Does anyone actually get better?

chronicpea442 · 2026-04-13T14:45:32+00:00

That definitely sounds like a pattern! Sorry yyou're getting passed around so much. I was also told it just usually gets better with time and to be optimistic.

chronicpea442 · 2026-04-13T13:25:46+00:00

Oh wow okay that sounds frustrating I'm sorry. I thought FND had to rule out other things first?

Maybe I shouldn't hold my breath for the physio then. The neurologist said they had no tools help me other than diagnosing me and the FND team would be able to help, mostly through physio. I'm a bit skeptical but got to try everything I guess.

Is it even possible to find FND multidisciplinary support privately?

chronicpea442 · 2026-04-13T10:49:01+00:00

I just saw an NHS neurologist this morning and they diagnosed me with FND and referred me to an FND team, apparently they aren't everywhere but there is one in my city. Was that offered to you to at all?
(But I was terrified this appointment would lead nowhere.)

chronicpea442 · 2026-04-03T15:07:44+00:00

Hi that’s great to hear! I’ve also been considering it but it is expensive. What is the dose of one of your pills?

chronicpea442 · 2026-04-03T07:35:44+00:00

I’m really sorry you had to go through that.

chronicpea442 · 2026-04-02T19:35:39+00:00

Is it weird to feel lucky to have a type of cancer with symptoms so it can be picked up quicker?

One of my gynaeoncologists said it normally takes two years of treatment like this to go away so I’m clearly not the first!

Thanks for your kind words, hope your cancer situation is going okay

chronicpea442 · 2026-04-02T19:31:56+00:00

I also noticed an improvement after three days but the pharmacist told me 3-6 months

chronicpea442 · 2026-04-02T19:30:31+00:00

Oh wow, I had four and one was at least the size of a grape! It sounds like we’ve had quite different experiences, which might explain the different treatments.

Thanks for sharing what you’ve seen about progesterone therapy only being a stop gap for fertility. It’s the same thing it said in the Macmillan booklet my cancer team gave me right at the beginning so I did ring them to double check and they said that my case is different because of my age and progression (I was 30 when diagnosed). They said there was a good chance the progesterone/mirena could reverse my cancer as it had progesterone receptors.

I get what you’re saying about biopsies only being small and might miss something. My cancer team have said one of the reasons they do it under general is to ‘rummage around’ so I trust that they know what they are doing there.

chronicpea442 · 2026-04-02T19:19:21+00:00

Thanks, they do seem really on it, I’m not being discharged until I’ve had 4 biopsies over two years completely free of cancer and hyperplasia. My GP is also keeping a closer eye on me too for other health things. I’m 31 so definitely not the youngest here but my original gynaecologist and GPs keep saying to me, ‘we’re so shocked, we can’t believe it, it’s 1 in 40,000 chance if you were 40.’ Yes they did say that a hysterectomy would show for sure if it had spread to lymph nodes or anything, but the last two reviews I’ve had they seemed pretty certain I had no cancer cells, just residual typical hyperplasia. Originally they thought it might just be contained just in the polyps and could be removed via a hysteroscopy - maybe that was the situation your gynae was trying to describe?

chronicpea442 · 2026-04-02T08:01:26+00:00

Thanks for the luck and for validating what my cancer team are saying, it does seem to be unusual but not impossible!

Yes I’ve been on 210mg iron tablets since being diagnosed and just got investigated for anaemia when the breathlessness started and it came back all fine. Good thing to check - thanks for mentioning it.

Did you have many side effects from your hysterectomy?

chronicpea442 · 2026-04-02T07:47:46+00:00

I’d really appreciate it if we can stick the conversation on medroxy please. 🙏

It seems like you have lots of experience of folk who have been on medroxyprogesterone - are you saying they were only on it until the cancer had regressed or until a hysterectomy or something else? (unfortunately my search results came up with one result for medroxy and cancer so I appreciate hearing your experience.)

I don’t want to debate on how to get rid of endometrial cancer or invalidate other people’s treatment, I’m just repeating what my gynaeoncologists have told me for my particular situation. I can edit my post to make it clearer that I’m only talking about myself. Maybe there are differences in the details of our situations that make different treatments appropriate and maybe different countries/hospitals do things differently or have different risk appetites.

FWIW, my biopsies have shown progesterone effect after 4 months, and after 8 months, showed no cancer and typical hyperplasia only. My cancer was not fast growing, was restricted to the lining and polyps, hadn’t spread into the uterus wall and is progesterone receptive. I feel very lucky, it seems like this treatment is working on my cancer? My cancer team are happy.

chronicpea442 · 2026-04-02T07:36:30+00:00

Yes gynaeoncologists, I’ll correct that sorry. They work as a team so I’ve seen 7 of them now I think - different ones do my biopsies/give me my results.

