Hi there! I am 37 years old and have had VWD for almost as long as I can remember (inherited from my mother). I have been typed both I and II at different times of my life… every doc says something different. Currently I am being treated as a type I. My husband and I are looking for a Fertility Doc in Texas, one that specifically has experience with VWD patients. Does anyone out there have any recommendations? My Ob/Gyn thinks that this type of doc is the best route for me to go when we start trying again. I was hoping to find a way to narrow the list, short of calling all Fertility Doc offices in Texas that take my insurance :-/ I thought I would put this question out there and see who might be able to help guide us. Thank you in advance!
hi there! i’ve had a similar experience to you, but I’m in massachusetts. do you mind me asking – are you looking for an OBGYN who knows about VWD, or a fertility specialist to help you get pregnant? I did IVF to conceive my almost 1 year old daughter, so I have experience with fertility specialists as well as a high-risk OBGYN, who my regular OB referred me to so I was monitored more closely than the average woman would be during pregnancy.
I used Dr. Walid Saleh with SIRM at Medical City Dallas. I don’t know if you will find a doctor who specifically knows how to deal with VWD, as in my experience most doctors know what it is but leave it to your hematologist to treat. What you should know when you are undergoing IVF with VWD is that some of the IVF drug protocols include aspirin and heparin (to increase blood flow to the growing embryo to increase the chances for implantation). Your protocol will depend on what your IVF doctor determines is your “infertility problem.” It could be low hormone levels, low sperm counts, low egg reserve counts, something physical with the uterus, an immune response issue, or something unknown. With VWD you can’t take aspirin or heparin. Also, when undergoing egg retrieval, you undergo anesthesia. Make sure the doctor you select has an anesthesiologist that is familiar with treating VWD because they are actually the ones that will administer the clotting agents if something goes wrong during the retrieval.
There are some things you should be prepared for that I found in my experience and I wish I had known to be prepared for in going through IVF. First, some of the tests and procedures can cause bleeding. Egg retrieval, embryo implantation, and physical tests for exploratory examination of the uterus, tubes, and ovaries can cause bleeding. This is common even for women without VWD, so medical personnel tend to dismiss it as normal. However, the amount of bleeding may be much more significant and ongoing, so speak up if you feel you are bleeding an alarming amount. Secondly, all the injections you have to take can cause significant bruising on your abdomen and buttocks for VWD patients. Thirdly, just so you know, once you become pregnant the IVF doctor will turn you over to your ONGYN and won’t be there to hold your hand during the whole pregnancy. Finally, and I don’t mean this to scare you but I think you should be prepared, IVF usually takes several attempts before it “works” (if it works at all). You will hear a lot about all the success stories but not about the failures and losses, which far outweigh the successes. Keep in mind that most women using an IVF doctor are there because they are having problems getting pregnant. IVF isn’t a quick fix for the vast majority of patients. Having said that, there is an increased chance for you to have a miscarriage of the implanted embryo. With miscarriage, comes a lot of bleeding. For a VWD patient that can be a very significant blood loss. Again, speak up if you feel it is not normal because OBGYNs are so used to dealing with miscarriages and women freaking out about the increased bleeding involved with a miscarriage that they tend to under-react to someone with VWD (that’s what my hematologist told me after I was bleeding for over 4 months straight following a miscarriage). Not related to VWD but, also, important to know is the amount of stress IVF causes on the body and your relationship with your partner. There is so much self-inflicted pressure on you to conceive and money involved that it can be overwhelming and it may seem like everyone around you is getting pregnant at the same time. No one can prepare you for this, it’s just something you have to go through. You will need your partner to be strong for you.
I hope I didn’t scare you off IVF but I believe in being prepared and armed with information to make important decisions. I joined this group because there was no one or no where I could find information when I was going through this. I wish you luck and hope your IVF is successful.
