I’m 21 and I’ve just been diagnosed with endo, although it has all been removed now via a lap. My endo specialist is v keen for me to go on the pill to prevent it growing back which makes sense to me, but I’ve had terrible experiences with medication in the past and I am a bit scared. I’ve never tried hormone treatment before so I have no idea how I will react, however I always get horrible side effects to any drugs I try so I am anticipating that I will experience something or other.
Due to a history of migraines she wants me on cerazette, but after some research I’ve discovered that a lot of people experience mood swing type symptoms and quite often have depressive moods. I’m prone to depression as it is - last year i had a severe depressive episode for which I needed emergency crisis intervention from my local mental health team - and I am worried that being on a pill that will trigger depression again. I want to stay as safe as possible.
I don’t know what the alternative could be though, does anyone have any ideas? I plan to talk to my doctor about it but I don’t have an appointment for a few weeks as I am recovering from surgery atm. Any help or advice would be much appreciated!
Thank you!
Best,
Hannah xo
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hannah11
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Hi, there isn't really any solid evidence that being on the pill prevents endometriosis, or stops it "growing back", if the pill does help - it is merely suppressing the symptoms. The leading specialists in endometriosis believe that if all endo has been recognised and thoroughly excised, for most women it does not recur, however it is more likely that new disease is found in under 25's.
Personally if I was in your position and you think you are coping ok with your periods and any symptoms you have without being on the pill, I would consider carrying on as you are. If you think being on the pill would help you, it's not unreasonable to try one, but as you haven't tried any hormones before there's not really any way of knowing how you will react to them. Many women do get various side effects from hormones, unfortunately low mood is a side effect of progesterone - but it doesn't mean that you will definitely be affected by it. Getting some minor side effects at first can be expected, and "ideally" it's best to give it 3 months so that your body can get used to the change, as often some side effects pass. Unfortunately there really is no way of knowing how these things affect us other than - suck it and see!
This article gives lots of advice on the pill gpnotebook.co.uk/simplepage... and if you look at the "pill ladder" on it, or on this one too - which shows more pills: clinicalgate.com/1-contrace... They compares the amount of hormones in each one. There are several combined pills with a lower dose of Oestrogen - loestrin 20, femodette & mercilon. If you do decide to try one, I would have a chat with your GP and ask whether they think any of them would be a more suitable for you in regards to your migraines. You can also "tricycle" the combined pill where you take 3 packs at a time without a break to skip periods, many women find this helpful, again please check with your GP if doing this is suitable for you.
Hope you recover well and the surgery was a success.
Thank you so much for getting back to me with all this helpful information. I can't tell you how much i value it.
I wasn't aware that there was no solid evidence that the pill prevents endo as my gynaecologist (who is an endo specialist) led me to believe that it would stop the endo growing back. Do you have any more information on this that I could look over please? I would really appreciate it. I'd like to go look over it and then go back to my gynaecologist and talk it through with her.
I was also wondering if you could show me any articles by the leading endo specialists who recognise that if endo is properly excised the probability of it recurring is rarer please? I would be so interested to know more about that!
I guess what I am worried about is not treating it properly now after it's all been removed and doing something that results in it coming back. I don't really know what to do. I thought going on the pill would be my safest bet but seeing as it doesn't prevent it i'm not sure now. It's all abit scary. I would hate to have to go through another lap sooner than i needed to, or go through one again at all if it could've been prevented somehow.
Is there any life style changes I can make which will slow the endo down or anything? i guess I really need to do some research.
Thank you for all your information about the different types of pills. I found that so helpful. I guess if i go on a combined pill with low oestrogen i run the risk of getting migraines, but if i go on a POP i run the risk of low moods. It's up to me to pick the lesser of two evils. I need to think this over, and in fact if i want to take a pill at all now.
I really look foward to your reply. Thank you again for all the help!
I think you might find it interesting / useful, learning the known facts on endo - which for some reason we are not always told by Doctors, and many other places' resources are not up to date. Have a look at endopaedia.info which is Dr David Redwine's website, Dr Redwine truly pioneered excision, and the modern concepts of treating endo.
