APS and periods

[sailorbaejon]

Hi everyone,

To clarify, I’m a man, but writing as genuinely interested in hearing views and experiences of women with APS and what, if any, impact it had / has on periods.

Reason I ask is that my daughter has terrible period cramps, to point where she struggles to function. She’s 26 and is also talking about the future and having children with her partner and I’m very conscious of the awful impact APS can have.

She’s had every test and check, scan, internal inspection, and more for endometriosis plus other possible causes, all negative, but in the back of mind I wondered if APS would have an impact?

I’m really not an expert, and I do suspect I’m making an erroneous link, but I thought if anywhere worth asking a question then here would be a good start as within the community there’s so much support and openness to talk about anything.

Would be really grateful for any thoughts on this. Don’t want her to go through the stress of testing if not needed.

Best wishes to you all as always, and thanks.

Jon

[MaryF Administrator]

Hi, good you are supporting your daughter, I went through hell and back with mine, I was ill for at least two weeks out of four every month, however what I did find out, (not via NHS), as the tests were simply not good enough, was that I had an additional Thyroid problem, (I proved this by buying my own private tests), the NHS only does the TSH and maybe a couple of others, rather than a full panel. It is the same for B12 testing. It is easy with Hughes Syndrome/APS and other autoimmune diseases to have a hidden Thyroid problem and along with that also problems with B12, these can make the menstrual cycle a lot worse. It is always good to look at the co factors alongside the main disease. So many people get told they have Fibromyalgia when actually it is a hidden Thyroid disorders and at times also B12 deficiency. Dosing B12 before a test is not a good idea as it shows up for a long time in the system and can spike results. MaryF

[GinaD]

I also had painful. debilitating menstrual cramps --along with passing huge amounts of blood. I was told by various doctors that; because I was female I was prone to hypochondria; that this is expected since my father had lupus; and that it was ' just' fibroids. And from my maternal grandmother and great-aunts I was told that "this is a female Donahoe thing," and that "your menstrual cramps will go from awful to normal after you birth your first child." 2of those aunts confided in me that they had made bad husband choices just so they could get pregnant snd so get rid of the monthly torture sessions. I did NOT opt for an early marriage, but I was told by a Vanderbilt doctor (my college) to eat high Vitamin B foods. I did and monthly symptoms improved--less pain but still passed huge amounts of blood. Vandy docs kept up with my anemia and feared I may need a hysterectomy. Then, after I married at age 26 and I delivered at age 27 those monthly periods went to 'normal.' I suspect that my then-undiagnosed Celiac had a role to play: my inflamed intestine was not absorbing all the vitamins I needed. And since I was diagnosed with APS after menopause I can not draw any straight lines between APS and my cramps. And I suspect --please note I am an English major! --That the inflammation in my gut caused by gluten induced issues spread to inflammation of my uterus. So, its hard to do, but you might explore an undiagnosed food allergy. The usual suspects are gluten, soy, certain nuts.

[MaryF Administrator in reply to GinaD]

Thanks for this, it took me years also to realise I needed to be gluten free, and of course I then needed B12 injections, this and Thyroid is so often mismanaged. MaryF

[GinaD in reply to MaryF]

Sometimes writing is what allows me to make connections. I never associated those debilitating monthly cramps with probable gluten induced inflammation of my uterus UNTIL I was writing my reply ( above.) Assuming my association is correct, I wonder how many adolescents are suffering?

[KellyInTexas Administrator]

I would cramp, pass horrible clots, then over flood , faint and vomit, and have terrible symptoms of what was likely POTS/ and MCAS ( mast cell activation syndrome. This began at around age 13/ 14 and cleared up around 16/17 .

My mother took my to an OBGYN at 14 for the first time to try to figure out what was happening. She prescribed 1/2 of a dose of “ light birth control pills” ( cut the pills in 1/2) due to my mothers “history of multiple blood clotting events.”

This light dose of hormone did help quite a bit.

This would have been in the early 1980’s.

( I had severe light threatening ITPP at 18 months of age so we already knew to be very careful with my blood around the time of the onset of menstruation.)

[myarabella]

Hi there! If you are concerned about APS please see to.it that your daughter is tested for the three markers. If she does have APS, she must NEVER go on birth control hormones as these can lead to a clot or stroke for people with APS.

As far as periods go, I had totally normal period until just after I had my baby. What followed pregnancy were heavy periods that would go on way beyond the normal 5-7 days, horrific clotting, horrific migraines and all kinds of other problems like becoming anemic. I ended up having ablation surgery on my uterus which results in not being able to have children, but is not as invasive as a hysterectomy. Test first before taking any other action.