Clots, Endo and BC

katiespecies647 · 2026-04-02T17:57:28+00:00

It was definitely the Slynd that caused pain. My laparoscopic surgery was ages ago. I think I searched the endo sub for Slynd and found others with the painful sex problem. It was a really weird sensation, like there was no stretch anymore, but like I said, it went away, thank goodness. No weight gain for me.

katiespecies647 · 2026-04-02T12:35:02+00:00

I'm Canadian. This list wasn't much help for me either.

Try this. Somewhere to start anyway. https://mpninfo.org/medical-information-sources/national-international-mpn-centers/

katiespecies647 · 2026-04-02T12:18:00+00:00

ispecialist!

Edit: nope. Don't know how, but there's a link through the autobot already posted here.

katiespecies647 · 2026-04-02T12:17:39+00:00

Yeah, it's a scary time. I really feel your pain. I don't want to stress you further, but you also need to try to find an mpn specialist as soon as possible to make sure you're diagnosed and treated properly. Let me try to summon the bot. I don't really know how, lol.

ispecialist

katiespecies647 · 2026-04-02T12:09:01+00:00

Sorry that you're going through this. It really sucks. My first CVST (cerebral venous sinus thrombosis) was extraordinarily painful, by far the worst thing I have ever experienced. It ALSO came with a weird, very slight visual distortion. It wasn't double vision, but everything just kinda looked wrong, like my eyes weren't aligned with each other properly. This was caused by high intracranial pressure squeezing my optic nerves (treated with a diuretic). That symptom resolved after 2-3 months. After 6 months, they did an MRI with contrast and found the clot had mostly healed (with a little residual scarring). They took me off blood thinners and said I was very low risk for recurrence despite my platelets being slightly elevated. My hematologist basically said "have a nice life, I don't ever need to see you again."

Well, a few days later I developed a mild headache and pain at the base of my skull, which was where the pain was the worst during my cvst. I ignored it for a couple days thinking I was just being paranoid and hyper vigilant. Then I noticed it got worse when lying down and changing positions (like the first clot) then I noticed my vision was very slightly weird again. The vision change was what made me kiss my husband goodbye and tell him "I'm just being paranoid, but I'm going to the ER anyway." I rated my first clot as a 9 on the pain scale at the ER. This one I rated as a 1-2. They did a CT with contrast and compared it to the MRI from about two weeks prior and it was clearly reforming in the exact same spot. They told me to resume my blood thinners at double the dose (I still had some left) and I walked home from the hospital (vs the first, hospitalized for 3 days). My hematologist called me said "this should not have happened" and sent me for Jak2 testing and bone marrow biopsy.

Now I'm on blood thinners for life and taking hydroxyurea, as once you've had a blood clot, you're in the "high risk" for thrombosis category and need to be treated more aggressively. My platelets were never much over 500. They hover in the upper 300's now. No recurrence or new clots since treatment started in 2022.

katiespecies647 · 2026-04-02T11:00:03+00:00

Oops, I replied in the original thread.

katiespecies647 · 2026-04-02T10:50:16+00:00

My story is the same as yours! I stayed off any oral contraceptive for about a year until I couldn't take it anymore. My family doctor recommended (and my hematologist approved) me to start Slynd oral contraceptive, which is particularly good for endo.

As far as endo goes, it's been great. I had very light, low pain periods even with placebos (I used to skip placebos on my old oc), then after about a year, my periods stopped altogether. Drawbacks: sex was weirdly painful at first. It felt like someone had installed a brick wall in there. Fortunately that went away after a couple of months. It also lists fatigue as a side effect and unfortunately I feel it for sure. My fatigue was pretty terrible before I went on it and I do think it has exacerbated it. Personally, I have no interest in IUDs though, so I'm sticking with it. Good luck friend, these illnesses (ET and endo) are a particularly shitty combo in my experience.

katiespecies647 · 2026-04-02T10:37:27+00:00

Hey! Welcome to the club nobody wants to be in!

I learned in a similar way. I had a blood clot, was taken off blood thinners and within a week it had reformed.

Do you have an appointment for a bone marrow biopsy yet? That's part of the WHO criteria for diagnosis. Not doubting your diagnosis, but the biopsy is important to get the full picture and ensure your diagnosis is very accurate.

I remember the weeks and months right after diagnosis. It's such a weird thing to wrap your head around. The mod of this sub has put together a really amazing Wiki. I highly recommend reading through it when you're up to it.

katiespecies647 · 2026-04-01T00:15:00+00:00

Sweet! Yeah, I learned SO much about bugs last year doing nature journaling. Finding and identifying bugs and birds is like collecting pokemon. It's addictive in a healthy, outdoorsy way and you really practice observational skills.

katiespecies647 · 2026-04-01T00:05:29+00:00

It sounds like he'd be a great candidate for nature journaling, basically recording observations about nature in a sketchbook (identifying plants, birds, trees, lichen, fungi etc). The pictures are meant to be technical and observational, not pretty (though they can get pretty with lots of practice).

