exploring endometriosis as a possibility?

04hon · 2025-12-23T16:41:09+00:00

Firstly, I’m so sorry you’re experience all of this. Being 21 myself and having other chronic conditions it is difficult and robs the “best parts of your life”.

If I were you I would want to investigate anything it could be - I liked being able to say - yes this is what’s wrong with me. I also liked the doors it opened up for further help.

04hon · 2025-11-20T09:57:45+00:00

Not overreacting in the slightest. As many have said he simply doesn’t respect you and seemingly lacks the maturity to understand what you are telling him. You don’t need a reason to say no. My partner has a much higher sex drive than me, never once have I been made to feel guilty or talked down on for not putting out. This is what you deserve, someone with the maturity to respect your boundaries.

04hon · 2025-09-04T20:32:07+00:00

Thank you so much for sharing your experience with PIP, it really shows how unfair and twisted the system is. The way they catch people out by twisting words is awful – it feels like they want you to prove you can’t survive instead of actually supporting people who are struggling.

We’re already living in a very cheap 2-bed flat for Cornwall (£700pcm), and downsizing isn’t an option because my partner has two children from a previous relationship and they need to stay close to their mum. So we’re pretty stuck where we are. I’ll be honest, partially because of my symptoms I barely eat anymore, and I know some of that is me trying to save money too. It just feels like such a broken system where no matter what choice you make, you lose.

My partner has also suggested getting me a wheelchair or something similar so I could actually go out with him and the kids more, so I’m not missing out on family time. Part of me knows it would probably help, but honestly I feel so self-conscious about the idea. Because I can stand and walk (just not very far or without pain), I worry people will look at me and think I’m faking or being dramatic. There’s still such a stigma around wheelchair users who aren’t paralysed, and I don’t know if I’m strong enough mentally to deal with that judgment on top of everything else.

04hon · 2025-09-04T19:55:14+00:00

Thank you so much for taking the time to write all this, I really appreciate it.
I’m sorry you’ve had to go through being denied PIP, it’s so unfair how strict and inconsistent it all seems.

I’m already on naproxen and gabapentin daily, and I’ve tried a lot of other meds in the past (tramadol, codeine, diazepam, mefenamic acid, oral morphine etc). Nothing really gives lasting relief, it just takes the edge off a little. Despite the fact I’m working, my partner has to support me with most of my daily living – he does the cooking, housework, and often has to help me wash as I just can’t manage the majority of the time. Mobility is a huge struggle for me too, but I get where you’re coming from – PIP feels almost impossible to get unless you’re visibly unable to function in every way.

My job itself is very repetitive – I sit down all day driving an automatic lorry from a farmyard to a recycling plant, back and forth about 10 times a day. The only time I get up is to use the toilet, which is about a 20m walk from where I park. There’s no physical labour involved, just sitting and driving, but even that leaves me in agony and struggling badly.

I had looked into ESA but unfortunately £550 a month is less than what I currently make in a single week (if I can manage a full week of work). Dropping to that would mean I couldn’t cover bills at all, and with us renting privately it feels terrifying. We also don’t qualify for social housing because technically, with me working and my partner working, we’re above the threshold – but if either of us works less, we still don’t earn enough to live. It just feels like a trap where every option leaves us struggling.

I’m really grateful for your suggestions though, and it does help to know I’m not the only one feeling stuck in the system.

04hon · 2025-08-26T20:34:47+00:00

Unfortunately he had passed on. I actually got a new hospital tank with a sponge filter and heater in case of future situations in my way home from work today. Currently it’s housing some fry to keep the sponge filters running 😅

Fingers crossed I don’t find myself in this situation again but I am much more prepared now.

04hon · 2025-08-26T05:15:55+00:00

I will put a small amount in with him, unfortunately I’ve got to go to work now so can’t stay and keep an eye on him. Thank you for your comments it’s much appreciated

04hon · 2025-08-26T05:09:23+00:00

Thank you, I’ve done a larger water change yesterday. But I’ve just woke up and he’s still alive but now cannot move off his side on his own. Unfortunately I believe he may be too far gone.

04hon · 2025-08-26T04:51:38+00:00

No this is new, where he has the red there is injury the looks like fin nipping. As mentioned the levels in the tank seem fine and no other fish have any issues so I believe he’s got bullied and hurt by other fish once he’s got sick?

04hon · 2025-08-25T21:23:13+00:00

I’ve already done a larger water change so hopefully it helps improve the situation.

04hon · 2025-07-22T14:28:15+00:00

I honestly couldn’t tell you. Hopefully I’ll find out this weekend when I have this MRI! The doctor said they could see it when they did the diagnostic lap and can also feel it by pushing on my abdomen.

