Current medications to control endo ??

Could I ask which forms of medication are ladies on at the moment for their Endo and is it working for you or are you having problems with it ? Would be great to hear about different methods of medications and their uses I'm due to see consultant in sept to discuss options and am baffled with it all

Thanks in advance

Lisa xxx

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  • All the meds for endo are hormone based meds.

    Most of the long term ones are to stop periods, they are normally known as birth control pills or IUDs , but we endo ladies need them for menstrual control rather than contraception (though that is the bonus).

    These are the long term methods used in between surgeries to remove existing endo and hopefully make life less painful, and go some way to try and prevent new endo from spreading.

    Endo feeds on oestrogen, so we tend to use the Progesterone only sorts. Some ladies don't tolerate the side effects and prefer to be on combi-pills which include oestrogen or estradiols.

    The Progesterone only pills POP for short can be used back to back packs to stop periods, one a day.

    The IUDs and arm implants are also progesterone only, but much lower doses than the pills.

    Arm implant nexplanon lasts 3 years

    Skyla IUD lasts 3 years

    Mirena Coil lasts 5 years and is the best in terms on long lasting period stoppers and the one most commonly used by us.

    Skyla is a new smaller version of mirena with a lower amount of drug in it so it only lsts 3 years before needing replacing.

    Next up in strength is Depo-Provera an injection that you have every 3 months and this too is progesterone based and will stop periods for most ladies within a year of starting the injections. Often a darn sight quicker than that, but 2 years maximum use for that drug due to loss of bone density. Though the loss is considerably less than that lost with GnRH drugs which are next.

    If you are of adult age 22 and over (so after your bones have stopped growing) then you my get offered a temporary menopause drug.

    These are all chemo-hormone drugs collectively called GnRH, there are a dozen or more kinds.

    The 3 most widely used in the UK are Zoladex (aka Goserelin), Prostap (aka Lupron) and Decapeptyl.

    These are super powerful drugs with some wickedly ghastly side effects and high risk of side effects lasting for months or years after you stop the drugs so they should never be taken without plenty of homework and due consideration.

    They do not kill or cure endo, they simply put it to sleep.

    But to do that, it over loads the body with chemicals causing a boost to all endo and reproductive actions in the body for a week or so called the flare stage, this causes the pituitary gland in the brain to overload and shut down and in doing so stops production of the sex hormones that keep your ovaries working.

    Sadly they do great deal more harm, because the pituitary gland produces so many vital hormones and without those your body has very little to regulate body functions and this is where the side effects happen.

    No temperature regulation, heart beat and blood pressure regulation, you go in to a state of hypothyroidism because the thyroid is no longer getting its hormones, growth hormone is stopped too - hence hair loss and loss of bone density in your trunk (spine, pelvis, ribs and skull mainly). When you stop the drug these effects may not be reversed at all or some will recover and some may not or you could be lucky and the whole of the pituitary gland eventually wakes up and you can get back to normal. This can take several months after stopping the drug. Take the hormones for ovulation - the average time taken for production of that hormone to resume is 5months, so half of patients will take longer than that or may never have their ovaries wake up.

    Certainly not a drug that suits most of us and while each person is unique in how their body copes without their hormones and some do clearly manage okay, many of us do not and become seriously unwell when so many side effects hit us at the same time. You will be aware of how unwell cancer patients get on chemo, and these drugs are used for breast and prostate cancer so the side effects are the same for cancer patients and endo patients.

    Speaking from my own experience, they are not worth the risks at all. They don't cure endo so there is no point to having them.

    The risks far far outweigh any short term benefit from pain relief... the correct strength of pain killers as and when needed would be a much better way to manage endo for a short spell.

    You should only take these for a max 6 months in your lifetime because of the loss of bone strength. which is around 12% loss in 6 months. It is not an entirely reversable loss either.

    I found mirena coil the best of all options, and you have a right to get it installed with anaesthetic if your find speculums far too painful, because mirena will be more painful than any smear check when it is inserted in to the uterus. That is the hardest part to get through pain wise.

    The best time for mirena to be installed is when you have any lap op to diagnose endo. It then tkes 4-6 months to settle and reduce your periods to spotting or stop them alltogether. No having to remember to take pills each day, no periods, no period pains, no PMT, not fluctuating hormones, saves a fortune in tampons and towels and gives you back quarter to half a year every year period free.

