Passing multiple large clots

[Avyb73]

hi I’m 51 and was diagnosed with endometriosis 2 years ago, I actually thought I was going through menopause as my periods had stopped for several months but then all of a sudden I was bleeding very heavily and my gp referred me to gynaecologist, after tests scans, internals etc I was told I had endometriosis and had probably had it a few years and that the best option for me was the mirena coil, if that didn’t work a hysterectomy would be needed, it took a few months after getting the coil inserted but my bleeding did reduce drastically, but over the last couple of months I have started to pass clots that are the size of the palm of my hand and as thick as my pinky finger, there’s between 5/10 of them at a time, straight after I feel really strange like hollow inside with lots of fluttery feelings but with a pounding headache, my dr just said she would refer my back to gynaecologist but where I live I have heard this can be anything up to 70 weeks ! I’m scared to go out incase it happens outdoors as luckily enough I have always been at home so far, just wondering if this was normal ? As I have had other tests done and there is nothing else going on so I am assuming it’s connected to the endometriosis?

[635703]

hello 👋🏻 I’m sad this is so scary and lonely. This isn’t normal and it may or not be common.

Clots, for me were the size of 2 grapes. Sadly I can’t help more.

I sometimes have to wear Always Discreet pull up adult nappies or incontinence pants. (I have another 2 separate chronic illnesses besides Endo).

These aids help me to go out more confidently. Incontinence pants can help, they come in black, white and nude. I can wear them under dresses. £3.99 in my Aldi here too.

All the best 💛💪🏻

[girli1111]

That bleeding is not normal. I had abnormal bleeding (and stage 4 deep infiltrating endometriosis) and while occasionally I passed large clots it would not be multiple clots of the size you describe. You say other tests are ok but I’m amazed that you’re not anaemic. I think you should see GP again and ask for an urgent referral for abnormal uterine bleeding. It’s not ok for them to expect you to put up with such debilitating symptoms. Best of luck.

[AllthatGlitters]

hello sorry you are now part of this club!

I have endometriosis and adenomyosis and I pass large clots and flood through my pants and jeans with a pad on. It’s happened when out and I am soaked in blood. It’s so upsetting.

I now have a disability key which allows me to enter the disabled toilets when i have an urgency to get to a bathroom. I also have a card I put in my purse which says medical emergency along with my condition. You get them on Etsy, this allows me to show it when out if I ever need help.

I have had 2 endometrial ablation where they take away the lining of the uterus to stop the heavy bleeding, this has worked for me but still heavy bleeding at times but no way as bad as before. Have a look at the novasure ablation online.

You could also ask for tranexamic acid and northisterone medications to take together, I am on them when things get bad.

I hope the above helps, feel free to ask me anything xx

[Sunset-lady]

I have this which is why I'm on zoladex. I have stage 4 endometriosis and fibroids and adenomyosis (they often all go together according to my consultant). The bleeding can be traumatic so I totally understand. I've had to run out of restaurants because I've suddenly flooded. This is most likely down to fibroids embedded in the cervix - so everything sheds. The coil usually helps (the coil won't sit in my cervix). The advice on here is correct. You need to push for another ultrasound or MRI to check you for fibroids and adenomyosis. You may need a biopsy if the lining is thick. Be pushy or they'll just leas you to bleed and you'll end up anaemic which I was for 18months. The problem then is you haven't the energy to push! I'm on zoladex now which has worked to some extent. Good luck x

[Bakewey]

I have taken myself to A&E when I’ve had days like you describe. Unfortunately, I can not be fitted with a coil so we are in the same boat. I was prescribed tranexamic acid along with another acid and sent on my way.

I’m waiting to see my my endo consultant about passing clots like you describe - I’m currently on holiday and had 6 days of it - in the end I stayed in my room for 2 days as I literally could not stand up without flooding!

I have no real advice for you, but I wanted to let you know that just before coming away, I had a pre-op appointment and showed my clot to the medical team; they said it is not life threatening (though I know when you have a constant stream it fella like it)! I also showed a similar image to the A&E gyno team and they said the same, do not worry, take the tables and eat iron.

I’m going to try and DM you a pic so you can compare.

Please, take care and let me know if you get any answers as to why this is happening to you.