Any APS patients out there suffer wit... - Hughes Syndrome A...
Any APS patients out there suffer with severe period pains..I'm wondering if there could be a link to my years of suffering ?
Hello, Absolutely I do... although after all this years it has transpired that I have had systemic lupus all along as well as the other things including Hughes. I can only describe my cycle as flu combined with final stage labour... truly awful. So.... sympathies. Mary F x
Interesting Mary, giving birth was a doddle for me in comparrison to the period pains I used to get at 14 years +, thanks for response !
Yes always! Ithought it was to get better after having a baby... but no such luck!
Yes, I used to pass out from the pain! Have had nine pregnancies resulting in 3 children, one set of twins, and still am in total agony every month. X
Yes I suffered really badly with period pain from the age of 16, diagnosed with endometriosis at 21, in my 40's now and still see a gynae to try and alieviate pain. After having my kids it was slightly better for a couple of years. There was some research to see if endometriosis had an auto immune link but never saw any conclusions published.
I too thought labor pains(. --THIS is what all that fuss is about?!) were mabe 10 - 20% of my monthly period pains. I would pass out too. Endometriosis was always suspected/diagnosed whenever my unconscious self was found somewhere and I ended up in some ER. But no, further testing always showed that no, I did not have endometriosis. Trial doses of the pill, (this was in the 1970 s.) made things worse. Or a cyst. Or an STD. Or an ectopic pregnancy.
Finally I landed in the ER when an elderly, kind ob/GYN happened to be there too. I was treated and released, as usual, but this OB/ GYN urged me to come see him as a follow up.
I did go, but i tried to gently explain to this kind, elderly doctor that many before him had tried and failed to diagnose me. But I appreciated the effort.
He had seen other cases like me. He asked many, many questions about family history, occurrence of autoimmune diseases and mental problems. His theory? Either a hyper sensitivity to, or an over abundance of, the estrogens. His 1970 s solution? Take naprosyn as an anti-inflammatory. He postulated that the naprosyn would counter the excess inflammation the estrogens were creating.
I started the naprosyn when I spotted at ny next period and . . . Wonder of spectacular wonders! I cramped. . . A BIT! A teeny tiny bit. I realized that this small amount of pain must be what all the other women felt each month. Yes, I was in a bit do pain. Maybe a 3on that subjective scale. But I could walk! And talk! And go to class! And not pass out on the street!
And I was totally slack jawed in amazement! The docs at my university used to give me morphine and other such but it never, ever dulled the pain. And now this little over-the -counter pill dialed back the pain by a full 90%!?
And that was the end of my dysmenorrhea hell. As other women from my mothers family had discovered, after my first child my hormone proportions seemed to reset and I no longer needed the monthly naprosyn doses.
But ever since! naprosyn has been my magic pill, gauranteed to reduce pain and inflammation. And this horrid, latest pain and disability flair in my left hip went out of control when I stopped taking the naprosyn. ( my EX rheumy was convinced I was going to bleed out). Now, after 2years of pain and disability I have resumed taking a teeny, tiny dose --1/2 pill 2-3 times a day. And once again! Magic.
(Or does this most recent flair influenced by the bio identical, compounded HRT my doc put me on? He says the HRT is to keep the osteopenia hip from getting worse. And I don't argue with him -much. He has data to support his argument. All I have is a theory.)
So , have you tried naprosyn for your periods? Suspect inflammation and try reducing inflammatory foods, etc and see if this helps.
At one point, post children a doc tried me on bio identical, compounded progesterone cream. My period pains were negligible at that point, but that cream sent the pain to zero. I also had more energy and focus day to day. Maybe that would help?
Excess inflammation causes autoimmunity.
Good luck. I hope you find that key. I know what you 're going through. Hang in there. Some say it will go away. I hope that say is soon.
Interesting.
Day not say! Damn you auto correct!
This post stirred a memory. I had horrific period pains until finally a sympathetic surgeon gave me a much wanted hysterectomy at 34. There were days when I could hardly walk and the time between each cycle got shorter and shorter and the clotting was ghastly. Two pregnancies later and it was no better. I always just thought I was unlucky. It certainly put me off having more children. I couldn't wait to have my gynae op.
Not sure about an actual link between APS and period pain, but I too have endometriosis and from what I have read, one of the current theories regarding endo is that it is indeed linked to auto-immune problems - I have lupus/Sjogrens. I have just started taking mefenamic acid to reduce heavy bleeding/clotting and pain during and after periods. It's too early to say whether this is making much difference but certainly my last period was much better although hard to say whether this is psychological or coincidence just yet!
The following research extracts do seem to point to an evidence-based link although it would be good to see some more recent research data:
journals.lww.com/greenjourn...
I have had APS for many years and my periods have never caused me too much pain. When I began taking Warfarin about fifteen years ago, I did notice increased blood flow, but it's not that bad, and the pain is really nothing to complain about. I guess I'm fortunate in this aspect.
Note: I've never been pregnant.
Well that made some very interesting reading..thank you so much for taking the trouble to answer my question. Gina D in particular that was a fascinating story. Incredible to think how many teenagers are still suffering as we did all those years ago..I wonder how and if things have developed for them by now ! x
Hi Rhian, I suffer from really painful periods and have often wondered if it is to do with APS too. I used to be on various treatments but once I had my DVT they stopped them all and all I can take now is the usual painkillers. Going to look into the drug Gina mentioned. Hope you find a solution to your pain. Jenny
Hi
This is sounding familiar again!
Yes, I have diagnosed endometriosis by laparoscopy. Period pains horrendous until I had my daughter (now 8) and it cleared up loads!
Just starting to creep back now
