Unable to obtain usual treatment or asked to change treatment

Advice if you are being asked to change to different drugs

Medical treatments

We are hearing lots of stories of women being asked to change to different drugs as the previous medication(s) may have been unsuitable due to limited benefits or side effects. This is upsetting for a variety of reasons. 

These are our recommendations for how hormonal treatments could be managed including advice from the relevant bodies as appropriate*. Please remember that although your GP may not want to see you face to face to discuss these treatments, most can offer telephone appointments and electronic prescription services. Therefore, if you have concerns, we suggest you contact them.  Unplanned gaps in hormonal treatments could lead to breakthrough bleeding and a flare in pain.

* Faculty of Sexual and Reproductive Health (FSRH), Royal College of Obstetricians and Gynaecologists (RCOG), British Menopause Society (BMS), Royal College of General Practitioners (RCGP)

If you are currently using...

Combined oral contraceptive pill (COCP): 

These pills contain oestrogen and progestogen (e.g. Rigevidon, Microgynon, Femodene etc.). Normally you would need regular checks of your blood pressure and weight before being given a repeat prescription. When these pills are used to treat heavy bleeding or painful periods/endometriosis-associated pain, we find they work best if you aim to stop your periods altogether. Therefore if you are currently taking them in a traditional way (e.g. 21 pills followed by a 7 day break) you may want to switch to what is known as the “tailored regime”. To do this, you run the packs one after another without a break until you get bleeding for 2 days in a row. If this happens, then don’t take the pill for 4 days and then restart, again running the pill packets back to back. This strategy allows you to have as few bleeds as possible per year and keeps them short when they do happen. As long as the break between pill packets is 4-7 days and doesn’t happen more than every 21 days then the pill will still work as a contraceptive. There is no harm associated with using the pill this way, and it is a recommended way of taking the pill even if only using it for contraception.

Important: The tailored regime is only suitable for pills that are exactly the same for the whole 21-day packet. These include most commonly prescribed pills (Rigevidon, Gedarel, Loestrin, Microgynon, Cilest). If you need to check whether your brand is one of these types, there is a table here: https://bnf.nice.org.uk/treatment-summary/contraceptives-hormonal.html. Any pill listed as “Combined Oral Contraceptives Monophasic 21-day preparations” is suitable. Some pills come in packets of 28, however, 7 of the tablets are “dummies” i.e. they don’t contain any hormones and are just used to remind you to take a tablet daily. These brands are Femodene ED, Microgynon 30 ED and Zoely. You can do the tailored regime with these if you throw away the dummy pills, but it is probably best to contact your GP and ask to change to one of the standard 21-day preparations. Any pills listed as multiphasic (e.g. Logynon/Logynon ED, TriRegol, Synphase and Qlaira) are designed to mimic the hormonal changes of the natural menstrual cycle, so the doses of hormones in the pills varies. These pills are therefore not suitable for the tailored regime. Again if you would rather try a regime that reduces the number of periods you have during this time, we would suggest contacting your GP to change to a monophasic brand.

Progestogen-only pill (POP):

These are pills that do not contain oestrogen (e.g. Cerazette, Cerelle, Norgeston, Noriday). There are very few women who can’t take these pills, this means that they can be given to women who can’t take the COCP because of heart disease, migraines with aura or a history of blood clots for example. Some women find they get irregular bleeding when using these pills and as well as being annoying, this bleeding can flare their pain. Remember that irregular pill-taking is a common cause for this, so try to take your pill at roughly the same time every day.

Important: Remember that unlike the COCP you should not stop the POP if you get some bleeding. Stopping and starting the POP is likely to result in irregular bleeding and it won’t work as a contraceptive if you miss tablets.

Depo-Provera (contraceptive injection):

This injection lasts for 12 weeks and ideally should not be switched to an oral treatment if endometriosis symptoms are controlled. If you do need to switch to a tablet treatment for any reason, we would suggest two alternatives:

1. Provera tablets – these need to be taken three times a day (10mg dose)
2. Desogestrel POP (e.g. Cerazette)

Provera tablets are not licensed as a contraceptive and therefore if you do need contraception too, we would suggest you use a condom or opt for the POP. There is also a different version of the injection called Sayana Press, which is an injection you can give yourself. This has been unavailable for several months, but that may be changing. It might be worth discussing this with your GP to see if it is available locally.

