Behçet's UK
4,124 members3,520 posts


Hi all, I'm an American who's been lurking here since my BD flared up again over a year ago after a nice long time in remission.

I'd been diagnosed as a kid so I just needed someone to help me manage things. The past year has been several months of Prednisone, several failed drugs, Imuran keeping things tolerable but NOT good, all while I visited my rheumatologist and several other doctors trying to sort things out.

Finally I put myself on the autoimmune protocol diet, which helped immensely. This book was at my public library and helped me make sense of the lifestyle changes that can help manage inflammation.

After that success I just kept Googling until I found a functional medicine practitioner who's covered by my insurance. She took me off hormonal BC. I tried Nuva Ring, but that made genital symptoms worse—but after stopping everything, all my symptoms were nearly gone within a week.

Once my hormones have had a few months to balance I will try going off Imuran, as it seems it works better to support my body with supplements and lifestyle than to hamper it with drugs!

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YAS YAS YAS- omg- shut up. So also american here, baltimore md, 29 F- I JUST STOPPED MY BIRTH CONTROL TWO WEEKS AGO-

I have subsided most, if not all, my symptoms using a low carb- nutrient rich, diet. Meat fat and all the veggies (except beets and carrots as i have become sucrose intolerant since 17/18 aka when BD started, AKA WHEN I STARTED BIRTH CONTROL) its similar IMO to AIP with a few tweaks. im on Instagram under @bitterbiolgist- stalk me ya'll- its JUST FOOD.

I have a plan to stop colcrys come next year, i wanted to make sure that I could control my flares and prevent effectively through diet and quality sleep (if i dont sleep well- i will flare). So far, this past year- i had 3 flares, 1 due to stress (was very minor IMO) and was managed really well by upping the salmon and green veggies in my diet for the week- also by getting plenty of sleep. And then 2 pretty good flares due to accidental sucrose intake (ulcers immediately, then the joints and fatigue come etc etc). Ive become so effing sensitive to foods and my environment. Its sucky but also kind of neat to be so receptive( more on this later).

anyhoo- so with this new awesome plan of stopping colcrys next year, I had wanted to stop my birth control as well. Im about to be 30, my sex drive really isnt there any more and theres no excuse why it shouldnt be. I actually LIKE and find my partner(13 years) super hot-we both work out, we both eat well; im not fatigued like i used to be. I feel I missed out on a lot of my 20's due to being chronically fatigued and not diagnosed for almost 10 years. I honestly feel like ive just gotten my life back the past year or so- or rather that im actually living the shit out of it now. I ve never felt this good ever before in my life- so again- why no tingly bits (remembering back to early teenage years lol)

so i got all hyped about being 100% medication free (used to be on 15 at one point). I researched the effects of coming off birth control. mind you I never had problems with my lady cycle, i was super regular and normal with it. I got on BC for acne and sex reasons at 17. I got on BC one week after dating my current partner now, so he's been a very consistent factor JUST SAYING.

two things i found out with stopping birth control and its effects in general-

1. there is a small group of women who become CARBOHYDRATE INTOLERANT- SHUT THE FRONT DOOR. are you shitting me? Am i in this little group? Here I am, researching every factor from fucking sunday, wondering if my autoimmune disease exasperated a sucrose intolerance... and here birth control is in the background, silent factor. IM SO DUMB. google it for yourself- its on government research articles. pub med, ncbi etc

2. you can ovulate with the moon. DOPE. as the astrological sign of cancer (hi- i cry a lot and feel everything) this stokes the fuck out of me, being that the moon is my planet sign or whatever. Excited AF to dance naked under it.

I will post more with the stopping of birth control. IM SO GLAD YOU MENTIONED THIS. xoxo


Interesting! My partner and I broke up around my diagnosis (very supportive of him) but I’ve stayed on the pill to 1) not have my period and 2) give my body some stability.

Now that it’s been a year and the shock is lessening I have been considering going off of it. Look forward to hearing how you find it., and whether you notice long term healing. Would be so lame to get a period again though haha. Have loved that side effect!

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P.S. which book did you use? The link isn’t working for me right now. Thanks!

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Thanks!! Amazon is so dangerous. Just bought your recommendation along with “The Healing Kitchen”! I’m a stubborn lover of food and drink so fingers crossed I can managewoth some help!


I've also tried the pill and Nuvaring. I've gotten violently ill and passed out with both. I now have had years with Mirena IUD and no problems as it's a very mild hormone that only circulates in your uterus. It also stops or majorly lessens periods along with birth control. Anyway, interesting that so many of us have hormone intolerances. Before I was diagnosed (7 years ago), I always knew whatever I had was related to hormones, circulation, and food sensitivities. I still have major issues with nuts, seeds, berries, anything from a shell/seed, and I also get sick monthly when my cycle causes a change in hormones. But at least colchicine helps my canker sores! Still working on skin rashes tho....

Honestly, the food problems freak me out as it's just overwhelming with what I should and should not eat. I know so many healthy things give me sores, but if I cut out everything books say I shouldn't eat, there would be nothing left... ugh!

Anyway, best of luck to all! :)


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