I’d love to have an ObGyn who has VWD experience, but I have not found that where I live. My ObGyn uses a high risk OB who does have some experience with VWD, but until I get PG I can’t really work with her. Our goal is to get pregnant, but I need to find a new doc before we try again. I had lots of excessive bleeding this last time and we need to find more specialized care for me.
Where are you in Texas? If you are in DFW, Walnut Hill OBGYN has a great group of doctors, all of which are familiar with treating patients with VWD. They have their own offices but have admitting rights to Presbyterian Dallas and their labor and delivery wing. Whatever OBGYN you use is still going to just follow whatever your hematologist recommends. I feel it’s more important to have a good hematologist who will advocate for you with whatever kind of doctor you need.
Yes, it sounds like you need a good hematologist in addition to seeing a fertility specialist and you’ll be well on your way. It’s definitely important to have fertility doc and hematologist that you trust and know will work together, i think you’ll have a really hard time finding an OB or specialist that knows anything useful about VWD, most Drs defer to the patient’s hematologist. In my experience, specialists are much more used to working as a care team with other doctors. The OB I saw once I was pregnant had some experience with VWD because she’s high-risk, but there are so many different types of VWD, it’s definitely more important/helpful to have a good hematologist. And I was referred to the fertility specialist because my regular OB couldn’t handle my case, which sounds kind of similar to your situation? My fertility specialist and OB ended up just doing what my hematologist recommended, but again, I think that had a lot to do with the fact that they regularly deal with more complicated cases and are used to working with doctors from other disciplines.
I dont want to get ahead of you, because from your post it sounds like you dont even know if you need IVF yet, but I just want to add that my experience with fertility treatment, pregnancy, labor and delivery was really easy and not scary at all because I liked and trusted my doctors. We did get lucky and conceived on the first round of IVF. It’s not an easy process, although trying to get pregnant for a long time was much harder, IMO. With fertility treatments, I felt like at least i was finally doing something that might work, it was a really positive experience for my husband and I. And i did a LOT of work to de-stress – yoga, acupuncture, meditation, visualization and hypnobirthing – which i think was really helpful even before we started IVF treatments. But my fertility specialist said that my VWD wasn’t an issue with me conceiving. I actually have PCOS, which tons and tons of women have and they don’t know it. It causes excessive bleeding and makes it harder to get pregnant.
so anyway, i think you’re on the right track in looking for a good fertility specialist, but you also need a really good hematologist, for this and for the rest of your life.
Good luck and baby dust to you!!
I’m in Waco, but we do not have any fertility docs here (that I am aware of, or at least that my ObGyn recommends). They are all at Baylor Scott and White in Temple, which is where I have been seen before. With that Doc I did a round of Clomid but it really messed me up and caused massive bleeding episodes that my Hematologist (who is in Waco) does not want me to take again. The last round of bleeding caused me to get an daily round of DDAVP, which is not preferred. Luckily my levels have all returned to my normal now. Last time I saw the fertility doc he asked if I had considered looking into a surrogate. He has never suggested IVF. Honestly, my husband and I do not have a fertility issues - we both came back normal - all the excessive bleeding I have experienced has made the process difficult, which is why I was hoping to find a Fertility doc that has at least some experience with VWD. I am willing to travel most anywhere in Texas for the right doc.
Were you over-stimulated or were you on the lowest prescribed dose of Clomid? A lot of fertility docs overstimulate patients because they know that a lot of patients can’t afford the costs of multiple rounds of treatment, so they dose them pretty high to try to get as many eggs as they can in the first round. Also, they don’t know how you may react at certain doses and it may take several rounds for them to figure out what doses are good for you. Unfortunately, that means you are out a lot of money (unless your insurance covers it) while they are playing a guessing game.
The other thing that is common in the IVF industry is that the clinics depend on their success rate numbers to draw in more patients. Many clinics, if they think you are going to have a difficult time getting a patient pregnant, will not accept you as a patient or steer you towards egg donors and surrogates because they don’t want you affecting the bottom line of their success statistics.
I was on the 50mg Clomiphene Citrate. Only took it for 5 days at a time.