sorry - just one for the ladies!!!!! - Hughes Syndrome A...

Hughes Syndrome APS Forum

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sorry - just one for the ladies!!!!!

emmaj profile image
10 Replies

Hi all, does anybody else have problem periods? Ive always had exceptionally long periods (8 days every 28 days) and awful ovulation pain (started at 18 along with the TMD) and heavy. This has been made worse by the warfarin, but lately theyve started to stop and start every couple of days (though still every 28 days),and this month just a spot and thats it. Got a docs appt on Fri to discuss Does this condition make that happen, I also started very early about ten yrs of age and maybe its making me stop having them early too?? Im going to get checked out to rule anything more sinister out anyway but just wanted opinions, thanks x BTW I have had my appt through to see DR Kamashta through for 30th Noveber too! x

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emmaj
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MaryF profile image
MaryFAdministrator

Hi there, this sounds a bit rough on you! sympathies, I have a slightly different profile to you as I have lupus and other things as well, the lupus clearly been going since teenage years. All I can say.. is that since age 12 mine... the only way to describe them are like having fully blown flu and being in final stage labour for up to 10 days a month or more. However I think this is very typical with autoimmune. I am sure at St T's they may have some ideas for you! Let us know what they say, and I understand only too well, how annoying it to be a lady at times...!!! Mary F x

emmaj profile image
emmaj

Yep I always get really tired the week before - like i have no energy and motivation and just want to sleep and painful ones though not to your degree! My ovulation was always worse - will let you know thanks x

emmaj profile image
emmaj

Forgot to say,ive also had a throbbing sensation for a while now like someones knocking in your stomach from the inside but as i have that all over my body i just put it down to nerves/muscle problems - i also had cells removed at 20 after a laproscopy found dodgy stuff,and a persistant cyst pops up every month. I also had a fibroid when I had my last pregnancy.

Suzypawz profile image
Suzypawz

Hi Emma, I have been having periods every 2 weeks, heavy & lasting 7-14 days recently :(

I have had pains in my lower stomach for around 15 years....they found out about 8 years ago it was down to 20 cysts on my ovaries!!!! I was put on a course of Noresthisterone & it has shrunk them!?!! I believe they have gone now by the looks of the last ultra sound scan?......but only got taken off the tabs last year!! & was told I was put at risk by taking them due to me having APS!!!!! but I'm off them now & they seemed to have worked....

As my last post has said I'm going tomorrow for a hysteroscopy to have a large polyp removed & lining from the womb :( due to this...... so hoping this is the cause & will be ok after?

With the loss of that much blood you will be very tired from it all....& I hear DR Kamashta is extremely brill'!! :)

Good luck with it all, I hope they sort it out soon for you x

emmaj profile image
emmaj

good luck for tomorrow,and thanks suzypawz x

Suzypawz profile image
Suzypawz in reply to emmaj

Aaaaahhhh thanks guys :) I know/sure I'll be fine, it's just uncomfortable & an embarrasing 'position'! to be in.......:(

I had the womb 'burned' away after my 1st son, so I'm sure it'll be similar to that......

Anyway....back to you Emma!....good luck with your appointment hun xx

Jade profile image
Jade

Emma I used to be very lucky with monthlys, they were very light often 35 days apart and no problem really. However I always had the sorest boobs ever for a full 2 weeks before. They felt exactly as they had when I was pregnant. Once on warfarin they altered to every 28 days, heavy by my standards and so painful for one day it's like having contractions literally, they push out the protection I use.Trouble is I am 50 so approaching meno could also be a factor.

I hope you get some relief very soon.

pinkpink profile image
pinkpink

I have always had heavy periods. Every 23 days for 8 or 9 days. But being on coumadin can make it worse for me. I have been on coumadin for two years. At one point I decided I wanted to eat more vitamid d vegetables so they upped my coumadin. Well that made me have my period for two months straight and my hair started to fall out. So I backed off the veggies and my coumadin dose went down and things are back to where they were. Never a dull moment!

emmaj profile image
emmaj

cant win can we!! x

Yes i suffered from my teens right through until i was 40 when i eventually had a hysterectomy. I kept my ovaries as i didnt want to go on HRT and Warfarin for the rest of my life. That said, in July i had an op to remove my right fallopian tube and ovary and feel better now for it.

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