Huge blood clots - PCOS?

[woodlandwonder17]

Does anybody with PCOS suffer from huge blood clots when bleeding? Mine are seriously large and it’s very unsettling. Some the size of golf balls!

I had a very large fibroid and certainly passed very large clots, beyond golf ball size at times and for a few years, resulting in severe anaemia. Please go get it checked and do not be fobbed off, I was!

Yes I did, my periods were so painful and mostly clots. I said to my gynaecologist it felt like early labour, she said it is because my cervix was dilating to pass the clots. I was offered the Mirena coil, then ablation and possibly a hysterectomy. The Mirena coil solved it for me.

I have been seen, biopsy was normal and offered an ablation but I don’t really want one :(

@YYURYYUCICYYUR4MEhow did they diagnose a fibroid? I’ve had an ultrasound and endometrial biopsy, they didn’t mention seeing any fibroids though.

I had ultrasounds, but said not seeing it, but it was probably fibroids, as my periods were exceptionally heavy and that I'd have to put up with it, and this was years ago now. I went to give blood and they picked up that I had a very low blood count, no wonder I felt so bad. No joy from NHS to do anything to check further and we wanted children, so I had to go private, ironically with the same female consultant I'd never actually seen although being under her on the NHS. It then turned out it was one large grapefruit sized fibroid, one that had junked the uterus, hence not seeing it, and it been pressing on my bowels.... hysterectomy was the outcome. Hence my telling anyone in this situation to get checked properly and not putting up with heavy periods. Female health is still pushed to one side and I am an advocate for ensuring we all shout till we get taken seriously.

@YYURYYUCICYYUR4MEgoodness me!!!!! If an ultrasound missed it, what did pick it up in the end? An MRI? I’m not sure I can afford to go private annoyingly.

Yes it can happen with PCOS. But I recommend going to your GP and push for a transvaginal ultrasound just to check it's not fibroids etc - if it wasn't recent when you had the last scan. When was the last time you had the ultrasound scan? If it was recent then ignore this because the ultrasounds you talked about would have caught fibroids. It's quite unusual for them to be junked - basically nearly all of them are caught by ultrasound. Have you had both a pelvic and transvaginal ultrasound?

Also since you had a biopsy, they definitely should have been able to feel it or something, if it was a fibroid. Was it keyhole? When was the biposy as well? Recent or notL

Other than that tranexamic acid can help with clots and heavy bleeding, you take it a few days before your period and during it as well. Or a mirena coil is a good long-term solution, it thins your uterus lining so, less bleeding and less stuff to come out, so less clots and cramps. Worth asking your GP about both tranexamic acid and the mirena coil if you think it would be a good option, or even to just go through the pros and cons with you. They can give adequate pain relief for insertion, if you tell them beforehand, Licodaine injection, numbing gel or spray etc.

Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot) and tranexamic acid (helps reduce heavy bleeding) - you need to start taking it days before your period starts so that it can work at best capacity.

Can you be more specific about your symptoms and what the investigations you had, have found so far? If you had a transvaginal and/or pelvic ultrasound normally it can pick up adenomyosis. You could have adenomyosis where the lining of the womb grows into the muscle of it, but is localised to the uterus only.

An ultrasound can normally pick it up as a provisional diagnosis for adenomyosis but an MRI can give a definite one (for a high majority of people). The biposy however didn't find anything so I doubt it's adenomyosis as normally the biposy can find it. However there are different types of adenomyosis: so focal adenomyosis and diffuse. So difuse tends to be little to medium pieces but all over the uterus inner muscle. But focal is medium to big chunks in balls at different areas again in the inner uterus muscle. So if you did have focal they may have biposed an area where there isn't adenomyosis tissue. Also as they biposy the lining of the uterus it can be difficult to tell about adenomyosis. If you detail your symptoms more I can see how they may match
https://www.nhs.uk/conditions/adenomyosis/
Link with more information.

@TheLivelyVipermy ultrasound was pretty recent but I had the coil in at this point (2 months ago) , no fibroids was noted in the report. The biopsy was done in January, and then they fitted the coil afterwards - but it recently came out of place. Since having it removed the awful bleeding has started.

I have been given tranexamic acid to try until I get another coil fitted which could be months :(

Ps. Was transvaginal ultrasound

Oh okay in that case I wouldn't be worried about fibroids or anything like that. I'm very sorry the coil came out. Why will you have to wait months for a mirena coil insertion? A sexual health clinic or GP can do it. Some advanced nurse practitioners can also do it. How much tranexamic acid are you on? I'd make sure you start taking it 3/4 days before your period and them during your period (depending on the instructions 2 or 3 days a day). Have you tried it yet? If you're bleeding whilst not on your period you can extend its use a little bit to those days.

Do you think naproxen or mefenamic acid would help you? Its more wirh cramps and pain, as its an anti-inflammatory. If you want to try it, ask your GP.

For pain relief for your miren insertion, I'd make sure you get Licodaine injection, numbing gel, take paracetamol and ibuprofen an hour before. I'd make sure you say you want all of this before the appointment, so it's ready as otherwise they may or may not have it, and it may be difficult to just get. Make sure its agreed beforehand and they say they'll have it all.

How else is your PCOS managed? What other treatments etc are you doing? What symptoms do you have as well?

