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Behçet's UK
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Behçet's while pregnant

Does anyone know what it is like to have this disease and being/getting pregnant?? Risks?

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Yes I do and a friend of mine. I had my second child at the very onset of the disease although we didn't know what was wrong with me. I had a great pregnancy and had my second Caesarian section. I was also very well the first year whilst I was breast feeding. About 6 months later I started to get ill and more symptoms. After 6 years of ulcers everywhere, extreme fatigue, aches and pains with a few weeks in between bouts of relative normality, back then nobody had any idea why I was so ill. After 5+years I fell pregnant again aged 42 years, I had no idea until I was about 5 months. I thought the nausea and tiredness were the illnes and that I might be menopausal. Again after 6 months pregnant I began to feel better, I had my last C section and because I felt so much better breastfed for 20 months. Then the illness became worse than ever and after another 4/5years I was finally diagnosed and began treatments and meds etc. My children are all grown , fit and healthy and living their own lives. A few years ago a young woman on this site asked the same questions as you and I told her my story. Eventually a couple years later she had a baby with a similar experience as my own. There is also some evidence that women with MS have remission when pregnant and feeding.

Obviously we are all different and react differently in certain circumstances. I wasn't on any medications except gels, mouthwashes and pain killers as all my tests came back negative all those years back (over 30 years) and behcets wasn't heard of here in the U.K. I suggest you talk with your doctors with regards to this and then make our decision. I do hope this helps and wish you well in your decision.

Hugs

Billi

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Thank you billi! That does help calm my nerves a little. I've been stressing that I cannot have anymore kids bc of this disease. I will defiantly talk with my docs at my up coming appt this week! Thank you again for reassuring me.

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I just had my first baby 11 weeks ago. I was diagnosed about six years ago. I will say, I felt better pregnant than I have felt in years. I have read that many women have major flares after delivery, but so far I am doing alright without medication. I am breastfeeding, and my lactation specialist believes it helps reduce inflammation. The little guy is a great sleeper, so that helps too. 😊

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I have also heard that there is a slight increase in the chance of miscarriage. I did have an early miscarriage, but was able to get pregnant again about a month and a half later. Now I have a healthy baby boy!

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I've been told by the Behcets centre that the illness actually goes into remission for the duration of the pregnancy. However, having spoken to lots of ladies with Behcets that have had babies once they've delivered the baby the symptoms come back with a vengeance.

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ive been diagnosed with behçets since my 20s. I have been pregnant 8 times since diagnosis but lost my baby each time at around 12-13 weeks - usually within 4 weeks of my 9 week scan. Having had full gynae checks/exploration and having found nothing wrong with my fertility system, the only explanation the consultant could offer was that my immune system was so hyperactive that my babies were seen as foreign bodies and thus rejected each time. In the end I stopped trying as it got more heartbreaking with each lost baby. The only advice I can offer is rest as much as possible and don't worry. Every body is different and there's every chance you will have a healthy baby. Good luck.

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Thank you all for your replies! I truly appreciate it. I'm so sorry to hear of all your miscarriages dr-cja!

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Hi Arcmacjac, I don't know of any real studies done on Behcet's patients and pregnancy. I can tell you about my own experience. I have never heard of anyone having difficulty getting pregnant due to Behçet's. I had my first Behçet's symptom at age 18 with a mouth and throat full of ulcers. I was so ill, fever, joint pain. I continued having these symptoms and more. I was under the care of a rheumatologist but had a list of diagnoses before getting the correct one of Behçet's.

My first pregnancy was at age 22. I had a normal pregnancy with a halt in oral or genital ulcers. That was the first time in 4 yrs without ulcers. I did have to get a steroid injection in my knee, other than that I felt great. My firstborn, my son, was such a large baby that my labor was induced a week early. My labor was normal, however it was a good thing that I was. He took a lot of work to get delivered! He was

9 lbs, 14 oz and 21 inches long . He was very healthy, he did have allergies and throat/ear infections. He will be 38 in June. Still has allergies but healthy otherwise.

I did have a very early miscarriage at 24. I was about 8 weeks along. Not unusual for any woman. My second pregnancy I was 29. I just turned 30, three weeks before her birth. I felt great during my pregnancy with my daughter. Again, my ulcers disappeared . I also had bursitis in my shoulder during pregnancy which my joint issues more than likely had to do with weight gain and body changes. Local injection of cortisone and I was fine. The only difference in this pregnancy was that I had a recurrence of abnormal cells on my pap smear. I had had surgery on my cervix 4 yrs prior where they removed a cone shaped part of my cervix to remove the bad cells. So, I had to have 3 culposcopies and biopsies of my cervix done during my pregnancy. Thinking back on it, had I not been pregnant during those procedures, I more than likely would have developed genital ulcers. I made it through the pregnancy fine. But then her due date came and went for 10 days. So, again, I was induced with pitocin I.V. drip .She was easy to deliver, especially after my big boy. She almost flew out! Hahaha . She weighed in at

6lbs, 13oz and 18 inches long. Very different pregnancies but I did well. I breastfed for several months.

