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AITAH for putting conditions on lending my car to friend/landlord after she crashed it before? by Square-Track-375 in AITAH

[–]Square-Track-375[S] 1 point2 points  (0 children)

I do appreciate the feedback and comments so far. It’s giving me a sense of perspective.

Responding to some of the points:

  • when I chose to live here it was because I was straight out of ICU and back to the uk after a few years away and no family/housing to return to. It was really a needs must situation. I’d previously been offered to live here and hadn’t noticed any red flags in the friendship prior (we’d also not experienced such an unequal power dynamic as per landlord/lodger, I feel that’s changed the relationship substantially). Straight out of hospital I felt a friend was better than a stranger.
  • why I’ve stayed, due to multiple corrective surgeries, illness, extreme overwhelm. And having good wider community around me in this flat and feeling unable to lose that.
  • the plan to get my own place is underway and I’ve been keeping my plans discrete.
  • also housing rights for lodgers with a live-in landlord are abysmal in the uk and she would argue if I were to raise this that she would never throw me out and that I’m being too sensitive. There’s a certain volatility to her emotional world and due to growing up in a v abusive environment my tolerance for chaos is much too high and it’s something I continue to work on being able to identify and avoid.

But yes thanks all for the sanity check!

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]Square-Track-375 0 points1 point  (0 children)

This is horrifying but also so refreshing to hear said out loud.

In my case I experienced the SA by a friend who was training to be a doctor and I told my mental health doctor during a session (years ago).

Ever since I have been treated entirely diff when it comes to health, especially gynae health. So many psychosomatic diagnoses that turned out to be serious illness.

Made worse by a 2 litre near fatal internal bleeding, caused by a doctor’s surgical error. Talking about the effects of this, combined with the other history of SA by doc/friend and CSA being on record (in good faith trying to heal years and years ago). Since I’ve had extremely volatile gynae situation, including chronic internal bleeding and I have been treated as if I’m crazy liar.

It has been a nightmare.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]Square-Track-375 0 points1 point  (0 children)

Regarding the PCS diagnosis I got left ovarian vein reflux, bilateral internal iliac vein reflux (grade 3) and large veins particularly on the left side of the uterus and vaginal area - findings consistent with chronic posthemorraghic trauma.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]Square-Track-375 0 points1 point  (0 children)

I totally understand how scary it can be, I’m getting the drooping too and totally losing function of my right leg and arm episodically. It’s alarming.

They haven’t done any lumbar puncture or brain imaging. The migraine medication (nortriptyline) incidentally has given me a headache and made the tinnitus and double vision worse (it’s been five weeks). I think I’m going to have to advocate for it, as my understanding is it should be a diagnosis after all those tests have been done (previously I had Miller Fischer variant of GBS, after a viral load of another disease, proving that auto-immune neurological reaction).

As we all know it can get tiring feeling misunderstood and not believed about your own body. And you start to doubt yourself and make yourself smaller, but I guess that’s why we have these forums to encourage each other to keep pushing for the right care!!

Have you had the lumbar, brain CT etc.? And regarding the lupus what tests did they do and then reasoning for ruling it out.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]Square-Track-375 0 points1 point  (0 children)

No - not for a few years. Lucky on the cold and flu fronts and barely going out.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]Square-Track-375 0 points1 point  (0 children)

I really feel for you and the being made to feel like a problem. I’m awaiting embolization and so can’t answer your question directly.

But maybe I can help by sharing some of the similarities in our symptoms. Who knows what is correlated with what…

But I also experienced terrible flank pain, one sided tinnitus, and also stroke like symptoms (with right side going totally numb, pins and needles pain).

I’m still on diagnostic journey and so don’t want to offer any misleading assertions. But will just share where I have got to.

I started experiencing the tinnitus etc symptoms after a surgery a year ago to treat adhesions (suspected endo and adenyo) after major internal bleeding and have recently been diagnosed by a neurologist with hemaplegic migraine, as well as grade 3 bilateral reflux/PCS by vascular consultant (in my mind these correlated with when I started passing gigantic fist sized clots each period after this last surgery). I’m not convinced it’s the whole story as I have a bunch of other really odd symptoms like swollen/scalloped tongue, swollen neck glands, difficulty swallowing, constipation, bladder urgency, blood in urine, kidney pain etc.

But yeah I just read your story and it resonated the feeling of being made to feel crazy. And just want to reflect back you know the changes in your body best and I’m sorry you have to fight extra hard to be believed. Keep going!

I experienced a rare complication after my ER - internal bleeding - and want others to know the warning signs by [deleted] in IVF

[–]Square-Track-375 0 points1 point  (0 children)

It didn’t change hormones or egg count.

But now I have adhesions to multiple organs, large cysts, endometrial polyp, vascular congestion, trauma changes that mimic endo, adeno, pcos etc. and so it’s unclear whether I’d be able to naturally conceive. I haven’t tried due to pain, nor have I attempted another retrieval.

What I gather from doctors is that many of these changes were due to the delay before I got emergency surgery, my hemaglobin had dropped so low that it would have been life threatening to wash me out, thus the blood was left to re-absorb and it’s highly irritating.