I used to get this. I was told to take aspirin to thin the blood at that time of the month

@TheLivelyViperthank you for responding. Have to wait because I want all the pain relief for the insertion. It was agony the first time and I don’t want to go through that again :( so I have to wait for the hospital appointment which is a 20 week wait minimum or gum clinic was 4 months. Unfortunately doctors don’t offer the pain relief.

I’ve just picked up some Norethisterone as the acid wasn’t working so I’m hoping it starts to settle tonight. More golf sized clots came out today! Horrific!!!

i am on no medication for my pcos other than the coil previously.

I have multiple fibroids and tangerine/cricket ball sized clots daily. Tried a coil which fell out and tranexamic acid which worked briefly and then stopped working.

I found norethisterone very effective but when I stopped taking it, the bleeding was catastrophic and I ended up in hospital. I now take it continually but it isn't working yet (started it two days ago).

I've been bleeding for 4 months and have been told there are no gynae appointments and I'll be waiting at least a year.

Women's health provision is the pits.

Goodness me, poor you @ShowOfHands that sounds miserable!!! Were you fibroids found by ultrasound??? I want more tests as I’m not convinced this is solely down to pcos, but I don’t know! This is my fear as well, I have a 10 day course but just know it’s going to come back when I stop. Stopping the coil I think has caused my huge clots! The waiting lists are so long :( I think if you have such severe bleeding as us it needs to be prioritised !

I had a pelvic and transvaginal ultrasound which showed the fibroids. I've seen them. The biggest is tennis ball sized and they're distorting my uterus. They were very obvious but I have read about them being missed.

I have had to tell people at work as I am a teacher and some days I'm flooding tampons and pads within minutes and can't get through lessons. I've been shocked by how many colleagues and their friends and families have been through the same.

I can't believe I can't get any meaningful help. And I know that the first appointment in a year won't necessarily be a solution as presumably, they won't have any clue of what is happening with me without any recent scans and the wait for treatment or surgery wait is going to be months/years again given current waiting lists.

@ShowOfHandsgoodness I do feel for you. That’s really tough. Is there an option for you to go private?

It mat depend on your practice but as the guidelines FROM NICE and RCOG have changed, GP surgeries should be able to offer the standard pain relief? Unless there's something specific they cannot? As a practice will have licodaine etc, so that shouldn't be the issue.

If you can, you can either ask your GP pharmacy, about increasing the dosage for tranexamic acid but see if the Norethisterone helps first if you want. Is it only a 10 day course as a trial? I'd ask for longer.

Other than this, do you feel like your PCOS causes you any other problems? Seeing as an ultrasound was only 2 months ago, it would be a pretty fast growth of fibroids if you had them. I mean maybe your GP would do a repeat scan? It's really up to them and I see why they may want to wait since the scan wasn't that long ago. You could maybe get one privately if you want it now? Or just talk to your GP and see what they say. The coil falling out, pretty soon after insertion, speaks either to perhaps not the best insertion or just random, it happens to people for no reason sometimes.

What was your biposy teted for? Was it keyhole? Do you think naproxen or mefenamic acid would help you? Its more wirh cramps and pain, as its an anti-inflammatory. If you want to try it, ask your GP.

@ShowOfHands The first appointment will likely book a myomectomy straight away. They don't like doing further scans, if they don't have to, and fibroids are a pretty easy like quick diagnosis by ultrasound and won't require another one. When you do get your appointment date, ask your GP to book another one pretty soon before it (ultrasound). They should be fine with it as you won't really need one till then anyways. Then make sure the report at the very least can be on your NHS app/sent to your GP before the appointment. Even if you just shoe it to them, they'll take it and not re-ordeer it. Though, I doubt they'd reorder it anyways. Also have the other report (likely GP sent it to them etc) which you have now and make sure you refer to it as well. I'm very sorry the waits are long, but gyne is very overwhelmed across the country, but as a result they'll want to get you dealt with quickly, because fibroids are pretty 'easy', like you just take them out or a hysterectomy. Hopefully you don't have to wait as long as they said.

@TheLivelyViper you’re so knowledgable, are you a doctor? Thank you for your advice! Things got pretty bad in the night so we’ve decided to go private and seeing a gynaecologist at midday today :)

Ps. Biopsy was to test for endometrial cancer

Give us an update on how it goes. Was it just more clots and heavy bleeding in the night? Hopefully they have a good plan for you.

I'm not a doctor, but have my own experiences with gyne, advocate for women's health things and also am slightly nerdy eith everything, so I read research papers on treatments, hospital guidelines, NICE guidelines etc. Somewhat to help me and then just got into more in general. A GP practice should be able to have licodaine, some numbing etc. They likely use for other minor procedures as well. So they shouldn't be making you wait, unless it's one speicifc other thing, which they can't do, but NICE guidelines say most of the pain relief should be available in GP.

Ah right the biposy was testing for cancer. That makes more sense. You may want to consider adenomyosis with the gynaecologist today, I'd bring it up. An ultrasound can normally pick it up as a provisional diagnosis for adenomyosis but an MRI can give a definite one. There are different types of adenomyosis: so focal adenomyosis and diffuse. So difuse tends to be little to medium pieces but all over the uterus inner muscle. But focal is medium to big chunks in balls at different areas again in the inner uterus muscle. As they biposy the lining of the uterus it can be difficult to tell about adenomyosis.

Adenomyosis where the lining of the womb grows into the muscle wall of it, but unlike endo is localised to the uterus only. Thus, symptoms are mainly a week or two before a period and during your period.
www.nhs.uk/conditions/adenomyosis/