Starting a new treatment due to symptoms or delayed surgery
Advice on starting a new treatment if you are struggling with symptoms or because your surgery has been cancelled/postponed
If you are not using any hormonal treatment currently but would like to start something new, either because you are struggling with symptoms or because your surgery has been cancelled/postponed:
Progestogen only pill (POP):
The desogestrel containing POP (e.g. Cerazette, Cerelle, Feanolla) is currently recommended for women who want to start an hormonal contraceptive during the pandemic. This is because it is safe for the majority of women and does not require any checks of blood pressure or weight before starting it. If you would like to start this to control your endometriosis symptoms we would recommend starting at a double dose (two tablets once a day) as this is more likely to control your bleeding and any associated flares in pain.
Important: remember that you should not stop the POP if you get some bleeding, it is designed to be taken every day. Stopping and starting the POP is likely to result in irregular bleeding and it won’t work as a contraceptive. It can often take a number of months for bleeding to settle down, so it’s worth persevering for 3 months at least.
If you have tried a double dose of a desogestrel POP previously and it didn’t work for you or even a single dose gave you unacceptable side-effects (it suits most women very well, so please don’t expect side-effects...) then our next recommendation would be Provera tablets. These need to be taken three times a day and we would suggest starting at a dose of 10mg, though this can be reduced to 5mg if it is working for your symptoms but you don’t like the side effects (although again it is usually very well tolerated).
Important: Provera is not a licensed contraceptive and therefore you should use condoms as well if contraception is required. If the tablets work for you and you need contraception, you could consider asking your GP whether they are giving Depo-Provera injections currently, however, we are aware that many are not. We usually recommend at least a month’s trial before switching to ensure you don’t have side-effects as the injectable form can’t be taken out after it is given.
If you are really struggling with symptoms, it might be worth discussing with your GP whether you could start on a menopause injection such as Decapeptyl or Prostap. Although these drugs are only licensed for 6 months to treat endometriosis, 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. They can be very effective at controlling symptoms and may also allow you to see how much of your pain is driven by factors other than endometriosis/adenomyosis/your hormones (see below). If you are going to start this treatment we would suggest having three months of treatment without HRT and then adding HRT in, in our experience this achieves better pain relief than starting them at the same time. It is worth noting that the way the drug works means that you will often get a flare in your symptoms (both pain and bleeding) in the first couple of weeks of treatment, however beyond that you are likely to notice menopausal side effects (hot flushes, mood changes and sometimes joint pain) but your pain should begin to decrease and your bleeding stop. If after 3 months there has been no improvement to your pain, we would suggest stopping the treatment, however, if it has been effective then we recommend starting some HRT to remove/reduce the side effects and protect your bones, blood vessels and heart. 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: Menopause injections are not contraceptive. Although it is unlikely that you would conceive on them, we have seen this occur, and the effect of these injections on a developing baby are not known. Therefore you should use condoms if you require contraception and are using this treatment.
If your surgery has been postponed
We can only imagine how disappointing it must be to have had your surgery postponed due to the pandemic, especially if you had been waiting a long time for it. Whilst there is nothing we can do to alter that situation, we would like to offer you some reassurances and suggest alternative strategies to get you through the coming weeks to months as best as possible:
- There is no evidence that endometriosis is a progressive disease. Therefore not operating on less surgically complex stage I (mild) disease does not mean that by the time you do get your surgery you will have, for example, more complex stage III (severe) disease.
- Current recommendations are that endometriosis can be managed with either medical treatment (with hormones) or surgical treatment as a first line. There is no good evidence that one is better than the other. Therefore if this was to be your first operation and you have not tried hormonal treatments before, we would strongly suggest that you read the section above on medical treatment and then discuss with your GP about starting one of the treatments that are currently available. Even if you have tried hormones before it would still be worth reading this information, as there may be different options to consider or different ways of taking a treatment that may work better for you.
- Some clinicians believe that retrograde menstruation (bleeding from the womb into your pelvis through your fallopian tubes at the same time as your period) may continue to gradually increase the amount of endometriosis present and therefore recommend therapies that stop your periods in combination with surgery. Even if this is not the case, the experience of painful periods is unpleasant and may exacerbate other pains. Therefore, unless you have a reason why you don’t want to take hormones, we would recommend considering a hormonal treatment that stops your periods whilst waiting for repeat surgery. Possible options available to start despite the current situation are suggested in the section above on medical treatments.
- Surgery for endometriosis often does not remove all the pain. There are a number of explanations for this observation, but one possible reason is that there are other factors that contribute to the pain too. In our experience factors that contribute to chronic pelvic pain in women without endometriosis, commonly also occur in women with endometriosis too. We describe some of these factors in the section on endometriosis-associated pain, along with some strategies you can put in place yourself to start to help with these. Whilst they may not take away the pain altogether, they may help clarify how much of your pain is driven by endometriosis and mean that when you do finally get your surgery it has the best chance of being effective.
- If surgery is being done to improve fertility or before fertility treatments, there is some evidence that this is best done immediately before trying to conceive/IVF treatment. Therefore given the current recommendations on planning for pregnancy during this pandemic, it would probably have been advisable to delay surgery until this is over anyway.