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People stopped asking and I found that a relief

Started 26 September 2025 · 19 replies · 164 hearts · read 2.7k times

NilsUppsala, SE · 26 September 2025
10 months ago

Something I have been sitting with: People stopped asking and I found that a relief Not looking for advice so much as other people's experience.

I have been reading here for a few weeks and have not posted, so this is me posting.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

The thing that has surprised me most is how much of this is about other people rather than about me.

Thanks all. Genuinely.

55

RuthieLeicester, UK
#1

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

6

BunnyWeston-super-Mare, UK
#2

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

7me too 8

BenediktFacilitatorVienna, Austria
#3

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

15

Ozzy GWalsall, UK
#4

What the reply above described happened to me too, in a slightly different order.

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

11

NolanHalifax, CA
#5

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

7

GittaBonn, DE
#6

Building on what the reply above wrote rather than answering the original question.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

9

YannickBrussels, BE
#7

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

4me too 6

TedIpswich, UK
#8

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

10

TarnKeswick, UK
#9

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

7

SinéadCork, IE
#10

Yes to the burping. It is real, it is unbeautiful, and it does settle.

9

IzzyWatford, UK
#11

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

9

IvorLlanelli, UK
#12

Gently disagreeing with the reply above, or rather adding the other half of it.

Please do not read the comments under news articles about this. I lost a fortnight to that.

7

SaoirseKilkenny, IE
#13

Building on what the reply above wrote rather than answering the original question.

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

10

Gwen DAberystwyth, UK
#14

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

9me too 1

GilTel Aviv, IL
#15

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

8me too 6

TildaCambridge, UK
#16

What helped was lowering my own expectations of the week rather than trying to hold the week together.

7

RunaAarhus, DK
#17

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

10

BenediktFacilitatorVienna, Austria
#18

the reply above said something I want to sit with for a second.

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

11

BirdieMargate, UK
#19

I did exactly the same and felt terrible about it. You have not done anything wrong.

8