This book that I posted about is excellent, covers everything and makes it all really easy to understand. healthunlocked.com/endometr...
Because we see / hear women women saying their endo has come back so often - many think this is the norm and inevitable. However this is mainly because during surgery their endo was only "burned" - by a non specialist, so never fully removed in the first place. Even when someone has had excision with a specialist, it is more likely to be missed disease, or "persistent disease" - which is because it wasn't excised thoroughly with wide enough margins in the first place. True recurrence is the exception, although more new disease is found in under 25's, but it's quite possible that it was there all along - and it just wasn't as visible previously.
These are a couple of articles about the "cure" for endo:
Vital Health is Dr Andrew Cook's practice / website, he is another one of the leading endo specialists in the US - there's loads of endo articles on there, all of them are excellent.
This is another really informative article from another of the leading US specialists I previously posted - healthunlocked.com/endometr...
It is all a bit scary and I do understand your worries, but it's also good to make informed choices about these things, and not feel that you have to take hormones unless you want to. Ask your specialist can she point you in the direction of any research papers that shows that the pill can prevent endometriosis - see what she says! If you want to know before your appointment, contact her secretary and get them to ask her in advance about it.
Lifestyle wise there really is nothing you can do that will affect the disease itself, anything like that can only affect the symptoms. Just aim for "normal!" healthy living as everyone "should" do anyway. Trying to eat well can help with symptoms for some, look into anti inflammatory foods / diets / supplements. There is an "endometriosis diet" but there's no evidence that it's effective, or that it will be beneficial in helping everyone with symptoms, and it's quite restrictive really - but some women do swear by it.
You could also look into / ask about another combined Pill called Qlaira this has a different Oestrogen in it to 99% of the other pills available. It is supposedly more "natural" - not quite sure whether that has the potential to be less likely to cause migraines. Unfortunately it's very expensive compared to all the other pills, so you may find your GP is reluctant, or unwilling to prescribe it, especially as a first choice.
Try not worry about other people's bad experiences, I know easier said than done! But hormone treatments do seem to be a very individual thing - so what suits one doesn't suit another etc. You just have to do what is best for you with everything. Good luck with it all!
So sorry for the late reply. I've been struggling so much with pain since the lap 3 months ago and this month my period was yet again incredibly painful. I've been quite exhausted from it all and not had the energy to keep up to date with all my online stuff.
Thank you so much for giving me all that information. I've been reading over it all slowly over the past few days and making notes about what i will ask my specialist when i see her next week. I ordered the book you recommended and will hopefully read it before the appointment too!
I think I am going to try and stay away from the pill if possible. Sometimes it is tempting, especially because my periods are still quite bad, but in all honesty from what i can see it doesn't seem to stop the problem, it just represses it, and i would rather deal with the root cause. It's hard though because I was under the impression that my periods would be a bit more manageable after the op.
Anyway sorry i am offloading here!
Thank you again for sending me all that info - I loved reading all the stuff on endopaedia especially. it was very interesting and informative and i feel like i know a bit more about it all now.
Hi, don't worry my reply is late too! That's really difficult for you, it is expected that the first few periods after excision surgery can be worse for some women. So maybe you are still healing, and at that phase of your journey.
I'm pleased that you found all the information interesting though, really hope things start improving for you soon.
Hi. I have found that no matter at pill I try, theye will always impact on my mental health. I last tried the combined pill and within a week felt like I was losing my mind. My GP told me before I tried the combined pill that I would be at a slightly higher risk of mood changes as I just don't get on with hormones. I personally think you need to do what is best for you. I flat out refuse hormones now because of the negative impact it has on my mental health and in no way helps my pain.
Hi Amy, thank you so much for replying. I am heartbroken to hear about your terrible experiences with hormones ): It must've been so hard to go through all that.
I'm sort of thinking that the pill might not be the best option for me, but i don't know what to do instead, does anyone have any ideas?
I have been referred to the pain clinic and got an appointment with my consultant in the new year to discuss surgery again. Maybe discuss pain clinic with your consultant?
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