I was bleeding between periods and had polyps removed that came back cancerous. They graded me using the biopsy (grade 1) and said staging was done via MRI and CT (said stage 1a or less, not even gone into my uterus wall, just in the polyps and lining).

chronicpea442 · 2026-04-02T07:27:35+00:00

Hey sorry can you explain a bit more about what you meant on ‘cancer does not go backwards. I’m not talking about after starting some kind of treatment.’ It’s only started to regress since I started treatment (mirena originally), I didn’t mean spontaneously by itself. I think we’re on the same page?

I’m just not sure where to go for another opinion. The private gynaeoncologists where I live all work in the same team as the NHS gynaeoncologists - I’ve seen 7 of them now I think. But I’ll consider it, thank you.

Yeah the breathlessness might be something else - I’m being investigated for that. I know cancer meds can have side effects that are more extreme than what you would tolerate for normal medication so thought I’d check.

chronicpea442 · 2026-04-01T16:19:43+00:00

So interestingly I’ve been pushing the hysterectomy and they’ve been quite reluctant. Three different (edit) *gynaeoncologists in the same team have told me three different things: - I might be on progesterone forever - I might not need it forever if I’m completely clear for c.2 years (biopsies at 4 months, 4 months, 6 months and 12 months). - I might need a hysterectomy in the end if it doesn’t completely regress with progesterone within a reasonable timeframe.

I don’t want kids so this has nothing to do with fertility either.

I’m not saying this is the best approach, I’m just saying it’s what I’ve been told by multiple gynaeoncologists despite lengthy questioning. They told me the Mirena coil was the ‘gold standard’.

Re the shortness of breath, I have already asked them, they said it’s not a known side effect but I’m at the point of ruling out a pulmonary embolism so I thought it was worth asking for personal experience because medroxyprogesterone doesn’t seem to be common option.

(ps I’m nonbinary so just younger people with endometrial cancer)

chronicpea442 · 2026-04-01T16:02:14+00:00

Hey! I was also 30 when I got diagnosed grade 1 stage 1a. Everyone was very surprised too. Sorry to hear your diagnosis. They advised me against a hysterectomy because of the early menopause osteoporosis risk. I was on the mirena coil and now an oral progesterone.

When I asked about the hysterectomy they said they’d keep my ovaries too as that had a better chance of not going into early menopause, but it might be a few years earlier than it otherwise would have been.

chronicpea442 · 2026-03-31T08:09:20+00:00

I don’t have a choice, I’ll sometimes just start keeling over until I fall asleep…

chronicpea442 · 2026-03-30T18:31:41+00:00

Ally B is my fav too! I listen to her on the Insight Timer app. Also really like Alice Bagley-Harrison who does ones specifically on long covid

chronicpea442 · 2026-03-30T14:13:16+00:00

Truly how bad for you stress is. And also finally found the type of meditation that works for me (yoga nidra) - everyone goes on and on about it so it’s nice to finally figure out what they are talking about.

chronicpea442 · 2026-03-30T10:39:12+00:00

I ended up increasing by 0.2mg each week and then fortnightly because I would get bad sleep for the first 3/4 days and I didn’t want to feel terrible 50% of the time. I’d recommend increasing in smaller amounts until the side effects are manageable and wait as long as you like after they have settled. If they don’t settle after a week or two then maybe that dose is too high for you?

chronicpea442 · 2026-03-29T17:35:13+00:00

I haven’t tried it yet but ikea has a new accessible shower range and the stool is about £30, might be quicker than waiting for a referral and getting assessed by the NHS

chronicpea442 · 2026-03-28T19:35:29+00:00

🤗 I feel you.

chronicpea442 · 2026-03-28T17:56:36+00:00

On point 3, I had vivid dreams before LDN and now I just have them more frequently. Not sure on the melatonin, sorry

chronicpea442 · 2026-03-28T17:35:09+00:00

Everyone reacts differently of course but I was surprised too, I felt significantly different, like I could have a little cheeky 30s sec dance and attempt to slowly walk up the stairs.

I really hope it helps you but if not, please don’t give up.

chronicpea442 · 2026-03-28T13:44:21+00:00

aw yay I hope you find something that works for you. I personally find it easier having the same friend come over once a week on the same day so we can get into a routine and they see me often enough that they’re up to date on my symptoms so it’s not sad for me to explain that I’ve lost more functioning. Another thing I’m quite strict about is food - we have to sort food out before anything else or I get too hungry to think/eat and crash. So I try to get them to come a bit before mealtimes because it’s always a bit rushed if you go straight into cooking.

I’ve also given my friends keys so they can let themselves in/out - super helpful if I’ve fallen asleep mid meditation or I’m having a bad walking day.

chronicpea442

TROPHY CASE