Severe Menstrual Clots

[Danielle2419]

Hi all,

Hope everyone is coping well during the lockdown. I have been experience very heavy periods on numerous occasions, however they vary sometimes on how long they last. For example I can get one that lasts for 4 days and some for 7. However each one presents itself with huge blood clots. I am very prone and always have been since getting Lupus and APS, however it just doesn't seem normal. Correct me if I'm wrong! Imagine your palm of your hand that's how big some of my clots are. Sometimes they even prevent in a weird worm shape. Its not consistent so may present first 2 or 3 days and then slow down to almost nothing then il get in the bath and boom, clots are back.

I ain't got no idea why they are like this I feel generally well otherwise. I experience tummy and back pain on first 2 days but to be honest I dont even take meds for it I have got so used to it half the time. Just to add I dont get a clot every time I wipe I just get it randomly and more so after coming out of a bath.

Any advice appreciated.

Thanks

Danielle

[rach1081985]

Ask v referred gynaecology... Endometrial ablation could help u it helped me and my extremely heavy periods abd passing of clots.. I have post on here to do with it and my womb trouble feel free look or message me

[Ozchick]

I had these long before I was diagnosed with APS. Finally had a Hysterectomy at 40 after one particularly bad 'flood' that ran down to my shoes and large clots. I was anaemic for a long while and decided enough was enough. looking back there were so many different symptoms that were related to APS but were always dismissed as Hypochondria. Finally diagnosed when I had bilateral PE's and had to fight with the ED doctor to have a scan. (I think he just did one to shut me up and then later had the grace to apologise when PE's were found.)

I had finished having children (after difficulties conceiving) and Hysterectomy was a relief to be free of both pain and bleeding. Get a referral to Gynae and you may even strike lucky and find one that understands APS!

[WendyWoo50 in reply to Ozchick]

I was like that. At 16 I was put on the pill to ‘control’ my periods after one lasted 3 months.

I used to suffer so badly even on the pill, I remember standing in the shower crying as I lost ‘pints’ and huge clots. After a fight I persuaded my go to do a blood test. I was only just above the need for a transfusion.

I was 33 when finally I had a hysterectomy but it was years before APS was diagnosed.

Apparently I had endometriosis.

Good luck / total hysterectomy was the best thing I ever had. No looking back. Freedom. A life again!!!

If u don’t want more kids / jump at it. I did want more kids, but to be honest it wasn’t going to happen while in that state! 💋 x

[Bobbydoodle]

Hi

I’m sorry to hear you’re struggling this. I had a period continually for nearly a year and in the end like another of your replies I had to have a endometrial ablation as I was severely anaemic and had to have monthly iron infusions.

What I didn’t know was that it could be anything to do with my APS or Lupus but given your other replies maybe it was? I was diagnosed with APS the same year I didn’t relate it and I was recently diagnosed with Lupus.

I was under a gynaecologist for the bleeding and he was wary of doing a hysterectomy for me due to the APS and warfarin and having an anaesthetic which is why we went down the endometrial ablation route as I was awake while they did it which I personally wouldn’t do again as I didn’t like being awake during the procedure but on the positive side once I healed from it I have not bled one single day since which obviously is bliss 😊

Speak to your APS specialist maybe if you have one (I currently don’t) and also ask to be referred to a gynaecologist you don’t need to suffer like this and should be checked out.

Take care

[MaryF Administrator]

I think it would be a good idea to have a chat with your GP and ask for their advice on a referral, as you can see from the replies, you are not the only one to have this sort of thing going on. MaryF

[chelb29]

Hi, this has been the story of my life for the last few years, very very heavy periods with flooding and clots. On warfarin and have 3 monthly iron transfusions because of it. Finally after a lot of toing and froing from various Drs and consultants, I finally saw the gynaecologist at Guys Hospital who agreed to do an endometrial ablation. He put me on the list for an endometrial ablation but have to be under GA and stay overnight. Unfortunately due to Covid it has obviously been severely delayed now. They felt a hysterectomy was too risky due to my APS and other issues, so wanted to try this first. Definitely ask for a referral to the gynae team for review.

[Ageingfemale]

Definitely ask to see a gynaecologist. I was diagnosed with endometriosis. I was bleeding terribly and lots of clots. I knew I had to do something about it when my husband rang me to ask when was I due on as he was organising a business meeting and didn’t want to be away because could hardly move without flooding. So I had a total hysterectomy at 30. I must say I don’t miss those days.!

