Just curious if any of you ladies have issues with your cycles since you've gotten ill? I feel like my cycles are getting worse every month. Such a pain. It seems to me that it could possibly be related since my Raynaud's is getting worse, my livedo reticularis is getting more noticeable, and I have more lesions on my skin, along with the petechiae and bruising.
Warning, might be a little graphic!
Last night I had severe cramping, passed a few large clots and bled very heavily. I took 800mg of advil and then within half an hour my cycle completely stopped and hasn't started back up yet. Very strange!! (and yesterday was day 3 of my cycle) Also became a bit dizzy. Trying to figure out what I can stand to eat today with my nausea that has a lot of iron in it.
Not sure if this is anything I need to talk to my Dr about. Or just wait until my next appointment. I somehow missed my hematologist appt (brain fog!) and need to reschedule that, so I will bring it up when I go there.
Just wondering if anyone else has issues? Not sure if this is just part of the vasculitis side of things or something else.
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wendya432
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I too have had problem periods since I have had Behcets. I am never regular and heaviness varies. I always feel much more poorly when I am menstruating and like you have Raynauds and more ulcers and bruising as well.
I have been considering asking for hysterectomy (sounds drastic) but I am not having children and feel so rough when I get a period. My mum had a hysterectomy when she was 30 and my sister at 44. I am 41 and think I follow them with gynae problems but the BD just makes it so much worse. Let me know how you get on at the Dr's.
I was also wondering if the clot was related to something else. How old are you? It might be the start of menopause - it can happen to quite young people and take a long time. Also, I've finished my periods now but always felt that I was worse around that time.
About 5 years ago I started with a migraine that hospitalised me for a week. Then my periods became beyond heavy. I had an ablation which is a procedure that almost microwaves the lining of the womb. From then on my periods are next to nil. However since becoming unwell I can chart every stage of my cycle.
Its awful. The entire BD goes around my cycle... I've gone from never knowing when I was due to being able to forecast it due to symptoms of inflammation.
I'm only 45 and if I follow my mother I have around a decade left until the menopause ... Euk!!
My haven't gotten any WORSE but they have gotten more more of a pain in the ass to deal with because I can't wear tampons any more due to inflammation.
Also, I seem to flare up a week before my cycle is due, hormone surges I suppose.
I also feel I should add - my Dr says absolutely no hormonal birth control because of the increased clot risk Behcets gives me. I'm not sure if this is just me since my homocystine levels are high, though.
I had clots the size of my fist for three days and bled for thirteen days at the start of my illness. It was two years of one symptom after another until I was diagnosed with Behçet’s. I was on birth control when I started with the vaginal bleeding and it was severe!
I'm only 30 so I sure hope it isn't menopause. I've had my 3 kids and a tubal, so if they need to do an ablation or hysterectomy I wouldn't be sad!!
After my issues I stopped completely for 12 hours. Then had another stream of clots. Then nothing for another 20 hours or so. Very strange.
And more petechiae and some bruises on my legs. I had a weird headache last night. Might be time to call the doc and make sure everything is ok!
I do have a horrible surge of symptoms within the few days before I start and the first few days of my cycle. Tons of "foliculitis" (although they aren't infected or anything) My face is a mess with huge sores. I look like a teenager with horrid acne, although they are just sores not pimples. And I swell up like a balloon!
Thanks for all the replies. Sometimes I guess we need to get things checked out since who knows what is actually behcet's and what isn't. (and since my rheumy is still clueless despite my textbook symptoms)
I really don't want to have any surgeries if I don't have to, but if it is necessary than I'll do it. I know when I had my lithotripsy procedure, where they do the ultrasound waves to crush kidney stones, I was basically bedridden for a week because it was so hard on my body. Something that most people have no issues with.
