u/Quiet_surprise79

I've just learned that both endo and PCOS can raise platelet levels.

Tldr; suspect I have one of these but hasn't been diagnosed over 1.5 years with pelvic scans or gynae. I think it has been a driver in my platelet levels. How do you manage PCOS or Endo without the combined pill, or is there a way to convince haematology to let you take it? Progesterone-only makes symptoms worse.

So here's my (35f) story. 3ish years ago, I came off the contraceptive pill. I had a few crazy hormonal symptoms but I also kept getting migraines. I went to the GP, they found my platelets were raised but still below the 450 threshold so I wasn't diagnosed with anything. Eventually, the migraines passed.

Fast forward to last year and out of nowhere, I had a whole bunch of hormonal symptoms again, but worse. I also had another round of migraines. I thought I was in early peri (33yo when this began but my mum apparently went through it early), had blood tests, platelets were higher. I had the genetic testing and was found to be JAK2+ which lead to being put under the care of haematology. I had pelvic scans and a gynae visit but nothing was diagnosed. I begged to try HRT but as no one could diagnose or rule out peri, I wasn't given it. Given the ET diagnoses, I could no longer take the combined contraception pill. Eventually I was put on the mini pill, but this made symptoms such as spots and inability to sleep much worse, so after a month I came back off.

In January of this year, I had acute pelvic pain and bleeding for over two weeks. I had more pelvic scans and blood tests and was put on progesterone again to help. It did help, but no one found a cause again.

It's been nearly a year and a half since the hormone issues got bad and while they eased off a little, everything has changed a lot. Hair, skin, elasticity, sleep quality, mood especially has been hit real bad and I already struggle with CPTSD. My hair is very thin in some places and my body hair is so much more than it was a year and a half ago. My physical appearance went from looking my age or maybe a little younger, to looking like a wrung-out person at least a decade older than I am.

So I put myself on the combined contraceptive pill, because I was sick of it all and my mental state continued to decline rapidly. I do not recommend this to anyone, it is against haemo advice but weighing up my quality of life Vs the risk (as a low-risk patient to begin with), it was a choice I made fully informed. I also checked out which pills has the lowest clot risk profile. A couple of weeks later, I had blood tests in part because I mentioned hair loss and fatigue to my MPN nurse, and she found my ferritin was at 11, but my platelets were the lowest they've been since the first blood tests I had at the start of last year. Low iron sometimes causes an increase in platelets so this was a shock. Now I'm wondering if it's because I do, in fact, have undiagnosed PCOS or Endo, and that has been the main driver behind my high platelets this whole time?

I still have the gene mutation, so I'm aware ET is still very much on the cards. I also know it's somewhat normal for platelets to fluctuate, but they had solidly been in the 500-600 range through every blood test once had since January last year. If low iron can push them up, it seems particularly odd that they would r lower this time. I am getting more bloods in a couple of weeks to check how I'm getting on with iron supplements.

I have felt a lot better since being back on the combi pill. My skin is recovering, my body shape is becoming more "normal" as is my face shape. I look a bit brighter again, I'm sleeping better and the intense mental spin-outs are getting further apart. Things are calmer and life is a little easier. I recognise myself in the mirror. I know that progesterone-only doesn't work for me, and because everything internal has been ultra sensitive since the pain in Jan, the idea of IUD terrifies me. I like the pill. I'm happy with the pill. But my haematologist already said no to it previously. How do women with MPNs and endo or PCOS actually manage it?

Alright this is an odd one but I get this feeling with animals a lot (huge animal lover, very much interested in welfare) and have just realised I get it with inanimate objects as well, in certain circumstances. More often with a cute thing, but it could be other things too.

I'll add here that I'm not spiritual at all, I don't believe anything is "meant to be" or anything like that, BUT that said...

Does anyone else here feel an intense attachment to certain things from first sight for no obvious reason?

I got my first rabbit because I saw him and felt whatever this feeling is, as I was looking into getting a rabbit. My bf at the time convinced me to leave him because I wasn't prepared and didn't have all the stuff, so we left, but I cried on the way home and begged him to go back. So we did, and I got all the stuff, and this rabbit. I saw lots of cute rabbits while I was looking. He didn't really stand out in terms of colour or anything, I just knew he was the right rabbit for me (he absolutely was! Not that there was a wrong option). He's over 9 years old now.

