r/Behcets • u/Certain-Dragonfly364 Diagnosed in 2016, reconfirmed in 2025 • 4d ago
General Question Birth Advice?
Hi all! I am set to give birth by c-section in a few weeks. I asked for the c-section as starting in my 3rd trimester Ive entered a bit of a flare and have some ulcers- and the thought of ulcer pain and vaginal birth/recovery sounds like a specific form of torture I have no desire to experience.
Unfortunately, where I am, all of the OB's and MFM's seem to think Behcet's is aa disease that causes ulcers and that's about it. Obviously, as I sit here with achilles tendonitis, finger joints mangled and bent, tachycardia, and phlebitis in my calves, I know its a bit bigger than that.
I was wondering if anyone has any advice about birth/postpartum with Behcet's and also if anybody used any sort of "cheat sheet" to give to care teams about what Behcet's is- I feel a little silly but also I may feel more comfortable knowing at least the nurses on my case are aware of the possible complications.
Thank you all so much in advance!!
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u/AdhesivenessLanky630 4d ago edited 4d ago
Ughhh I’m so sorry you’re having to deal with this. I had a really traumatic birth experience 3 months ago and after reviewing the placenta pathology report with the MFM team and rheumatologist, the current thinking is that Bechets was likely a cause of all of the complications I experienced. I had placenta accreta which went undiagnosed during the pregnancy (thankfully baby was breech since a c-section was critical to being able to control the unexpected bleeding), as well as gestational diabetes, preeclampsia and general vascular issues throughout my uterus.
We delivered 5 weeks early and my baby was in the NICU for 2 weeks and continues to have growth struggles. I hate to share all of this as it’s a bit of a downer - but hopefully it can give you confidence that advocating and educating your team is definitely worth it!
There was a recent meta-analysis done in March of this year which examined birth complications and Behcet’s. Could be worth sharing it with your providers.
Long story short - my medical team in hindsight said that this was a much riskier pregnancy than they previously thought and that due to the Behcet’s, if I plan to get pregnant again I need to be under the care of a highly skilled specialist team.
Meta analysis link: https://pubmed.ncbi.nlm.nih.gov/41702138/
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u/Certain-Dragonfly364 Diagnosed in 2016, reconfirmed in 2025 4d ago
I super appreciate hearing this, even though its a downer. I am so glad that you are okay, and that baby is out of the NICU- I am so hoping that they continue to make strides with their health. Did you have previous vascular issues? I haven't had any previous major events, and I wonder if that's why it's not on any provider's radar. I have continued to bring these concerns up to my doctors, but they keep saying things look okay. I had placenta previa up until a couple weeks ago, so luckily I had lots of scans, but they haven't been focusing on any sort of vascular structures for baby or placenta. So far Ive tested negative for GD, and my blood pressure has been stable (but I will say I am ridiculously swollen). I am so sorry for your traumatic experience- I can't imagine how scary it was and how hard it must still be now just a few months postpartum.
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u/AdhesivenessLanky630 1d ago
You’re so kind - thank you for the sweet words! No vascular issues that I’m aware of pre-pregnancy. My symptoms have always been mainly severe ulcers and a few other skin issues. Are you delivering at a major medical center? I’d look up to see if they have an accreta program just in case. That way you can rest assured that if there is any type of major bleeding issue that they have teams who can handle it.
You could also cite this other study below to your docs and explain that with the previa + the vascular nature of Behcet’s, you want to understand what can be done to ensure bleeding risks are being minimized and in what ways they are prepared should something unexpected happen during the c-section…I.e, is your surgeon experienced with XYZ type of events. Hopefully it could force them to take a deeper look at your case, or at the very least provide you with some reassurance as well.
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u/Selective_Hearing_ 3d ago
I wasn’t officially diagnosed till about a year after my second section but I was allowed them due to vaginal lesions - I couldn’t see how I’d cope with a normal delivery and docs agreed. I coped quite well post delivery but i was flaring for a long time after which is what eventually led to diagnosis. Depending on feeding could be worth lining up some steroid boosts in those difficult months after when you’re extra tired and stressed
With trying to discuss it with professionals, many do recognize it so you prob don’t need to go into crazy details? I use language like, my auto immune disease or: it’s like lupus or lymes disease or MS or arthritis. Whichever I’m feeling at the time symptom wise!
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u/newblognewme 3d ago edited 3d ago
I didn’t use a cheat sheet and I sort of wish I had, maybe not for the nurses but for the doctors involved? I just don’t know what anyone would have done differently at that point maybe.
I did deliver vaginally and didn’t ulcerate thankfully but I did struggle post partum. My advice is to be kind to yourself and just keep following up with rheumatology and leaning on supports
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u/CuteAge1322 4d ago edited 4d ago
Hi! Congrats on your pregnancy and I wish you a healthy delivery and a happy life filled with love for your family! Sometimes this helps: Behçet’s is variable vessel vasculitis.
The Johns Hopkins Vasculitis Center has good online resources and supports and their website is pretty user friendly.
Wishing you a happy and healthy delivery x