Menstrual issues?

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.

11 Replies

  • Hi Wendy

    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.




  • Hi Wendy

    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'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.

  • Hi,

    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?


  • Everything flares up with me around the time of the month, I have to try and book it in and do nothing. I do have endometriosis but the inflammatory bowel, vomiting and diarrhoea get worse at menstrual times. I have the opposite problem of very painful and heavy bleeding, and it is irregular but tends to last very long or happen too soon. I end up taking the main two menstrual days as sofa/ bed days or holidays, and just riding it out with the hope it gets better.

    I come from a family that suffers ovarian problems (cysts and ovarian cancer killed off my Mum at 54, and her mother/my grandmother at 42...I am 48 now, no kids, but still problems.

    I can totally see how Behcets would mess up the ovaries and uterus. Blood is involved and obviously that means vasculitis. Also I can see that a lot of meds we take interfere with the cycle anyway (steroids for example).

    I have had a similar thing with problems with too much Prolactin and FSH that became elevated just before I started peeing myself. Turned out I had Pituitary Failure and Diabetes Insipidus causing the peeing, but also this was right after 5 yrs of steroids and I cannot help but think they were the cause of me losing my body hair (don't need to shave under my arms ever again...or my legs...) and getting pituitary problems. The docs think not, they think it is because the pituitary gland produces hormones which travel along a nerve root with a rich supply of capillaries and that vasculitis in that part of my head could have blocked the hormones from getting to where they are needed to be active.

    I have loads of conditions that are very rare, all at the same time and supposedly independent of each other....which is odd. I have a disease in one eye which is supposed to be one sided, and the same disease in the other eye independently of the first is rare to begin with, then doubly rare to get it in two eyes.

    Everything about me is odd, which to be honest is why folk like me end up with a diagnosis of Behcet's Disease in the first place. I am sometimes envious of people who have diseases that have a clear list of general symptoms that everyone gets, and a proper way of diagnosing with tests, as well as a clear plan of treatment and reliable prognosis. Then at other times, I am relieved that if another BD patient got a really rough deal from their symptoms it does not automatically mean I will too and the fact that BD can flare and go in certain places, does give me hope....although after 10 yrs I am waiting for the proper remission to happen!. With us, it is all ad hoc and random and no two people are the same....all we can do is share our experiences of the oddness of it all, but even if two people get similar symptoms it is often still different in how it affects the person or with a different list of other symptoms....

  • 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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