Since I have been sick (which began at around age 16), my periods began slowing down-- they got much lighter and then started coming sporadically. Eventually it came to the point where they just stopped all together, and I haven't had a period or even any spotting for three years now. I was diagnosed as having "autoimmune premature ovarian I barley have any estrogen and have high prolactin levels. But because it was my ovaries that were destroyed, no hormonal replacement will help me. I basically have to live with the fact that at 25, I have already gone through menopause and will most likely never be able to have my own children (although because of the Bechet's and all my other autoimmune issues, getting pregnant probably wouldn't of been a good idea for me anyways.. and there's always adoption!). I don't really mind it because not having to worry about and deal with periods on top of being sick gives me a bit of break at least. I don't know for sure if my ovaries were attacked as part of the Behcet's or as a separate autoimmune issue, as my pituitary gland and adrenal glands have also been attacked at different times, and the doctors all tell me that it is nearly impossible to have all these rare, separate autoimmune disorders at the same time in the same person-- so who knows. I have a theory that it was the vessels that became inflamed and attacked within all these organs because of the Behcet's-- mainly because they couldn't find any autoantibodies associated with any of them. Another thing I was being told for a while was that my absent periods, whacky hormone levels, and my low-cortisol/adrenal insufficiency was all being caused by the pain meds-- this was some stupid theory that a gynecologist came up with because she knew nothing about autoimmune and wanted to blame it all in something. Many people are on pain meds and you think it would be common knowledge that they can cause these problems, if it were true. But I do wonder if anyone else has been told a similar thing?
I'm 23, I was diagnosed with Behcets about 3 years ago. Ever since my periods have been getting farther and farther apart and when ever I do have a period it lasts maybe a day or two and is very minimal. I'm worried I may have the same effects from my Behcets as you have. Ill go months without having my period and it kind of freaks me out because I can't be on birth control because of the whole clot issue. I was wondering how you found out and what I can do to know what's going on with me? I haven't thought much about it until I read your reply because both my mom and sister had irregular periods but never as irregular as mine.
i am the mother of a behcets patient. he is a boy/guy (23) so of course he doesnt have the menstral stuff but i personally think behcets messes with your hormones. my son had to start taking Androgel (testosterone) at age 14. he fully developed down there and everything works (as far as i know) but he had cancer at 11 and behcets that was not diagnosed. since his numbers for progesterone/testosterone were so out of whack they put him on androgel. of course that is another medicine he takes that i dont know if it works but it is not "hurting" him and hopefully it is not damaging something. anyway my point is that your cycle may be bad because a lot of people have terrible cycles but wanted to throw my two cents worth in that my son with behcets has hormonal issues. we need to get back to the endocrinologists but it is hard to squeeze in one more dr appt, one more copay and the hassle for him is he knows they cant do anything. i am not saying he says that like "poor me" it is more than he has seen literally over 100 drs and only found two that were helpful. whenever a new med is suggested he doesnt even get his hopes up because everytime we said "this is really going to work". nausea is such a terrible issue. we have not found anything to work except promethozine and the problem with that is that it just knocks you out and it has a bad hangover effect. what a freaking nightmare. my kid (23) now has been throwing up or nauses for 12 years now. i really dont know how he does it. some foods dont make him sick some days and others they do. sometimes he has nausea for no reason he can think of. sometimes a smell will make him nausea. we just dont know. good luck
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I had problems from an early age 12/13 with my periods. First genital ulcers 14 but nobody new what they were then. Anyway my periods were always heavy and I used to get lots of pain sometimes sick with it and huge blood clots lasted for about 4 days then finished. The only time the pain got better was when I had my first baby at 25. After that my periods changed much lighter but still not for very long. After my second child 27 my periods were intermittent maybe 7 a year after my third child at 33 my periods got less then after my fourth child at 37 my periods stopped a couple of months after birth. This continued for 2 years when I then bled for 2 weeks had tests and scans everything normal. Then they advised was going through menopause at 39. Had another bad period again checked out horrendous bleeding at 41. Then nothing. I was diagnosed with BD at 50. 8 years ago. I am sure with eating differently only organic and eradicating various things I now have my BD under control, and after my menopause things did get better. I went on the pill once for a couple of months made me very ill. All the best xx
My cycle started at 11 and straight off really painful and heavy. I suffered for years with the pain and bleeding. The first time anyone really took me seriously was when I said I can't have kids. A really long story shortened: I now have kids, but I need a Mirena IUD to keep the pain away with an extra daily dose of Visanne.
When I was young I tried all the main hormonal stuff, but those tablets mess with your head and body. This combo feels stable. And for the record: even if they don't see anything with an ultrasound your body can be really messed up by endometriosis. Doctors shouldn't say pain comes with being a woman: it shouldn't and doesn't.
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Genital ulcers
Is it really Behcets?
