Endometriosis
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Unable to obtain usual treatment or asked to change treatment

Advice if you are unable to obtain the drugs you were taking or you are being asked to change to different drugs

Medical treatments

We are hearing lots of stories of women being unable to obtain the drugs they were taking or being asked to change to different drugs. This is obviously upsetting for a variety of reasons. 

These are our recommendations for how hormonal treatments could be managed during the COVID-19 pandemic, including advice from the relevant bodies as appropriate*. Please remember that although your GP will not want to see you face to face to discuss these treatments, most are able to offer telephone appointments and electronic prescription services. Therefore if you have concerns we would suggest you contact them. It is also important to be aware that prescription services are taking longer than normal and therefore you should ask for a repeat prescription earlier than you would normally. 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 are pills containing estrogen 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. However, current advice is that as long as these were OK at the last check, repeat prescriptions can be provided for the next 6-12 months without you being seen in person. 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 simply 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 of the 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. 

There are also pills that 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 every day. These brands are Femodene ED, Microgynon 30 ED and Zoely. You can do the tailored regime with these if you just 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 and 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 estrogen (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. Current guidance recommends that during the pandemic a further 12 month supply of these pills can be given without a review. 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 everyday. If this still occurs, our recommendation is to double the dose of the pills. To do this, just take two pills once a day rather than one. There is most experience doing this with the pills containing desogestrel, but it is safe with any of the POPs and the dose of progestagen is still relatively low compared to other treatments. Please discuss this with your GP to ensure you get sufficient repeat prescriptions.

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 is the injection that lasts for 12 weeks. We know that this has been worrying many women, as they have been advised to change to the progestogen only pill to avoid the need for a face-to-face appointment. This recommendation is reasonable if the injection is only for contraceptive purposes, however, if it is to control symptoms associated with endometriosis this might not be the best solution. It is therefore worth discussing this with your GP and reminding them of the reason why you use this treatment. Some GP clinics may be offering “drive thru” services, where you could be given the injection. If you do need to switch to a tablet treatment during the pandemic 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) – consider starting on a double dose (150 mg, once a day)

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 a number of months but that may be changing. Therefore, if you would be happy to give yourself an injection, it might be worth discussing this with your GP to see if it is available locally. Current recommendations are that up to 12 months of this preparation can be given without needing a face-to-face review or blood pressure check.

 

Provera tablets:

If you are taking Provera tablets already, there is no reason why you cannot continue on this treatment without a face-to-face review for the duration of the pandemic. 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 4th 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 would recommend adding in the desogestrel containing POP even if the implant is not yet out of date. Obviously if you wish to start trying to get pregnant you will need to have the implant removed, but please see the information in the fertility section.

 

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. If this is the case then please see the information in the fertility section. It is thought that the risks of pregnancy in the 6th 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. It is fine to use a double dose of the POP as described above even in combination with the coil.

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 can not 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 not evidence that they will work beyond their change date. Again, there is no need to have it removed however.

 

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 or being told that they are not an essential treatment. 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 during the pandemic:

  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 throughout the pandemic. 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 estrogen on board! This HRT should be a low-dose continuous combined preparation (i.e. it contains a low dose of both estrogen 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 estrogen. Estrogen-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) by the end of the pandemic it is important that you have a bone scan to make sure that your bones are strong. These scans will not be available during the pandemic however. You can maintain bone strength by ensuring your diet contains plenty of calcium-rich foods and that you get regular weight-bearing exercise. We know this may be difficult during times of social-distancing/isolation but it is worth trying to do this where possible, for example by walking, gentle running or following one of the many online exercise programs that are freely available currently. Please listen to your body when doing these though and stop if you find it worsens your pain.