[GinaD]

I had menstrual issues most of my life. ( Now post menopause.Yeah!) Extreme pain and huge clots. Huge! And frequently passing out. A typical monthly routine. --and this was back before Dr Hughes described our syndrome and proved its existence. Doctors suspected I had lupus, but despite positive LA tests and the fact that my father had lupus, I was never diagnosed.

My grandmother ( on my mothers's side) and her sisters had experienced the same issues and predicted life would get better after I had my first child. So..... hormone issues from one side of my family, and autoimmunity on the other. And here I am in the intersection.

An OB/ GYN was sure I had a progesterone deficiency and taking progesterone-heavy birth control pills helped, but not much as those pills also had estrogens, which. he reasoned, I already had too much of. And yes, after my children came my monthly episodes were better but still bad. Then a functional med doctor prescribed a topical progesterone cream which had to be compounded locally because the cream expires quickly. And Wow! My periods, which had moved from horrid to bad, now moved down to just annoying.

Now, I am post menopausal, and the entire month is mine! A different functional med doctor suggests as estradiol supplement. But I back off shaking my head " No. No, no. No, no, no." Am I right? Or is the doctor right? ???

Hope this story has some info that may help. One more observation: I discovered in 2004, ( about the same year I became post menopausal) that I have a gluten allergy. Which I inherited from my mother's side. My grandmother and all her sisters were never diagnosed with Celiac, but hey ALL lived through the progression of symptoms of undiagnosed and untreated Celiac.

[jessie68]

Yep me to, nearly died twice in resus A&E through huge clots and blood pouring from me. Dr Khamashta said its related to APS especially the huge clotting loss. Please see a gyno though as you cant carry on like this bless you X

[TwoH]

I had responded this morning but I don’t see it here.

I had the same thing for a while with heavy nonstop periods. Ultrasound showed very thick lining. After a biopsy to exclude cancer they did a D&C and ablation. It really helped. I don’t know if it was APS related but it could have been. Hopefully they can give you some relief!

[dottiedoris]

I’ve had horrendous periods since I was 15 years old. I literally had to change every 20 minutes 24/7 for 7 days. The blood clots were horrendous - I’m talking the size of a large butternut squash. The pain that used to cause was just awful. I never knew that it wasn’t normal! A few years after having my daughter, I had a coil fitted (don’t ever do that if you have APS!). That had to come out due to pain after 4 days and I subsequently found out that it had caused a blood clot in my pelvis, which then caused a PE. That was only discovered post endometrial ablation. It was only after having that procedure I was diagnosed with APS. In terms of the ablation, despite the problems it caused, it was the best thing I ever did! I’ve gone from it being the most horrendous thing ever & anaemic to hardly even noticing it. I use the lightest tampons you can get now for 1-2 day’s and they last 3 days at the most. I was warned that the bleeding may get heavier with being on warfarin but so far so good. If you’re still hoping to have children, then you need to wait until you’re done before you have ablation.

[Stereolover]

I feel for you so much. My periods were horrendous - I took after my mum. As for the clots I won’t go into detail. I only had one normal week each month. Two weeks of terrible PMS then seven days of flooding, bleeding and PAIN. Then my normal week.

I had endometriosis, adhesions and a twisted tube all on my left side. My gyny who was my fertility doc spent 2.5 hours ‘unsticking’ everything. Then it was time to realise I was able to get pregnant. Twenty days before my 35th birthday my son was born, thanks to my doc. My son was around 2 1/2 when I had a full hysterectomy all done by keyhole. A cyst the size of a grapefruit and everything all removed, cervix included. Apart from giving birth by c section it’s the best operation I’ve had and I’ve had many. I’ll never forget the pain and blood loss and would recommend a hysterectomy to anybody who doesn’t want children. I had a womb ablation before this but the recurring cyst on my left ovary kept coming back.

Each to their own, it’s a personal choice and if you have APS I doubt you’ll be able to take HRT. As soon as I was diagnosed I was told to stop them immediately. Luckily I have never suffered with hot sweats whereas my poor mum did. As soon as you have a full hysterectomy you go straight into your menopause. Hot or warm baths always made me worse.

Wishing you the very best 💗