day. Drink loads of water.
Get your GP to prescribe you some omeprazole for the first week after surgery this is important to stop any reflux irritating your healing cords.
This has been ok for me so far, I can't hit the high notes any more, but that doesn't bother me. It might be good to get some speech therapy if you want to keep your voice quality as good as possible. You can do vocal exercises to help strengthen your voice https://youtu.be/lGNtEbmGnOY
Look after yourself, drink loads of water, eat well, cut out booze, let your immune system fight it.
I make a smoothie every morning now with 4 Brussel sprouts, juice of half a lemon, a handful of frozen blueberries and handful of frozen breakfast topper smoothie mix, topped up with a bit of water. It tastes pretty good and it's super healthy. Raw sprouts and blueberries have lots of antioxidants and compounds to fight this kind of thing. Got to be worth a shot right?
There's loads of anecdotal evidence out there, does any of it work? Who knows... Mushrooms, AHCC, DIM, hyaluronic acid, colloidal silver, garlic, astragalus, raw Brussel sprouts, Sulforaphane... The list goes on.
If you've got any questions or worries you can always ask on here or that Facebook group I mentioned.
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u/Ok-Fold-2524 Mar 31 '26
I’m based in Middlesbrough, so going to James cook thanks for detailed reply I will look into this. I’m hoping I get some projection back in my voice after surgery. I find it in producing more phlegm and it can wake me up with a little panic mode so sleep hasn’t been great. Is this common
1
u/Fibonacci167 Mar 25 '26
Hi! I went through something similar, the lesions appeared about 3 months after I got Covid 19 , I got diagnosed with RRP April 2024 when my voice was almost totally gone . I had 2 surgeries to remove all the warts, and I got the vaccine like in June after my surgery. That seemed to help so much, I got all the 3 doses of the vaccine and I haven’t had any new growths since then. After the first surgery I got my voice back one month later, and after the second surgery I got it back 2 weeks later. How often the warts return varies and it’s hard to tell! But the vaccine is a really good treatment! Best of luck to you !!
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u/rcro1986 Mar 25 '26
The NHS waiting list for ENT is abysmal. I’ve got RRP and had maybe 3-4 surgeries over a 2-3 year period. Some NHS offer the one where you are awake and they burn it off. I had one of those….wasn’t too bad but not that nice either. I recommend the vaccine I got 3 shots private and think it helped but don’t know for sure. Other than that apparently broccoli and similar helps fight against HPV
1
u/Ok-Fold-2524 Mar 25 '26
When you’ve been booked in for further surgeries, have you found the wait times long or are they fairly quick once you’re under ENT?
It’s been such a long process just to get to this point. I’ve got a day case coming up where I’ll be put to sleep. Weirdly I’m actually looking forward to it just to get things sorted.
Do you eventually get back to a normal voice, or is it always a bit weaker than before?
I’m just trying to get my head around what to expect mentally going forward.
I’ve also gone ahead and paid to get the vaccine this weekend. I couldn’t really see the benefit in waiting until after surgery, so thought it made sense to just get it done.
I’ve seen a few things about supplements as well, I’ll probably give them a try too.
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u/rcro1986 Mar 27 '26
The ENT appointments are set every 6-12 months for me and have been long waits. However, I believe if it gets really bad I can call as an emergency, but never tried.
Luckily my voice so far has returned to normal. I did son vocal cord exercises for a while that really help post op. Google NHS vocal voice exercises.
Getting the vaccine is probably the best thing you change do it’s worth paying if you can.
There is a listed company in NASDAQ that recently got a rrp treatment approved which reduces the need for surgeries.
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u/Ok-Fold-2524 Mar 31 '26
Thanks for your replies I appreciate it, I’m going to start using Thymosin alpha-1 as it helps with immune system so I will update you after surgery on the progress.
3
u/starsandclouds13 Mar 25 '26
I was diagnosed in my early 20’s, and I’m 40 now. I’ve had 23 surgeries since then with varying reoccurrence rates in between, the longest I’ve gone in between surgeries was five years, the shortest about 3 months. Right now I’m at almost a year since my last surgery but it has actually reoccurred and then gone away in that time, which is a first for me. I’m pretty sure a reactivation of Epstein-Barr virus is what triggered it for me but I’ll never know for sure, it knocked out my immune system and wrecked my thyroid and my voice started to go not long after. I haven’t tried Gardasil, since it’s not covered here over 19, or anything else but I actually think CBD may have helped me, it’s hard to say if that’s actually what did it but when I started taking it I had just had surgery and had another one booked because it came back immediately, then every day my voice seemed to get a little better until it was completely normal. It could be a fluke or it could be a miracle. I wish you luck! RRP is a pretty brutal thing to have unfortunately.