101 Women with VWD and HMB prefer proactive support from providers for treatment of HMB “I think it is very important that a gynecologist or a GP takes into account the possibility of a blood clotting disorder when a woman has very heavy periods. That does not mean that every woman with HMB has VWD but it should be ruled out, as I think. That could prevent a lot of misery.” There is often considerable delay before the correct diagnosis is made: “Because of frequently recurring HMB I went regularly to my GP. I went to him very often. I tried the contraceptive pill, I tried the Ln-IUD, but really nothing helped, I felt hopeless. My GP told me there was no help for it. Finally, I was referred to the gynecologist. She listened to my story and immediately thought of VWD or another blood clotting disorder.” Support for surgical intervention Often, a GP or gynaecologist advised a hysterectomy because of the HMB. Frequently bleeding complications occurred during surgery. The diagnosis of VWD was made after surgery in most women. Nevertheless, a great relief was reported after hysterectomy resolving the problem of HMB: “Well, since the hysterectomy I feel 200% better. It helped tremendously! I mean, such a burden did fall away, also for my family members.” One woman had EA. She was referred by her GP to a gynaecologist because of HMB. The EA was performed as an outpatient procedure, without any complications. The gynaecologist knew she had VWD disease; pretreatment was not necessarily due to the type of surgery. Three years after EA, she is still pleased and did not have any menstrual bleeding since (Figure 2). The woman who could only contribute her story by telephone told that she had heard of the EA in a television program. Although her GP did not know this method of surgery, he referred her to a gynaecologist. Informed choice for surgical intervention, complications and results Because of the burden of HMB, patients had to accept the risk of short- or long-t erm complications of a hysterectomy: “Once again I was rushed to the hospital by ambulance. The doctors said sooner or later the period would be so severe I might die. The message that I would require hysterectomy was devastating. Yeah well, I was 31, what would you do, it was a very difficult decision. So, I tried a Ln-IUD, which was not the solution. The heavy bleeding went on every month, and then eventually the doctors said we are going to perform a hysterectomy.” In some cases, the surgery that was meant to relieve HMB was complicated by bleeding problems. Despite medication, complications arose. Therefore, re intervention was required or prolonged stay in hospital needed: “I was about 33… After yet another curettage, the gynecologist decided to perform a hysterectomy. During this operation, a major abdominal bleeding occurred, my belly was so swollen it looked like I was heavily pregnant” 6
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