Horrible periods

[Niki318]

Hello all!

My periods as of lately have been pretty extreme and making my Behçet’s really flare. This has become a pattern for me! I will do well on my immunosuppressants and then as soon as I get my monthly period my Behçet’s flares! I got muscle and joint pain, headache, pretty bad abdominal pain. Today I have heavy bleeding and pretty bad cramps. Doctors are afraid to put me on hormonal birth control as certain hormones can make Behçet’s flare apparently and my blood pressure is finally under control and normal. Does anyone else go through this or have any advice? It debilitates me for an entire week and it’s so frustrating.

[ashnee]

Hi I've been diagnosed with behchet since February this year I'm only on methotrixate & folic acid as per my Physician and I take my usual multi vitamins. I also suffer from heavy periods due to my endometriosis but recently I've notice I've been terrible sores in & around the vulva & the itch is horrible. I'm seeing a gynae soon. Thanks

[Frogge]

I had this issue and it became so severe that I had a hysterectomy when I was 31. Luckily I had 3 great kids by then and even though I wanted another one, I was worried about the behcets, so I took the leap and had the hysterectomy but left my ovaries in. It made a world of difference for me with being able to get along and work and take care of my family month to month. It was so bad that I bled very heavily for two or more weeks a month and could hardly leave the house without bleeding through anything in an hour. I had to wear super tampons and pads and still only made it about an hour. Pads irritated my skin and I got sores from that which never went away. If you are done having kids, I would definitely go that route. My ob/gyn suggested it after the diagnosis of behcets. I am in Utah in the USA.

[Jhar16485]

Hi

Its well known that bd can be triggered by hormone fluctuations. I went through same as you. Every month 2 flares one during ovulation and then when period started for approx 14 years . Extremely heavy periods had to stay in bed 1st 2 days every month. Unfortunately I was unable to have hysterectomy due to bd complications of positive pathergy which meant I wouldn't heal. However I did take tranexamic acid which helped control pain and blood flow. Since menopause 3 years ago the symptoms are not so severe however I still flare due to hormone fluctuations and get cervical ulcers as well as other symptoms of bd. All I can say is keep going to your specialist or gp if you don't have one and explain how its affecting your ability to live. There will be help if you keep at them. I had to give up working but many people manage. I hope you get help you need soon. You are not alone with this.

[SCMW]

Hi, you might want to consider the mirena IUS. Also make sure you have no clotting issues. We’ve found a tendency towards connective tissue disease in the family and found all the women have had unexplained heavy periods. We’ve found a relationship to vitamin K deficiency which your body needs to clot. Best wishes

[Elamee]

I am 48 and have many of the same symptoms. Finally decided to have partial hysterectomy (keep ovaries). This was after trying everything else—IUD, medication, ablation, diet, etc. The BD and endometriosis inside and outside (I know there is another name) along side extreme bleeding were making my life miserable. It is a little over 3 months and I feel amazing, better than I have in years. Flares are minimal. Way more energy. Working on some extra weight. Grateful and wishing I would have considered it sooner.