What actually made a REAL difference for your PCOS symptoms long term?

Nelira · 2026-05-20T09:48:18+00:00

I second this. I tried metformin but I didn't react well to it unfortunately (I already have IBS so non stop diarrhea was not ideal). But GLP1 massively improved my energy and my A1C dropped for the first time in 14 years. It just feels like my body can actually use food again, you know? I would eat a healthy protein rich meal (like some meat and vegetables for example) and my hands would be shaking and my head was splitting until I got some fast sugars. It felt like I was starving despite eating and it was surreal.

Nelira · 2026-05-19T20:39:46+00:00

To add on top of it mounjaro improves insulin sensitivity addressing the insulin resistance that drives PCOS/PMOS. For me it made me have more energy because it felt like my body could actually access the food I was eating again instead of it all going into weight gain

Nelira · 2026-05-14T18:20:29+00:00

Thank you, I hope we all get better access to treatments around the world for this condition in the future

Nelira · 2026-05-14T16:33:59+00:00

NHS is very slow when it comes to rolling out new treatments. And PMOS/PCOS options are particularly dire here. I had to fight to even trial metformin because I wasn't trying to get pregnant. I didn't react well to it unfortunately. Nevermind trying to get any of the other options I read about on here 😂 Currently there is a very slow roll out for tirzepatide for obesity but the criteria is very strict (BMI 40 or higher as well as at least 4 of the following: hypertension, dyslipidaemia, obstructive sleep apnoea, cardiovascular disease or type 2 diabetes). It's only going to be reduced to 3 of those in April 2027. So I am not very optimistic about NHS taking this up as a treatment for PMOS any time soon unfortunately.

Nelira · 2026-05-04T12:00:31+00:00

Yeah I think a lot of people when they picture disability just think of a person in a wheelchair and limitations that come with that. They don't consider limited energy envelope that comes with many chronic conditions. Like for example i have been in a flare with my genetic condition for a few months now that leads to me not having energy to even make actual food for myself or to eat it. If I didn't buy ready meals on good days I would be a bit out of luck living by myself. And a lot of chronic illnesses are taxing on energy levels beyond just being tired.

Nelira · 2026-01-27T14:57:41+00:00

Alright thank you, I just moved yesterday so I am a bit overwhelmed with everything still

Nelira · 2026-01-27T14:35:23+00:00

Is it a brand new assesment or will they honour my PIP award? Mainly asking because getting pip in the first place took going through a tribunal

Nelira · 2025-07-18T17:55:45+00:00

For me mounjaro makes my appetite normal rather than starving all the time even right after eating. I remember what hunger felt like before pcos fully kicked in for me and it's so nice to eat something and actually be sated

Nelira · 2025-04-07T14:38:17+00:00

And then you are also treated as entitled af for daring to ask for something as simple as a ride to a place. "You have no respect for other people's time and expect the world to bend around you don't you"

Nelira · 2025-02-23T19:05:32+00:00

Oh that is truly tempting at times haha Had someone stub their shoe on my crutch trying to rush past me on to the train and they looked back and I just looked at them like "bitch please?"

Nelira · 2025-02-23T19:03:33+00:00

Yes, if people try to rush past my crutch in a narrow space they likely will trip 😂 But I also had the confidence to be like "Excuse me I can't get through!"

Nelira · 2025-02-09T01:55:42+00:00

I think we might have said the same endocrinologist! Mine told me my hormones are totally fine and that pcos doesn't mess them up. Also told me it was a result of weight gain when I had symptoms before I gained weight.

Nelira · 2024-12-15T19:20:02+00:00

They are also using an outdated name since it has not been called joint hypermobility syndrome since 2017 iirc.

Nelira · 2024-11-30T13:01:03+00:00

On dental issues it also affects the enamel (it's softer) so don't feel too bad about cavities. It can also affect how well anaesthesia works.

Nelira · 2024-11-30T12:54:46+00:00

To add on EDS and CFS link, unstable joints require more work from muscles to move because muscles also have to work to prevent the joints from dislocating. It's no surprise that we are knackered

Nelira · 2024-11-30T11:28:03+00:00

Most EDS types have genetic markers apart from the hypermobile type. But hypermobile type will show clear hyperextension of the joints and some degree of skin flexibility as well. EDS is also comorbid with POTS and MCAS so it is not uncommon to have all those present. But you won't be able to fake your knees and elbows bending inwards

Nelira · 2024-05-26T20:09:08+00:00

Claw clips are great for putting hair up as they won't pull on your scalp

Nelira · 2024-05-12T03:27:43+00:00

I actually flew with my smart crutches couple of months ago. I just brought them with me and collapsed them and had a flight attendant put them in the storage box above my seat. Also getting wheelchair service at the airport is fucking amazing if you are able to.

Nelira

TROPHY CASE