Heavy Clots / Miscarriage? Endo? Cyst?

[tjohnson95]

hello everyone,

I was diagnosed with Severe Endometriosis back in 2017 via surgery.

Post surgery my pain was less, period bleeding was less and I only had 3/4 break from my pill a year, mostly taking it back to back and stopping to ‘check in’ on my bleeding.

Last November I didn’t have a bleed at all and my GP put this down to “women’s bodies are weird” despite having endo diagnosis.

In April I took another break from the pill and I have NEVER had so much blood - I flooded for the first time on Friday night after passing 4/5 big clots (50p piece sized, dry-ish, fibrous/stringy). I called 111 and was told to go to the urgent care clinic.

I was prescribed some Tranexemic Acid tablets to stop the bleeding but it returned a day later with clots again.

Went back to A&E last night after feeling weak/shaky/faint/clammy and I’m being referred to the Endo Clinic in Derby.

I’ve done 3 pregnancy tests over the weekend and I’m negative but doctors can’t say whether I’ve had a chocolate cyst burst or an early doors miscarriage.

Has anybody had similar clots/experience?

I’m so exhausted trying to self advocate over and over again and getting nowhere. Sometimes I feel having this diagnosis is more of a hindrance than a help!

Id love to know if anybody else has had these types of clot before and if they got any answers?

[Booty42]

Oh no how awful. I have no advice I'm afraid, the only time I had a similar situation with the terrible clots and flooding etc was when my body rejected the coil 3 times in a row, that was a really bad time. It's great to hear you have been referred to endo clinic.

Do you knowingly have a endo cyst or is it just what they suspect it may have been? I have a 6cm endometrioma choc cyst and frankly really scared it may burst.

I have my initial gynae app in 9 days and will be pushing for endo specialist surgery but I think I have a bit of a battle to get there but we will see.

Hope all works out well for you and the wait for endo clinic isnt too long.

[tjohnson95 in reply to Booty42]

hello

Yeah I had my lap surgery back in 2017 (when I was 21). They found several chocolate cysts but said they were too small to worry about.

I suspect I also have Adenomyosis because scans have always shown that I have a “bumpy looking uterus” which the male ultrasound practitioner didn’t think anything of he just said it looked “odd” which is always reassuring…

Push for surgery as it definitely improved my life these last 6 years. None of my endo showed up on scans, ultrasound or MRI so really do push for the surgery as much as you can - sometimes it’s the only way for doctors to get a view on what’s actually happening!!

[Booty42 in reply to tjohnson95]

HiThanks for your reply.

I will be having surgery as I have an infiltrated uterus, a 6cm endometrioma on my ovary that contains a solid mass and some calcification and my CA125 is now 141. Both my USS have shown endometriosis.

I think the battle will be getting an endo specialist for surgery as I was referred on a 2ww following findings, to a general gynae.

Hopefully the general gynae might specialise in endo (but I doubt it as the hospital I've been referred to is not a BSGE), if they are not hopefully they will refer me on appropriately fingers crossed

[SavageGold]

Hi there I don't have a definite answer for you but I had the same happen to me June/ July 2021. I'd missed my Depo by a few weeks in the spring when I was attacked. I was convinced it was an early miscarriage. The nurse and Drs were adamant I'd not been pregnant but gave me no alternative answer. It's taken me a year to recover. The clots settled down quickly. The bleeding/ liquid and the smell and pain took a year to die down. I'm having an mri on Wednesday to check for endometriosis. I'm paying private.

I hope you're OK.

[tjohnson95 in reply to SavageGold]

hey!

Thanks for your reply and I’m sorry you’re suffering too.

Same here, Doctors couldn’t seem to tell me if it was an early doors miscarriage or a burst choc cyst or an endo attack when I directly asked them over the weekend, different doctors each time.

I’ve had bloods taken and all my vitals are fine bar low calcium which apparently can either be a sign of cancer (hope not) or people with endo have low Vitamin D and vitamin D controls levels of calcium within the blood so I’m going to broach that with my GP today whilst they sort my referral.

Goodluck with your appointment! Scans showed nothing on me - I was diagnosed as severe through lap surgery so keep pushing!