After I healed, I had a hysterectomy due to cervical cancer. Due to being only 30, my ovaries were left.

I have read some journal articles and spoken with both drs and researchers. There is some indication that for women, at least, that hormones may play a part in Behçet's. Most females are of childbearing age when they are seen for BD symptoms. I personally feel it seems to be a factor. I know a lot of women who have had healthy pregnancies, deliveries and most of all healthy babies/children.

Breathe.....of course some will have very different stories and outcomes. But it seems pretty much like the general public. I was not on any regular meds when I became pregnant. Wishing you well!

Cindy

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It's a very interesting question for me! I'm 31, trying to get pregnant since one year without any success. I went to see a gynecologist, he did several tests and he told me that everything was fine. I don't take any medication at the moment, I'm not in a flare but i notice that each cycle, I always have some ulcers the week before my period coming + chills. So I began to wonder if the hormones changing were related to certain symptoms of BD. I'm afraid this keep me from getting pregnant, cause it's the same pattern every cycle, always on the same week, which is the week after ovulation.

I am glad to see examples of women with BD who have had a full pregnancy, this gives me some hope! But I'm wondering if someone has already been in my situation cause there is not a lot of documentation about BD and pregnancy.

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Have you tried any herbs to help you concieve? I was taking Maca when I got pregnant with my last one. I wasn't trying to concieve, but I got pregnant almost immediately after I started taking it. I have heard stories of other people getting pregnant very easily on it.

You could also try Vitex...I take that too for hormone balance. I have heard a lot of people get pregnant after taking it also although I heard you have to take it for at least 3 months before it really takes effect.

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Yes, i heard about it, I will give it a try :)

Thanks Barbara

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Hi I had my first Behcet's symptoms when I was 14 that was 41 years ago. I have had 4 children all healthy with my only symptom whilst pregnant being that I did not sleep well probably 2 hours a night from when I conceived. Never found out what caused this, they put it down to hormones, but my Behcet's symptoms ulcers etc stopped and I felt really well. As soon as our children were born I slept brilliantly which was a blessing, no problems with labour mine were all very short between 1 - 4 hours. My babies also were very different in weight ranging from 6lbs 12oz to 10lbs 11/2 oz. The only thing with me was I had an early menopause at 39 which lasted for about 5 years on and off. I had my last child at 36 but from my first child at 25 I always had very intermittent periods never monthly which got less and less as the years went by. At 39 they had stopped completely with maybe 1 every 18 months to 2 years which I had checked out and nothing was found. I would not worry, when you are pregnant sleep when you can eat good natural products and enjoy. I hope this helps but as Billi said when we started having symptoms nobody had a clue what was going on and it has only been in the last 6 years that I got a diagnosis and they put a name to what I had. All the best xx

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I have had 3 children. The last one 2 years ago @ two months shy of 44. I had no BD issues when pregnant. They have come back since.

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Hi I have had BD since 1994 when I was 24, I had no issues whilst being pregnant, infact, it was the best I had felt in many years. I suffered 2ectopic pregnancies one before and one after my beautiful daughter was born,natural birth, no pain relief and really short! She was born in 11 minutes!! we had to take Clomid to conceive her. The BD eased off for several years after she was born, but, symptoms raised themselves again now. Xxx

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I had BD symptoms from the age of 17. My first attempt at falling pregnant was age 27 and had an early miscarriage at 9 weeks. Went on Clomid at 28, which made me incredibly ill and I lost huge amounts of weight. Tried natural remedies and my husband went on them too. We fell pregnant only to have a miscarriage at 11 weeks. Had a 3 month break to get my body well again ant then fell pregnant. I felt amazing for the whole of the pregnancy and that's when I knew I really had something wrong with me. After I had my daughter 2.5 weeks early but very healthy I became unwell again. Now 30 years old started trying when she was 6 months old and fell pregnant after only 6 months, perfect. Again I felt wonderful but at 30 weeks my liver wasn't working properly and after heaps of injections he was born 6.5 weeks early small but well. I again became unwell soon after. I'm now 44 years old and myself, my daughter 14 and my son 13 yesterday and all have BD, annoying but there are far worse things to have. At least we have medicines to help, unlike some different and horrendous conditions.

Good Luck. I have read a few interesting things about BD and pregnancy.

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