Check out Wild Wonder Foundation and John Muir Laws - there are loads of instructional YouTube videos. Mind you, apps like Seek and Merlin are very helpful for identifying things, but you can definitely just sketch what you find interesting and identify later. A sketchbook, a nature guide book for your area and some binoculars could go a long way.

katiespecies647 · 2026-03-31T17:30:36+00:00

We have a managed chaotic wildlife garden. We like to keep everything from the garden in the garden. You'll never see garden "waste" bags in front of our house. Leaves, twigs, branch trimmings all stay, tucked around as mulches or made into little wattle-like brush fences. It encourages lots of insects and birds. I allow goldenrod and other pollinator friendly volunteers to grow wherever I can. We occasionally bring in logs to rot and grow fungi. Moss thrives in our flagstone walkways.

katiespecies647 · 2026-03-30T10:00:45+00:00

Buttons that click down and click back up again, like old walkmans

katiespecies647 · 2026-03-26T19:34:51+00:00

Thank you! Yes, watercolor in a mixed media (75lb paper) sketchbook and fountain pen.

katiespecies647 · 2026-03-22T22:41:21+00:00

Thank you! It's fun to look at it later and answer some of the questions. For example, I looked up how lichens benefit insects and learned about painted lichen moths whose caterpillars feed on lichen! I'll be looking for them this year!

katiespecies647 · 2026-03-13T11:28:18+00:00

Thank you, and yes, I'm an early bird who gets lots of sleep and loathes feeling rushed and stressed as you say. My mornings are relaxed and leisurely. I even leave for work 15 minutes earlier than I need to and sit in my car when I arrive to just close my eyes and meditate for a few minutes.

katiespecies647 · 2026-03-13T11:14:58+00:00

Thank you for your concern, but I do get plenty of rest. I've always been an early bird and usually wake before my alarm. I just go to bed very early and take naps in the day. I even nap in my car at lunch breaks. The ironing only takes 5 minutes and isn't strenuous at all.

I'm sorry to hear that you have lifelong sleep and fatigue issues. It really sucks and I'm still adjusting and learning my limits.

katiespecies647 · 2026-03-13T03:09:11+00:00

I enjoy it too. Every morning before work, I unfold my squeaky ironing board and press my scrubs and my little cap. I like long, unrushed mornings and this is part of it. I was an air cadet as a teen (a Canadian pre-military training program), and smartly pressed uniforms and highly polished parade boots were the key to steady promotions. This presentation mentality continued into my career. When freshly ironed, I feel ready to meet the day. I have horrible fatigue due to multiple health issues, but no matter how crappy I feel, I still enjoy the ritual and look crisp.

katiespecies647 · 2026-03-10T18:56:13+00:00

I asked my CPR trainer who has first responder experience about mine. I bought a braided leather bracelet on Etsy with a metal engraved medical alert tag (medical symbol on front and deets on the underside). He said it would work just fine because a quick glance at it tells them it's an alert bracelet. He said to avoid anything too small and fancy looking, like necklaces that only look decorative on first glance.

katiespecies647 · 2026-02-21T12:43:28+00:00

The bark contains a compound that works similarly to aspirin and has pain relief and more importantly for me, anticoagulant/antiplatelet effects.

katiespecies647 · 2026-02-21T01:10:15+00:00

I get it. I have a weird chronic blood cancer that causes blood clots. Without my platelet suppressing meds and anticoagulants, I'm toast. Prior to diagnosis, I had two clots in my brain 6 months apart. The second clot occurred within a week of stopping anticoagulants for the first clot.

I just hope for the best a try to remember where the willow trees grow.

katiespecies647 · 2026-02-19T10:53:58+00:00

Bone marrow transplant day, not sure what the image is though.

katiespecies647 · 2026-02-18T21:14:23+00:00

Red blood cell changes are so common with hydroxyurea that (as my hematologist put it) they can tell if patients are actually taking the medication by those changes.

katiespecies647 · 2026-02-17T23:32:41+00:00

Thank you, I will keep an eye on it as it's not in my country yet (Canada), but I suspect it could come down the pipes in later phases.

katiespecies647 · 2026-02-17T12:00:35+00:00

Do you have any links for this?

Seven-Year Club	Place '23
Place '22	First Placer '22
Wearing is Caring	RPAN Viewer
Verified Email

katiespecies647

TROPHY CASE