2018, Responses from: Mr Michael East, Prof Neil Johnson & Dr Simon McDowell
“I am 17 and have been prescribed the pill by my doctor. Do I have to try the pill before being referred to the hospital? My family don’t like the pill”.
Michael East: Basically if you have a complaint of ‘menstrual distress’, and by that I mean debilitating periods that cause you to loose time from school or work, then there is a high chance that you will be suffering from endometriosis. Most women with endometriosis at your age will have stage 1 disease and the use of a progesterone pill as opposed to a standard combined oral contraceptive pill may be a reasonable treatment to try. You do not have to do anything you don’t wish to however as your body is yours only. Always make sure you have a support person with you during consultations as it is easy to feel overwhelmed by the whole process.
Neil Johnson: There’s no requirement to take the combined oral contraceptive pill (OCP) before being referred for a specialist opinion. The OCP may be unsuitable for some young women for a variety of reasons. However the pill will often help to resolve symptoms of endometriosis and in some cases – but undoubtedly not all cases – may prevent (or at least postpone) the progression of endometriosis. It’s always worth discussing the reasons behind a prescribed medication being unsuitable with your doctor. Ultimately it is generally your GP who will make a referral to the gynaecology department at the public hospital, so your doctor would need to be sure that all options (including progestin only pill, such as Cerazette, as we recognise that progestin therapy is sometimes more effective for treating endometriosis or suspected endometriosis) have been discussed, before making a specialist referral.
Simon McDowell: Young women with period pains will often have improvement of their pain with use of the oral contraceptive pill. For many reasons though, use of the pill may not be suitable. Some woman may simply not want to use a hormonal pill, that is ok. It would seem sensible to have a discussion with your doctor on why they think it is worth trying, and also the reasons why you may wish to avoid. Local DHBs may encourage general practitioners to try the pill first, and only refer if symptoms persist. Your GP may need to communicate to the local DHB why the pill is not suitable for you.
“I am 24 and have been told by my doctor I might have endo coz I’ve had all the symptoms for ages. I am happy to go on the pill but am confused because I have read where the combined pill that is usually prescribed, can cover up the symptoms and doesn’t stop endo getting worse if you do have it. My Mum has endo by the way”.
Mr Michael East: I have similar concerns about the standard ‘combined oral contraceptive pill’ (COCP). I tend to advise a progesterone only contraceptive at a high enough dose to stop ovulation such as Cerezette or Depo Provera. In theory such may stop progression of endometriosis and allow you to avoid surgery. It can be difficult to access surgery through the public system as there are so many people waiting.
Prof Neil Johnson: I’m not surprised you’re confused. We know that the pill (combined OCP) is an effective treatment for symptoms related to endometriosis for many women. However it does treat (or ‘cover up’) symptoms and we know that it sometimes doesn’t stop the progression of endometriosis. The decision whether to proceed with laparoscopic surgery to remove endometriosis (which, of course, is a minimally invasive surgical procedure and carries with it recognised complications, although in expert hands the risks are small and this can be very effective providing good follow-up care is provided, not to mention that it provides a definite diagnosis) versus continuing with medical treatment can be tricky. Although, if you’ve reached 24 years old and have all the symptoms for a considerable period of time, it might be time to discuss the pros and cons of surgery. Endometriosis is a disease that classically progresses to a woman’s mid twenties, then less so or not at all after that – although there are exceptions to this rule.
Dr Simon McDowell: Women with suspected endometriosis will generally have more profound and severe symptoms, and early referral is a good idea. Hormonal treatment may remedy symptoms, and a progestogen based agent is recommended. It may not stop progression of disease, but if symptoms are controlled, surgical investigation may not be warranted. Long-term followup can be initiated, and then surgery discussed if symptoms worsen, or the patient-doctor team feel surgical investigation is then advised.
Good & effective communication is the key. It is great you are asking questions, and I advise continuing to engage with your doctor, or seek another primary practitioner if you feel this is not working for you.
“I’ve got endo and I think the doctors burnt it off and said the pill will stop it coming back. I didn’t want that thing inside. I want to have kids but not yet. What pill do you think is best”.
Mr Michael East: I would advise using Cerezette. It is a progesterone only contraceptive pill but as effective as standard combined contraceptive pills in preventing pregnancy. It is not full subsidised however and you would be looking at a cost of around $50 every 3 month script!
Prof Neil Johnson: Laparoscopic ablation (or ‘burning it off’) is appropriate for certain types of endometriosis, especially endometriosis on the surface of the ovaries. We now recognise that laparoscopic excision (or ‘cutting it out’) is superior to ablation for most other forms of endometriosis. Post-surgery it’s often a good idea to take medical treatment to minimise the chance of endometriosis recurring. Any pill (combined OCP) will likely be effective in reducing the chance of endometriosis recurring. However we recognise that progestin hormone treatment has stronger evidence of treating endometriosis that the combined OCP and it seems logical that a progestin hormone environment’ in the body will minimise the chance of future problems. A really good progestin-only pill is Cerazette, which has good contraceptive action and also prevents ovulation as effectively as combined OCPs, although as it’s newer, it’s slightly more expensive than just taking a ‘funded pill’.
Dr Simon McDowell: Evidence suggests a progestogen method is desirable here. Options include oral progestin therapy such as cerazette, a mirena, or depo provera injections. For some women a combined pill will be more suitable after balancing symptoms control, contraception needs and side effects of treatment. Long-term follow-up is recommended, and if symptoms worsen we would advise specialist review.