Trying to get pregnant with VWD

My wife is 36, diagnosed with VWD at an early age (11 or 12) and has been on birth control since puberty to control her bleeding. After getting married last year, she has discontinued her birth control and is now dealing with a very irregular menstrual pattern that she has no reference point to compare to. Recently she has had a period that starts normally enough, suddenly stops, then proceeds to heavy bleeding with large clots and lots of cramping. She had an ultrasound a couple weeks ago that appeared normal and the tech confirmed that she had ovulated, so as far as we know she is still able to have children. I guess the issue she’s having is that she does not know what to expect and if an irregular menstrual cycle is to be expected with her VWD? Her OBGYN office is not very prompt in returning her calls about her concerns, so I thought I’d try to post a question about this. Thanks.

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First, some good news. VWD is mostly a genetic disorder, so a LOT of women out there with VWD are having children and passing it on to their children. As explained to me by every fertility specialist I’ve been to and my hematologist, VWD doesn’t interfere with pregnancy. The problem with VWD and pregnancy lies with potentially life threatening bleeding after the birthing process. A woman’s VWD factor actually INCREASES during pregnancy. Assuming there is no physical problem with her reproductive parts, irregular periods are a symptom of hormonal problems which could be due to the fact that she has come off the pill and her natural hormones haven’t regulated yet or simply due to her age (she could be in early menopause). Giving her age and the fact that you have been trying for a year, I would advise you go to a fertility specialist. Most recommend you go after trying for 6 months for women of her age. They can do a blood test which will tell you how many eggs she has left (i.e. How close she is to menopause). Also, they will measure hormone levels and give you injections to correct any issues. Plus, they will physically measure her lining and look at her ovaries. It’s WAY more comprehensive than anything an OBGYN does. If you do choose to do IVF or IUI, she may not need to come off birth control and deal with the bleeding. Clinics use birth control pills to time a patient’s cycle, so they know exactly what time to do the egg retrivial and embryo implant down to a window of a few hours for optimal success. When it comes to pregnancy, time is not your friend, so I would recommend you find an OBGYN doctor or IVF clinic ASAP who is willing to work with you and will address you concerns. Good Luck!

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Thank you for your response VWDgirl. A lot of great information. My wife and I actually have an appointment set for this month to see a fertility specialist so hopefully we’ll get some good info on that visit as well and see what some of our options are. Thanks again :slight_smile:

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Hi All, Thank you to my husband (rchapa314) for getting this conversation started. I thought I’d give everyone an update on status. We met with and have been seeing the fertility doc - he has said that basically we do not have a fertility issue. I am ovulating and my husband has good counts. We tried Clomid for two months in a row. I had been having low progesterone and Clomid really helped me - overall I felt sooo much better than had been (I apparently had been feeling the side effects of low progesterone for so long that I’d noticed how bad I was feeling). The only negative I experience from taking Clomid was bleeding - so much bleeding. Two days after my second dose of taking the drug for 5 days, I started hemorrhaging (this was two days after my period has ended). After two days of non-stop bleeding (that kept me of working and standing for long periods of time) I of course began to feel fatigued and went straight to the Hematologist (in hindsight I should have gone so much sooner) - where blood work confirmed below normal levels of RBC, WBC, Hemoglobin and Hematocrit (which to-date 2 months later are still recovering back to normal). I ended up having to have a daily round of DDAVP through infusion - the nasal spray does not work on me. The bleeding lasted 6 days. We worked with the Fertility doc and the Hematologist to try and find out the cause, with no real answers behind the bleeding - the impression we get is that the Clomid “may” have contributed to it, but legally they will not say. I mention all this for my fellow VWB ladies out there to consider…you never know how a medication will effect your body :-/ To be honest, the Doc’s not having answers has truly been the hardest part of this journey.
Anyway, our pathway to pregnancy continues, but due to the bleeding risk with Clomid we have moved back to unmedicated. Since we have gone back to unmedicated, my periods have returned to there long heavy and unpredictable ways, but I am continuing to ovulate - which is good news - but I have returned to more unusual pre- and/or post-period bleeding that no one can explain. With negative pregnancy tests, this leads me to believe that they are not early term miscarriages, but who knows. We are still optimistic and hope that through any crazy bleeding, a fertilized egg can power through!
My post is more informational and abbreviated, because this has been a long long road. I’d love any advice any one might have.

Thanks,
~A