Question for the ladies: Hi, I was just... - Behçet's UK

Behçet's UK
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Question for the ladies

Hi, I was just wondering if anyone's symptoms got a lot worse just before their period, I get so ill beforey period. Fevers, ache all over, nausea, Ulcers, Headaches, swollen glands and absolutely awful tiredness :( 

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Yes, for myself , hormones trigger the migraines, canker sores , extreme fatigue as just a few...:/

G

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Yes for me also!!!! I can tell the day I get my period because my uveitis in my left eye, that's actually controlled now, begins to ache! When I had full blown uveitis it would flare up worse. Also my vaginal ulcers would flare after my period. I totally agree that hormones are connected 

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Hi Westyorkshiregal, Sorry to hear that you have Uveitis. I often have a lot of pain, almost always in my left eye. I've just had a look at the symptoms on the NHS website and noticed that even though the symptoms say blurred, cloudy vision, red eye, and floaters, if you have it long term the eye can look normal. I don't relly get these symptoms only the severe pain, which can sometimes spread over my head and to my neck and cheek and can last for a few days. If you don't mind can I ask what your symptoms are and how have you controlled it? I've been taking cocodamol and going to bed but that doesn't always work.

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Hi Gefm, I need to say firstly that I'm still not diagnosed (off to CoE next week)....But I have definately found that all the symptoms I have that could be Behcets often seem to revolve around my period. I actually had a coil fitted a year ago and have seen a reduction in some of my symptoms, mainly the ulcers. The lesions on my legs are very sporadic and dont seem to have any pattern, but the headaches and pains in my eye always flare at that time. I would deffinately say that if what I have is Behcets then my period is almost certianly a trigger. ...I should also say that i think I have read that certain contraceptives are maybe not a good idea for Behcets sufferers so if I'm diagnosed I'm half expecting them to say I should have the coil removed (not really something I wanted in the first place anyway but periods were'nt much fun so my doctor suggested it).

Hope that helps. x

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Thank you that is really helpful, my eyes also get worse, they have a really deep ache and they found I had retinal vasculitis but then they said it doesn't normally cause symptoms which is why a lot of people end up losing some vision. So I said well what's the pain then and the eye doctor said "I don't know, ring your rheumatologist" which I thought was ridiculous because he was the eye specialist. I'm really bad around my periods, I am on the oral contraceptive but I've been told I will need to come off it so this will make things worse as I normally skip months so I don't have to get the flares as bad x

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I'm just learning about Uvietis from one of your other replies. I think that could be what causes my eye pain. I would also discribe it as a deep ache it seems to start at the back of my eyelids but then sometimes migrates around my head and into my neck. It's not much fun. Hope you can find out what it is and find a treatment... I'm hoping too as life would be a lot easier without the eye pain!

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I know tell me about it, they ache so deep and when I move my eyes it's almost like the muscles that move my eyes are hurting. They thought my eyes was posterior uveitis but I had dye put in and they found out it was retinal vasculitis, they are both different but I'm not sure how lol its awful I have horrible wiggly lines in my peripheral vision as well and no one seems to be bothered I've rang the eye person and the rheumatologist and no one seems to care which is awful because they're my eyes x

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That's not good. Have they suggested any pain medication? Have you been able to find anything online about treatment? I wish you luck in finding some help. x

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Omg! Yes Hun definitely ! About a week before and lasts til about a week after ! The aching, headaches, my hearing is affected, the tiredness is overwhelming ! I feel like every month I'm coming down with the flu ! Xx

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Thanks Dinkyjojo7,  are you on any contraception, I was just wondering if anything  made it a bit more tolerable, I'm ill every month like having the flu just like you said x

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Defiantly was the worst part of the month. I would start on day 14 and go down hill until after my period. The ulcers everywhere were terrible not to mention all of the above problems. I was lucky not to have eye problems but the ringing in my ear nearly drove me crazy. Colchicine has helped and a hysterectomy. I don't suffer as much with ulcers down below now. I had endo and polycystic ovaries or was it all just ulcers. Who will know but my uterus was just under three times the normal size and connected to the bowel and right leg ligaments.

My daughter also has BD and is suffering badly at the moment as I think she is getting close to cycling. I feel so sad for her, it's all just so painful for her. I do hope her reproductive area doesn't give her as much grief as mine has during my life. At the age of 44 and no uterus, I'm so happy to have it out. I couldn't tolerate IUD's or the pill.

All the best.

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