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 💛💪🏻

[Avyb73 in reply to 635703]

Thanks for your reply I think I will definitely try the pants as sanitary towels are less than unless when it’s bad ❤️

[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.

[Avyb73 in reply to girli1111]

Thanks for your reply I have contacted GP again and she’s sending me to get my bloods done as i haven’t stopped passing clots since the start of the week 😬

[girli1111 in reply to Avyb73]

that’s a start! If you’re left waiting too long and this continues I’d be prepared to present yourself to A&E if need be.

[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

[Avyb73 in reply to AllthatGlitters]

Thanks for your reply, I have contacted my GP again and she is sending me to get my bloods done and has prescribed my tranexamic acid, the last time I saw a gynaecologist she said if the mirena coil wasn’t working and the endometriosis was getting worse I would know because I would be in debilitating pain, but because I’m not I think there attitude is well everything must be ok ! Not saying they are all like that but defo the vibe I’m getting but they defo never said anything about passing massive multiple clots 😬

[AllthatGlitters in reply to Avyb73]

It took me a while to find a good GP, it shouldn’t be that way, hope you get to speak to a healthcare professional who listens x

[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

[Avyb73 in reply to Sunset-lady]

Thanks for your reply, my GP did ask when was the last time I had an ultrasound but not sure if she has put me down to get one or not ! But I have contacted her again and she has prescribed tranexamic acid and is sending me to get bloods done so fingers crossed il get some answers 😬

[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.

[Avyb73 in reply to Bakewey]

Thanks for your reply, my partner said that to me you should just take yourself to a&e as you can’t wait for what could possibly be a 70 week wait cause clots that size are not normal no matter what your GP says you can’t carry on losing that amount of blood especially when you don’t know where it is coming from and if I hear my GP say to me well your a woman of a certain age one more time I think I will scream 🫣😂 I’m currently on day 5 with constant bleeding and clots surprised I’ve anything left to give 😬

[Sunset-lady]

I bled for weeks and it's just a merry go round of tranexamic acid, iron infusions and then zoladex. It's the PTSD afterwards as you live in constant fear you're going to hemorrhage x

[Avyb73 in reply to Sunset-lady]

Thanks for your reply , exactly I’m amazed I’ve any blood left to give 🙄 it’s the not knowing where exactly it’s coming from plus it’s a very dark red colour which is not my norm 😬

[Bakewey]

I agree with him, unfortunately it is the squeaky cog that gets seen! Good luck - I hope you get some answers soon.