Provera tablets:

If you are taking Provera tablets already, there is no reason why you cannot continue this treatment without a face-to-face review. If you are only taking 5mg three times a day and find you are getting some irregular bleeding, then it might be worth considering increasing this to 10mg three times a day. Please discuss this with your GP to ensure that you can get sufficient repeat prescriptions, as stopping it abruptly is very likely to cause bleeding. 

Contraceptive implant:

There is no need to get your implant removed currently, even if it is beyond 3 years since it was inserted. It is thought that the risks of pregnancy in the 4^th year are very low, however, its effectiveness as a contraceptive although likely is not guaranteed. If you find that you start getting breakthrough bleeding and/or flares in your pain, we recommend adding in the desogestrel-containing POP even if the implant is not yet out of date.

Progestogen-secreting coils (Mirena, Levosert, Jaydess, Kyleena):

There is no need to get your coil removed currently unless you wish to start trying to get pregnant. It is thought that the risks of pregnancy in the 6^th year of Mirena/Levosert use are likely to be very low. However, we do often find that bleeding and/or pain start to recur before the end of 5 years of use. If this is the case, then we would recommend adding in the desogestrel-containing POP or Provera tablets.

Important: If you are using your coil as part of your HRT in combination with a menopause injection such as Zoladex, Prostap etc., then it cannot be used beyond 5 years. This doesn’t mean that the coil needs removing, but your HRT preparation will need to change. Please let your GP know if this is the case. The other coils, Jaydess and Kyleena, are not often used to control symptoms, however, if you do have one of these and are due to have it changed, current recommendations are that you use condoms or the desogestrel-containing POP as well for contraception as there is no evidence that they will work beyond their change date. Again, there is no need to have it removed.

Menopause injections (Decapeptyl, Zoladex, Prostap):

These are the injections that make you temporarily, but reversibly, menopausal. We have heard from a variety of sources that women are having trouble accessing these injections. We feel very strongly that these injections should continue as they allow women to have some control over their symptoms and to continue to work and care for their families. The drugs are only licensed for 6 months to treat endometriosis, however, there are many women who use them “off-license” for a number of years in combination with a low dose of Hormone Replacement Therapy (HRT) to protect their bones and heart/blood vessels and to reduce the associated menopausal symptoms. We suggest you contact your GP to discuss how you are going to access your injection well in advance of the date it is due. These are our recommendations for how this treatment might be able to be accessed:

1. If you usually receive Zoladex, discuss with your GP changing this to Decapeptyl or Prostap. Although the drug works in the same way and so should be just as effective, it is given through a different type of needle. GPs may be able to provide this as a “drive thru” service similar to Depo-Provera.
2. If you usually have monthly (every 28 days) injections of Zoladex, Decapeptyl or Prostap, discuss with your GP changing to the 3-monthly preparation. You might find it wears off a bit earlier than it is supposed to, but there is no reason why you can’t have it a couple of weeks early if that is the case (we often give the 28 day injection on day 25 for women who get a flare in symptoms just before the next injection is due).
3. If you have been using one of these injections successfully with the plan to stop it after 6 months or when you have your surgery, then we would recommend that you continue it. Although this is not a licensed use, as mentioned above, many women do this and it will hopefully allow your symptoms to be controlled. If you are going to use it beyond 6 months, however, then this does need to be in combination with some HRT to prevent irreversible side effects – you are also likely to feel much better with a bit of oestrogen on board. This HRT should be a low-dose continuous combined preparation (i.e. it contains a low dose of both oestrogen and progestogen and the same dose is taken every day), however, it doesn’t matter whether this is a tablet or a patch. Some preparations that are commonly used include Kliovance, Tibolone [Livial] and Evorel Conti. If you have a Mirena coil (that was inserted less than 5 years ago) then you can use this as the progestogen part of the HRT and therefore only need an oestrogen. Oestrogen-only preparations commonly used include Elleste Solo (1mg), Evorel and Sandrena. Your GP will be able to discuss these options over the phone as they are very familiar with prescribing low dose HRT to post-menopausal women. Please note that the risks of HRT you may have heard about in the media apply to women of menopausal age. If you are using these drugs to replace hormones taken away by the menopause injections but would not otherwise be menopausal the benefits far outweigh the risks.

Important: If you will have been using the menopause injections for two years or more (even with HRT) it is important that you have a bone scan to make sure that your bones are strong. You can maintain bone strength by ensuring your diet contains plenty of calcium-rich foods and that you get regular weight-bearing exercise, for example by walking, gentle running or following one of the many online exercise programs that are freely available. Please listen to your body when doing these though and stop if you find it worsens your pain.