Hi everyone, just after any advice, experiences for my 18 yr old daughter. She was diagnosed and treated for endometriosis with a laparoscopy in March. Follow up with gynacologist was short and sweet it's like a weed in a garden will keep growing back! She needs to think about going on the pill as this helps, but she suffers from migraines and has since she was nine, so he said this May cause problems trying to get on the correct one. She has just started a job as a teaching assistant and so we need to be mindful of this too!
Can anyone who has tried different pills/medication who also suffers with heads help?She still suffers from lower tummy and back ache and achy legs and hips, She has gp appointment next week, our gp is not great when it comes to this not much knowledge of endometriosis ? Any previous experience from medication for us to discuss with our go would be greatly appreciated.
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MelT1968
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It isn't quite a weed, but it certainly isn't guaranteed to remain at bay forever more each time all existing endo is removed. Once existing endo is attacked - that it curtains for that endo, provided it was shallow enough.
The problem is that while most surface growing endo is shallow and once treatment is enough to zap it with diathermy or lasers, there can always be some deeper growing endo cells that survive the assault. These deeper lesions are able to remain active and may need a subsequent excision surgery to get rid of them.
And the other threat is from continuing to have periods - which presents a risk of endocells from the womb getting washed out by period blood back flowing along the fallopian tubes and escaping in to the tummy where they can form new lesions of endo on whatever they land on.
Stopping or reducing periods is the best course of action between the need for surgeries, as it will reduce the likelyhood of new endo from backflow bleeds threatening the ovaries and fertility.
Ovaries being the first target in the firing line at the far end of the fallopian tubes.
There are dozens of option for getting to grips with periods.
Birth Control pills can be used to reduce the number of periods a year from 13 down to 3 or 4
There are combi (oestrogen and progesterone) and pop (progesterone only) pills.
Loads of brands available and each has a slightly different set of ingredients.
The better options are the methods to stop periods altogether.
Mirena Coil - lowest of all the hormone doses and lasts 5 years.
Skyla Coil or Nexplanon arm implants -last 3 years
Depo- Provera injections are every 3months
There are others, - but those are the main ones on offer in the UK.
Google NHS contraceptives and there are pages of info on each of the options.
You can also google the nameof the brand and patient information leaflet so you can read through the paperwork that comes with the drug from the chemists before your daughter decides if it is the next one she wants to try.
They don't allsuit everyone, and to some extent it is trial and error to see which turns out tobe the most effective. One thing for certain is they all need settling in time, for the body to adjust to the new hormone levels and this can include headaches. but it is worth doing, because of the benefits of no longer having painful periods and risking fertility loss with endo. It will make it a lot easier to do her job at school.
There are a lot of teachers and teaching assistants on this forum and lots of students and school pupils too. I am a TA (unsalaried) myself. In fact there seem to be a disproportionally greater number of women on this forum who work with kids than in the general population.
Take a random class of 30 girls and female teachers and 3 will have endo...they might not be aware of it yet, but that's how common endo is.
Remembering to take a daily pill or daily pills is a burden that something like the coil avoids. Once inserted you just forget about it and get on with life. Once it stops periods which takes 4-6months then that's it. no periods, no period pains, noPMT, clears up spots in a lot of cases too. Saves a fortune in sanitary products. By far the coil or arm implants offer the best in terms of being hassle free long term period controllers and are lower doses than the pill options.
Skyla is a smaller version of Mirena which is why it only lasts 3 years, but to be honest, time goes by so quickly when you are not encumbered with periods that 5 years is much better value.
You can still have followup surgery on endo even with the implants or coils installed if all existing endo was not removed in the 1st op.
Thank you very much for taking the time to reply you have been very informative we shall certainly take your advice on board and spend the time researching the information you have provided us with. Many thanks again.
Thank you so very much it's great to have a name to start with it seems to a bit of a minefield and definitely trial and error but this is a great to start with do you have the knowledge as you have tried this? thank you again
Your daughters story sounds exactly like mine.. Im 18, had an lap in march and now im a teaching assistant.. Weird.
I haven't got much info for you (sorry) but I just wanted to comment to say that make sure you dont push her into anything. My family is pushing me to go for another lap (im stage 4, everything stuck together) and I dont want to. Don't try to force her to go on any mediciation she doesnt want to. I know how it feels, its horrible and depressing!
Ah bless you for replying. No I wouldn't dream of pushing her into anything. I would much rather her not go on the pill/ mini pill with her migraine history and we lost her paternal grandmother to breast cancer at 54. Your right it's so deliberating and it gets her down to she loves her new job so much fortunately but it's hard going yesterday and today has been not great with constant tummy ache. Do you do or take anything that helps? My daughter has been trying a gluten free diet and no red meat it has defiantly helped she reckons. The consultant says the way forward is the pill as it will come back, but again it's more pills that seems to be the answer and trial and error!! I do hope you get sorted out too as her mummy I hate seeing her so uncomfortable, good luck.
I've just posted my own experience, I was taking a herbal tablet called Agnus Castus which you can't buy in shops but you will find on Internet be mindful that you need to get the correct dosage if you google Agnus Castus you should be able to find all the information you need it is used to help regulate hormones, I also take a magnesium supplement which is supposed to help with endometriosis and starflower oil, I do find exercise helps a lot to, I avoid drinking caffeine and foods that are fatty and try to drink a lot of water, hope this is of some help.xx
Thank you so much she us already taking the magnesium along with pure evening primrose oil omega 3 and vit b, but that's great with the herbal one I shall definitely get her some to try best wishes Mel x
Hi it definitely is just trial and error I'm afraid. I took lots of different brands of the pill and felt awful on them. And after putting me on all of them they told me that I have high oestrogen levels! I have a Marina coil now which they put in when I had
My lap, and it's been in over a year. My periods are A LOT lighter now but still there and still painful, but I've been advised to ask at the Dr's for something to top it up or alternatives. So even if your daughter decides on one thing and it's not fully
Working let her know she's not alone and to battle through it to get the treatment she needs. It's a horrible disease and can make you feel really alone. I hope she gets some good results from whichever she chooses
Thank you for your response everyone has been so helpful I so glad I posted this question. She is dead against the coil, but I'm worried about the side effects of the pill and the upset of trying them all out ! But we certainly are armed with so much more information then what we had before I posted the question. I do hope you get sorted out you poor lady thanks so much
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