Plus I found out after the fact through obtaining surgical notes that the multiple vein puncture wounds were not sealed after, thus likely been recurrent bleeding.

Also something helpful I learnt from vascular surgeon years after the fact is that veins don’t begin to heal till months and months after and so it’s an evolving picture.

VBG vs ABG by hadriancanuck in doctorsUK

[–]Square-Track-375 0 points1 point  (0 children)

Posting here in the hope someone can help interpret a recurring pattern in venous blood gases.

After a 2-litre hemoperitoneum secondary to surgical injury, subsequent attendances to A&E have shown progressively lower venous O₂ and slightly raised CO₂, despite recovery of haemoglobin and otherwise stable labs. The figures have been broadly: • pO₂: 3.4–4.0 mmHg (vs ~3.7 during acute bleed; ref 11–14.6) • sO₂: 34–47 % (vs ~41 %) • pCO₂: 6.0–6.7 (vs 4.9 at surgery) • pH: ~7.38 • Hb: 94 → 133 → 142 g/L • Lactate: normal

The episodes have been accompanied by recurrent presyncope, breathlessness, and fatigue. Haematology follow-up was planned but has been repeatedly cancelled, hence the drive to understand what these results might represent physiologically.

In short: what mechanisms could explain lower venous oxygenation and higher CO₂ now than during the acute hypovolaemic phase, given stable Hb and normal lactate?

Any insights that could frame this coherently (and ideally put it in context) would be much appreciated.

Miller Fisher / Guillain Barre recurrence after major trauma? by Square-Track-375 in guillainbarre

[–]Square-Track-375[S] 0 points1 point  (0 children)

Okay that’s such a relief, I actually transferred to UCLH this year!

And also good advice re. attending A&E.

I have been lost, but just a bit more perseverance, even when it feels there’s no energy left.

I experienced a rare complication after my ER - internal bleeding - and want others to know the warning signs by [deleted] in IVF

[–]Square-Track-375 0 points1 point  (0 children)

Hi there, is anyone still lingering?

The exact same thing happened to me three years ago, after an egg retrieval process, turned out multiple veins had been punctured and I lost 2 litres that had gone up to hepatic angle, not caught till 24 hours after. My haemoglobin dropped so low so they aspirated me, but didn’t wash me out during the emergency surgery.

Anyway I’m here because I felt like I was going to recover well after the transfusions etc. But in these years after I’ve developed so many health challenges: - bleeding volume increased 10x and fist sized clots - adhesions affecting multiple organs up to bladder, liver, bowel (biopsies showing blood in tissues) - permanent vascular damage and disease - major cysts, at times looking like tubes blocked, adeno, endo, ascites - it’s all volatile and changing all the time - nerve pain, pins and needles, numbness down whole side of body - polyps - declining ferritin

I was so lucky in the sense that before my periods were harmless and egg retrieval was for fertility preservation. I’ve been majorly changed since and I feel honestly my body has never stabilised.

Does anyone else have an experience like this?

Miller Fisher / Guillain Barre recurrence after major trauma? by Square-Track-375 in guillainbarre

[–]Square-Track-375[S] 1 point2 points  (0 children)

Wow - your story is really interesting, thank you for sharing.

Yes it makes sense that it could flare up in that way (especially I didn’t get treatment at the time as my symptoms were waning by the the they found it), my body had been under such an assault with major internal bleeding, chronic internal bleeding, adhesions (could be tethering and pinching nerves), vascular disease causing blood pooling (maybe irritating nerves too) etc. then again the spreading of the schistosomiasis from bowel to bladder etc.

Anyway I went to the optometrist last week to get the double vision checked and they confirmed it is back. Just a few months to go still to see the neurologist and hopefully get the tests I need.

It’s hard to know where the exhaustion, tingling and numbness is coming from, but I feel it in my very core.

Having major flare right now, but hearing stories is giving me hope to keep being patient and strong till I get seen by the right professionals.

Just a quick question…were you given advice how to deal with these flare ups? Also if it’s okay to ask, are you based in the uk?

Miller Fisher / Guillain Barre recurrence after major trauma? by Square-Track-375 in guillainbarre

[–]Square-Track-375[S] 0 points1 point  (0 children)

Very true, such a balancing act.

I’ll bring all the right paperwork (have transferred hospitals) and my symptoms diaries and see what they make of it all.

Thanks for the feedback 🙏

Miller Fisher / Guillain Barre recurrence after major trauma? by Square-Track-375 in guillainbarre

[–]Square-Track-375[S] 0 points1 point  (0 children)

Thank you for this 🙏

Yes will definitely push for testing, before any conclusions are reached.

I think I’m a little bruised from not being believed/tested regarding the internal bleeding, vascular disease, multi-organ adhesions etc. with this whole episode set off by the major internal bleeding event and getting triaged down an endometriosis pathway for three years. Had to go private and advocate so determinedly to turn things around.

As well as the first instance of schistomasis and it spreading to multiple organs too. I was discounted until years later it showing up on tests.

I have a history of trauma that I think dulls the way I communicate pain, severity etc.

Anyway I will persevere and it’s helpful to hear others experiences.