    Most endo ladies have a period 1 week in every month, for many they last longer than a week,sometimes 2 or even 3 weeks every month, if you multiply that by 13 periods a year plagued with everything bad about periods and endo, you can perhaps see just how liberating the mirena coil can be in giving you back so much more period free time. It doesn't suit everyone, but for the vast majority it is godsend, and for those who don't get on well with it and don't find an improvement in period bleeds then it can be removed. You will read some bad experiences with mirena online, but when well over 10 million have now been installed world wide the number of failed cases is actually minute. There are a lot of very delighted mirena users on this forum. as well as a few for whome it didn't work out.

    No one methods suits everyone, and thankfully there are lots to try, and where one doesn't suit, a slight modification in ingredients may be all that is necessary to find one that works fine, so you my need to try a number of ways before you find the one for you.

    The other types of meds we endo ladies have is pain killers (and laxatives to combat the constipation caused by IBS and endo and the pain killers.) Most common will be the regular over the counter pain killers like nurofen and paracetamol, then the prescription strength ones like naproxen and diclofenac, Cocodamol etc, moving up to the opiate based painkillers buprenorphrin, tramadol etc

    which are far less widely prescribed because of the risk of addiction.

    and for pain beyond those opiate based meds you should be going to A&E for intramuscular pain killing injections in the bum or thigh.

    There are also nerve blocking procedures and anti-depressants (which can be used as anti depressants) but are also used sometimes to stop pain signals. Depending on the root cause of the pains.

    Not a comprehensive list but should give you some ideas about the most commonly used ways to handle the battle with endo non-surgically. Sadly no magic bullet yet invented.

  • This was really informative, a great post and one will I will be bookmarking for future reference.

  • Thank you for your reply.

    I found that very helpful myself. I have an appointment at specialist centre tomorrow and Zoledex has been mentioned and I have looked into it but not as in depth as that.

    I am at a bit of a cross roads as I have had a variety of progesterone treatment and they don't agree with me. I bleed constantly. Get acne feel very bloated on them. And I got migraines with the mirena which never had before not even with the combined.

    Which now stops me from having the combined.

    I find that tramadol is the only pain killer that helps now.

    Awaiting for a plan tomorrow

    But your information was very useful.

  • Gemz has anyone ever discussed excision surgery with you? X

  • In my experience GnRH inhibitors caused my migraines to go from one every month to 3-4 a week. Having those injections was a really bad decision for me but i trusted my consultant who kept telling me it would get better. However my GP was telling me the opposite, she wanted me off the injections and her argument won me over in the end.

    Unfortunately although i stopped the injections after 4 months, even 5 years later i get the constant migraines. I now have to take an anti-epileptic medication daily to try and prevent them from occurring.

    There was one good thing that came out of that situation though; when i said to my consultant that i no longer wanted to continue with the injections (she did get angry that i was going against her advice) it felt like i had taken control of my body back. Up to that point i had let them do what they had liked as i was under the impression that they knew best.

    I would be worried if the coil gave you migraines and that hormone level is so low what might happen if you try this injection.

    I know your appointment was today and i just hope it's not too late

    Victoria xx

  • Impatient post is fantastic. As you mentioned xoladex I thought my experience may help. I finished xoladex treatment five months ago along with HRt and would only recommend it only as a last resort. I wasn't given a choice really. I had five large fibroids located on the outside of my womb in a place that was inoperable it was that or a hysterectomy. It worked in regards to the fibroids and the endometriosis I have seen a bit of improvement. I am sure that xoladex side effects are not the same for all people but my experience was awful. H.R.T helped a lot. The physical symptoms weren't too bad headaches nausea and vomiting but the worse bit for me was how it made me feel like a completely different person. I suffered from anxiety bouts of depression mood swings I was so so angry. I hardly recognised myself. If you do take this and feel like me don't wait until the next injection speak to you GP or consultant about H.R.T as I was back to my old self really quickly. I was diagnosed with stage 4 endometriosis of the bowel and womb at 22 and I had a laser laparoscopy not long after ( it no longer seems the operation of choice but it helped me). I have been on a contraceptive pill called Yasmin with no breaks ever since. I still get pain and take diclofenac regularly and movicol from time to time it's never got as bad (touch wood) as it was back then oh I am now 39. Best of luck and if you have any questions just ask.. x x

  • Thankyou marszy31

    That's helpful I'm going to see the consultant for treatment options in sept then transferred to endo specialist for op as uterus is stuck to my bowel

    How do you find the Yasmin ? Do they help have you had any surgery since your last one in your 20's ?

    I'm hoping to be put on something that will calm it down as was told it was quite extensive

    Thanks for your reply :)

    Lisa

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