Once you have been diagnosed with uterine fibroids, your next question is likely to be “What treatment should I have?”
This is quite a tricky question to answer! There are several treatments for fibroids and different treatments have different benefits and risks. The treatment that would be best for your circumstances may be different from the one that is best for another woman with fibroids. For example, if you have a hysterectomy you would no longer have any pain or bleeding from your womb as your fibroids would all be removed along with your womb. However, you cannot become pregnant after a hysterectomy! If your family is complete this may not be a concern for you, but if you would like any (more) children then you would probably prefer to try another treatment option. Other issues to consider are that some decisions are reversible if you think you’ve made the wrong decision (e.g. you can stop taking oral treatments) whereas others aren’t (e.g. hysterectomy) and some are permanent cures for fibroids (e.g. hysterectomy) whereas others may not work permanently for everybody (e.g. some women need more treatment after embolisation or myomectomy).
A decision about treatment for fibroids involves weighing up the costs and benefits of different treatments and working out whether a benefit of a particular treatment (e.g. effectiveness) is as important to you personally as a cost of that treatment (e.g. loss of fertility). Only you can really know the answer to that as it depends on your own values, priorities, and future plans. Such difficult decisions are known as ‘grey decisions’ because there is no obvious ‘best’ decision that works for everybody or ‘worst’ decision that nobody should make. If you haven’t been advised that you need a specific treatment urgently, you may like to spend some time considering the different treatment options and to discuss these with your doctor.
Sometimes, patients feel a bit nervous about discussing their thoughts about treatment options with their doctor because they don’t have the same medical expertise. However, doctors are aware when there isn’t a single and perfect treatment for a medical condition and they are likely to prefer ‘shared decision-making’ where they help you to decide on the most appropriate treatment for you, based on your symptoms and prognosis as well as your personal values and preferences. You might find it helpful to do some ‘homework’ before an appointment to discuss treatment options with your doctor, however, as it will increase your knowledge of the different treatments and help you become familiar with some of the jargon you might hear at your appointment. This preparation will help you feel more confident at your appointment and you may find it easier to ask questions once you have better background knowledge.
One source of information that you may find useful when finding out about different treatments and whether they are the right treatment for you, are ‘Decision Aids’. There are many decision aids available freely on the internet, for all sorts of medical conditions, including fibroids. Some examples can be found online (try typing fibroids decision aid into a search engine). The decision aids compare one type of treatment against other treatments and take into account your feelings about the consequences of having a particular treatment or not having it (e.g., your feelings about pregnancy, pain and bleeding, and surgery). After asking you what you think your decision is now you’ve been through the decision aid and a quiz to help you confirm your understanding of these treatment options, you are provided with a summary of your answers to the various questions and your decision at that time. You can print this out and use it to help you discuss your preferred treatment option with your family and your doctor.
Another source of information is the option grid (type fibroids option grid into a search engine) which presents a number of different types of treatments for heavy menstrual bleeding and includes a column about removing fibroids. For each option a number of different questions are asked. These are the sort of questions that a patient may ask her doctor. For example: ‘What does the treatment involve?’, ‘What are the immediate risks?’, ‘Can I still become pregnant?’ The option grid also gives information about the number of patients who are helped by the treatment and how many are likely to experience any negative outcomes from each treatment. Option grids are based on evidence about these treatments and are therefore a reliable source of information.
Please note, however, that although decision aids and option grids are reviewed regularly and changed when new evidence is available, it is still important to check with your doctor and ask him or her if there are any other treatments available that aren’t shown on the decision aid or option grid. For example, there are also oral treatments available which can be used to treat fibroids which are often not included on the decision aids.
So, if you’re feeling a bit bewildered about your diagnosis and what to do about your fibroids, here are some steps you can take to start working through your uncertainty:
- Have a look at some decision aids and option grids
- Talk to family and friends about the treatments available and what consequences they may have (good and bad)
- Write down some thoughts and questions and share these with your doctor
- Ask your doctor if there are any new treatments and ask him or her about the effectiveness and risks of these treatments
- Listen to your doctor’s opinions about treatment options and try to come to a decision
- If you are still unsure and don’t have to make a decision urgently, take your time and start again from number 1!
About the author:
Deborah Lancastle is a Health Psychologist on the BPS register of Chartered psychologists and BPS register of Applied Psychology Practice Supervisors.
Her main research interests include the psychosocial aspects of women’s reproductive health and processes explaining positive psychological and physical progress during stressful health experiences and adaptive outcomes after such experiences.
1 O’Connor A M, Stacey D (2005) Should patient decision aids (PtDAs) be introduced in the health care system? Copenhagen, WHO Regional Office for Europe (Health Evidence Network report; http://www.euro.who.int/Document/E87791.pdf
2 Elwyn, G., Edwards, A., Kinnersley, P., & Grol, P. (2000). Shared decision making and the concept of equipoise: the competences of involving patients in health care choices. British Journal of General Practice, 50, 892-897.