There's a specific soft toy I want right now. It's a popular brand but one I've not had any interest in, until I saw *this* toy, and now I'm desperate for it to come back in stock and I just know that if I can't get it, I'm going to think about it forever. It's like I can't imagine my life without this thing in it, even though I don't actually lose anything by not getting this toy.

It can be things like clothes as well. Mugs. *Pens*.

Does anyone else get this? I have no idea if it's related to autism or not, but I don't remember hearing other people talk about this so I thought I would ask!

ETA: not getting the thing results in genuine deep sadness, like leaving a friend behind, and a feeling that something is out of place?

This feels like something I should be able to easily Google but Google is becoming surprisingly unhelpful.

If I were to create a project that encased LED lights to make a cute hanging, such as leaves in a bunting format, which yarn material is best? My gut says cotton because it can be used as hot pads etc, but I am also aware that it's flammable.

If anyone has made such a project, what did you use? Are LED lights even the most appropriate lighting?

Than you!

No details but it was nothing too bad, but I have not self harmed for around 13 years. I was addicted to it when I was a teenager, but eventually managed to stop.

Since then, I get ideation type thoughts when I'm really stressed or fully triggered (CPTSD), but I've never gone through with anything.

Recently, someone let me down in an excruciatingly painful way. It goes so deep that I can't possibly describe the full extent of the situation here. It was not a malicious act but the realisation that things can never be what they were again, the realisation that this person isn't who I thought they were, that I'm losing the closest friend I ever had and also having to push down parts of me that felt unseen until this friendship bought stuff to the surface, it all triggered me big time.

I think I've always emotionally held a little bit of myself back from people in self-protection. That fell away with this person, and this demonstrates why I needed to keep those boundaries I guess. A switch flipped in my brain and I did it. I self harmed, and it felt like reclaiming a bit of myself that they don't have access to, honestly.

They had access to the most vulnerable parts of me, but they don't know this part. They won't know this part.

I don't know if I'll do it again. I don't know how to handle this situation at all, to be honest. I want to delete the entire friendship from my memory so that none of this is so painful, and I can be blissfully ignorant of how amazing it felt to fully trust someone enough to be *that* vulnerable with them. I'm just so totally lost.

*Not diagnosed but strongly suspect I have autism.

One of the battles I've been having recently is hair washing. This never used to be an issue, I'd wash my hair every other day unless I was in a depressive episode, but I *hate* my current shower and I am incredibly sensitive to touch input right now, so have been avoiding showers.

I don't like washing my hair in the bath because unfortunately, I'm losing a lot of hair right now and I try to catch it all but it ends up floating in the bath and feels gross when it ends up on my legs or arms etc. I'll force myself to do it if it's been 3 or 4 days and I just need to get it clean.

Recently, I just haven't wanted to wash my hair. I've forced myself to do it every 2-4 days because I also won't go outside when my hair looks gross. I sometimes use dry shampoo but it makes my head a little itchy so I try and avoid that too.

I am geared up to wash my hair today as it's been two days. But I've had my hair in plaits and it actually still smells and feels very clean, apart from the bits that are too short for plaits at the front, which look greasy. And now I'm in this decision paralysis where I can't decide whether to wash it or not.

It's been an hour and I haven't moved because I can't make this silly little decision.

Does anyone else get stuck like this? If my hair didn't smell good, I'd be washing it. It's literally because it mostly smells and feels clean that I'm stuck. Well, that and not wanting to be in the shower to begin with.

Hi all, 35f.

My most recent blood tests have shown that my platelets have reduced from a steady 550ish to just over 450. This is surprising because they've been 550 or higher since diagnoses (April or may last year). I believe it is partly down to a reduction of stress, but that's another thing.

However, my ferritin is at 11. I have been feeling an increase in fatigue and exhaustion, especially in the afternoons. I am freezing all the time and my afternoons have essentially been curling up with a hot water bottle and a quilt, despite spring slowly arriving. Having had a deeper look, I had a whole bunch of symptoms of low iron that I didn't realise were symptoms.

My MPN nurse will ask my GP to prescribe iron and has requested for blood tests in two weeks to make sure everything else stays normal.

I have been having trouble with my periods and suspect this has impacted iron a bit, but things haven't been *that* bad. Is it normal for ferritin to drop with us? My MPN nurse explained a bunch of stuff that my haematologist didn't yesterday, but I didn't quite take it all in and don't understand the connection between iron and MPNs (I've seen others post things before so I assume there is a connection!).

Thanks all.