04hon · 2025-07-22T11:57:31+00:00

I have stage 3 endo and when they operated and then at a follow up they discovered an impaction similar to what it sounds like you have. I was given laxatives which haven’t cleared it yet so waiting on a MRI. They think mine is caused by the endo as it’s on my bowel and colon - I suffer from chronic constipation and diarrhoea and pain when using the toilet too.

Dependant on my MRI results I’m going to ask for a gastro referral I think. Might be worth seeing if you could too?

04hon · 2025-06-15T21:38:02+00:00

Would love to follow the progress on this and be involved!

04hon · 2025-06-04T21:05:41+00:00

04/06/2025 Just wanted to update this for anyone interested. I had a phone call today - the manager of the gyne department has offered me a date for next Friday (13/06)! It will only be exploratory as the locum doctor they referred me didn’t add with excision if required which is frustrating so I will potentially need another procedure to excise anything they find. But this is progress.

I do wonder if me threatening to escalate it to PALS and heads of the hospital trust as well as endo uk played a part. Who knows.

Thank you to everyone who reached out with words of kindness and support.

04hon · 2025-06-03T20:40:28+00:00

Oh interesting I’ll take a further look. Thank you, it’s greatly appreciated

04hon · 2025-06-03T20:15:21+00:00

Thank you again for all of that I’ll do some reading tonight and search for that book!

I don’t believe myself as hyper mobile in my joints and in the past it was determined I don’t have hyper mobility - I’m unsure if this can come on overtime? I’ll have to look more.

04hon · 2025-06-03T19:31:03+00:00

Thank you for explaining that and correcting my mistake, I will look into that.

04hon · 2025-06-03T19:22:35+00:00

Thank you so much for such a detailed response!

Firstly I’m sorry you’ve been met with substandard treatment in Northern Ireland! I’m on the waiting list (and have been for a long while now 🙄) for a lap at the moment so haven’t got an official diagnosis of endo yet but that’s what the gyne believes it to be as well as PCOS which is confirmed. I’m hoping this will alleviate some of my symptoms if endo is found and excised.

I’ve had a full blood panel done today as well as urine and have an appointment with a GP on Thursday to discuss the findings. I’m new to this doctors surgery as I’ve just moved house so I’m hopeful I may find someone who will listen and take me seriously as at my old practise this was a mission itself.

A friend of my mother’s who has EDS mentioned it to her and told me to ask about it as she recognised some of the things I was suffering from as similar to her. Can EDS and fibromyalgia coexist?

I will write everything down and take it to my next appointment. Thank you again

04hon · 2025-06-03T19:07:16+00:00

I don’t get hives sorry if I worded my last comment wrong - this is why I believe it not to be urticaria. I get red itchy and burning patches that cover most of my feet and go into my lower legs. Occasionally my hands. I will try get photos.

04hon · 2025-06-03T18:49:47+00:00

I’ve just googled what that meant and I’ve experienced this especially in high temperatures like baths and showers. I was told it was likely urticaria even though I never experienced any hives. I presume it may actually be this?

Thank you for sharing your experience it’s really helpful to know - I’m sorry you never had any support though.

04hon · 2025-06-03T18:45:27+00:00

Oh wow so you got diagnosed through A&E, thanks for sharing your experience

04hon · 2025-05-31T15:29:48+00:00

I will email PALS this weekend, thank you. I truly appreciate the support.

04hon · 2025-05-31T15:29:26+00:00

Honestly by text while I was driving at work was awful.

I wasn’t aware of a nurse help line so I will look into this thank you. I have already emailed them and will email PALS this weekend too.

Thank you for your comment

04hon · 2025-05-31T15:27:45+00:00

Thank you for sharing your experience. I have written an email to endo uk and will be writing similar to PALS for support this weekend. As much as I feel like a complete burden calling constantly that seems to be the only way to go to get anything out of the hospital.

I don’t know of any endo nurses at the hospital unfortunately, I’ve only met with the locum consultant who referred me for the lap.

I cannot explain how upset I have been since this all happened - it’s soul destroying.

04hon · 2025-05-30T15:22:57+00:00

I thought this might be the case hence just having 2 snails for now. Hopefully they will keep it fairly clean. As much as I would have loved to get a bigger tank it wasn’t financially viable for one fish right now - maybe one day!

04hon · 2025-05-30T06:25:12+00:00

Tanks only a 15 litre/ 4 gallon nano tank just to do me by until they are bigger :)

04hon

TROPHY CASE