one for the ladies mentral bleeding - Hughes Syndrome A...

Hughes Syndrome APS Forum

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one for the ladies mentral bleeding

kezebabe profile image
12 Replies

hi this is rather horrid and embarrasing but i have aps and my periods are becoming unbareable im passing etremly large clots one after the other i recently passed 5 huge ones im getting a little worried im in so much pain does anyone know if this can be linked to aps and altho im 27 can i be treated in hysterectomy way sorry for grusome story x

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kezebabe profile image
kezebabe
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12 Replies
Jade profile image
Jade

Hi sorry to hear you are having such a hard time.

After I went on warfarin my periods changed drastically, prior to warfarin they were no trouble. After they became very painful, so painful I figured that each clot was being passed with a contraction, as I had experienced in childbirth. As I m now 51 I have plodded on knowing the end may be near.

At your young age it would be best to seek help firstly from your GP then maybe a gynaecologist who also knows about APS.

I do know a lady with APS who had an ablation, which is much less invasive than a hysterectomy. You really don't want a hysterectomy at your age as you may one day want children.

Please seek help from your GP. X

kezebabe profile image
kezebabe

ive had five kids lol n yes i knw exactly what u mean i discribed it to my husband its like childbirth passing them ive got an appointment next week drs gna try a coil its bit different to usual 1 as this releases a small amount of hormone but wnt enter my blood stream so fed up of the pain i end up being anemic i have so many problems at min n they all seem come bk to aps thnk you for your help x

stillwaiting profile image
stillwaiting in reply to kezebabe

My periods were dreadful - didn't know I had aps then - had (Mirena) coil - brilliant. Now diagnosed, on warfarin - coil still brilliant :)

Lynn.x.

Jade profile image
Jade

Oops sorry, 5 kids! Guess you've earned your stripes then.

But I do feel if major surgery can be avoided its best. Having APS obviously complicates things quite a bit.

I toyed with the idea many times but decided in balance I could cope a few more years.

So here I am wondering how long before it ends and from period point of view I am excited at the prospect of no more periods.

Let us know how you get on.

kezebabe profile image
kezebabe in reply to Jade

im excited by that too lol but wnt b for while n yeah will do thx hun

The doctors at St Thomas' recommend the Mirena coil for any APS women who are on warfarin. I've spoken to lots of patients like yourself so please don't be embarrassed :) The one that stands out most was a woman who was an ambulance driver and she had to go off sick every month, because there was no way she could work her shift without having an accident - really embarrassing for her! The coil did give her her freedom back ...

Hi there. I know exactly what you are talking about. Had the same for 5 years and it controlled my everyday life. Eventually was told I have Fibroids and Endometriosis. Fibroids gave the huge blood clots and endometriosis the pain. Was going for op to deal with both but had stroke 2 weeks prior. Mirena Coil did nothing for me so was put on Leuprorelin injection monthly. Completely stopped period and has been checked as safe whilst on Warfarin. It has made a huge difference to me so if you look at the coil and it doesnt work this may be another option. Best of luck hope you get it all sorted out. cath x

Holley profile image
Holley

My cycle was exactly as you described in your initial post. I had an endometrial ablation performed by my gynecologist. It was an outpatient procedure and I haven't bled since! Best procedure I've ever had. They can do it by inserting a balloon type tool and scalding the layer or scraping it out. I've had other issues like ovarian cysts and extremely painful "cramps" if you can even call them that. My doc has me on norethindrone pills too. She wants to keep my ovaries in as long as possible since I can't do hormone replacement.

Hilda_G profile image
Hilda_G

Hi, like Holley I've had an endometrial ablation. I had the balloon type and should have been a day case but morphine and I don't mix and I was vomiting so badly after the op I had to be kept in overnight (N.B. I was given the morphine without being told, if I'd known I would have told the doctor not to administer as it makes me so sick).

I went home the next day with some codeine tablets, but had no pain so didn't take any of them!

The ablation has meant that I now have very light periods. I was originally hoping for no more bleeding at all, but I quite like the reminder that I am still pre-menopausal!

My advice is to get it done, it really has revolutionised my life! I am no longer spending three weeks worrying about my next period, then spending a week mapping out where all the loos are wherever I am going. I am also not spending a fortune on tampons and sanitary towels (I tried a Mooncup, but it's not suitable for a low cervix), not worried about ruining mattresses, and not worrying that I'd have to ring in to work "sick" yet again.

danaja profile image
danaja

I also had an ablation. It did take care of the bleeding. But it also made sex slightly painful. Kind of a crappy trade off. Hopefully that is not a typical outcome.

kezebabe profile image
kezebabe

yeah dr gonna fit that coil she refuses any form of treatment that releases hormone x

kezebabe profile image
kezebabe

yeah just watched vid lol not havin the coil lol im terrified

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