Although there is some good information on the internet, there is also a lot of information that does not apply to young women with bleeding problems, is incorrect, or might not be relevant to your situation. It can often be hard to separate the good information from the not so good. It is important to talk to your haemophilia nurse or doctor at your Haemophilia Treatment Centre. They will be able to talk with you about your individual situation, tell you where to get the most up to date and accurate information and discuss the best treatment options for you.
Sometimes heavy periods can be a sign of a gynaecological (women’s health) disorder. This may not be related to the bleeding disorder, but the bleeding disorder might make the heavy periods worse. With diagnosis and appropriate treatment, these bleeding problems can usually be reduced or managed. It is important that your gynaecological care is managed in a team, where the gynaecologist and your Haemophilia Treatment Centre discuss the treatment options with you.
What options are there?
These days there are many treatment options available such as the simple non-hormonal method of tranexamic acid.
It is now known that there are no problems with using female hormones (either the combined contraceptive pill or other progesterone medications such as provera, or norethisterone) in a continuous way, to skip periods altogether. There is a hormone releasing IUD (interuterine device that is placed inside the womb) that works well to reduce heavy bleeding and is often offered to young women once their body has matured. If you are concerned about skipping periods keep in mind that at certain times it is quite normal for women to go for many months without getting their period, such as during pregnancy and breastfeeding. In previous generations women who had 10 or 15 babies and who breastfed them all would have had less than 50 periods in their lifetime!
Generally, your medical care team will suggest trying all of the medication options before considering surgery such as hysterectomy (surgical removal of the uterus), or procedures such as endometrial ablation, where the lining of the uterus is removed to reduce heavy bleeding. After these kinds of procedures you will not be able to have children and these procedures are not usually recommended for young women who might want to have children in the future. It is also worth remembering that all operations, including hysterectomy, carry risks of bleeding complications.
Endometriosis
Girls and women with bleeding disorders have an increased chance of having a condition called endometriosis, where tissue similar to the lining of the uterus (womb) grows in the pelvis outside the uterus and can bleed during menstrual periods. Endometriosis can cause pain and period problems.
Do I need an operation?
Just because you have pain does not mean you need an operation. Most, if not all endometriosis can be prevented by reducing or stopping the bleeding altogether through effective treatment. Reducing the bleeding also gives your body the chance to absorb any bleeding outside the uterus (just like a bruise on your arm will be reabsorbed).
If reducing or stopping the bleeding results in the pain disappearing, you can avoid surgery and the risks with having an operation.
Having children
If you want to discuss your questions about having children, talk to your Haemophilia Treatment Centre team and your gynaecologist. They will also discuss with you if they believe you might benefit from seeing other specialists. You may also find it valuable to talk to a social worker, counsellor or psychologist at your HTC about your situation and your future plans. Your HTC can also refer you to a counsellor in the community if you prefer.
Answered by: Doctor