Hi ladies, i have only been told today that i have endometriosis, last week i had my first lap to remove a large cyst on my overy they also

Removed scarring tissue from my fallopian tubes, i was told i would need to go to my gp for a injection once a month for three months.. That was it... My doctor had to faf trying to find out when i needed it and what i needed, i have been and had something beginning with Z but cant remember the name, it was an implant i felt it go in, and then was told by my doctor that i had endometriosis but he didn't explain what it was what it means for me my partner future babies or anything i don't have a clue what's going on and the doctor who sent me for surgery said he would see me in three months today i have received a letter saying that i have to go and see him in three weeks time? Why? Mean while in still in loads of pain with my left overy and taking that much medication I'm close to overdosing because i need this pain to go. I have a 2 year old little boy that needs me everyday at home to play with him and make sure everything is tidy but i just cant function. And i don't want to be on really high pain medication for the rest of my life... Please can someone help me in so confused and I'm worrying and i don't know what about. I am also 21 with polycystic overy syndrome and a bycornuate uterus

6 Replies

  • Please don't worry u won't be high on drugs all the time I now have a nine year old & I was told I had endo 13 years ago, polycystic overy 10 years ago & no Adomeniosis this year. I've had 6 Laps & going in for another one on 5th December.

    I get it 100% but u have good years not days & bad years. The endo grows back. The implant is to reduce periods so the endo won't come back as fast. Right now I'm on codeine but that's because I need another op & it's the only way I can keep going. For the last two years before my op b4 no pain. Good luck u will do this endo picked woman for a reason we r strong x

  • Zoladex if it starts with a Z.

    This is a very powerful drug, from a group of drugs called GnRH drugs. None of them will cure endo , this is not a miracle drug in that sense.

    It is toxic for pregnancies, and not a contraceptive either and it renders BC Pills useless, so while you are on it if you decided to go on it you will have to keep on using condoms throughout and for 4 months after the last implant because ther residue of the drug remains in your body even when there isn't enough of it to cause you side effects there could still be enough to cause damage to a pregnancy. But it does disappear and is not in there forever. Just have to be careful. Some ladies have ended up pregnant while on it and their babies are fine, some have had deformed babies and many have lost their pregnancies.

    So getting pregnant while on it is to be avoided. not that you will want to have sex while on the drug anyway.. it reduces the sex drive to zero among numerous side effects.

    The side effects can be severe and yet some ladies cope okay on the drug, personally I was bed bound for nearly 4 months on it, and my reaction was ghastly and I should have stopped much sooner, after the 1st month in hind sight.

    But at that time I really didn't know much about it and was not in any fit state to go online and do my homework either, so I beg you do not start the treatment with zoladex until

    you and your hubby have prepared yourselves for what could happen in the weeks and months ahead and have contingency plans for taking care of your toddler, if hubby is at work, and you are too unwell at short notice for looking after the little one.

    If you have anyone from your son's aunts, uncles, both sets of grandparents on standby 24 hrs a day to come and help, or to have him stay with them for a few days, and you can start preparing him for sleep overs with granny and without you, or have granny come stay for a while to help out if needs be.

    This won't be all the time, but there certainly are days when you may be too forgetful of zonked out to remember to feed and care for yourself never mind the high demands of a toddler. And from day to day you have no idea when you will feel great, good, poor or dreadful.

    Let everyone in your caring circle know about the side effects and what to watch out for. Especially regards really bad moods and anger issues which can crop up much worse than any teeneage tantrum, and are not nice for your loved ones to have to put up with and you will not be able to control it much or stop it much and exhaustion doesn't help either.

    The point of taking the drug is to improve your quality of life and it is a lottery whether it does or doesn't, and that it could make things much worse than simply coping with pain killers and periods for those same few months.

    When you do have a pet or a child(ren)...it is not a decision to be taken lightly. You do need back up help on hand. If granny lives 200 miles away that is not going to work.

    If help is round the corner or moves in with you that is the immediate sort of help you will need access to at times.

    The drug works by flooding the pituitary gland in the brain with sex hormones that causes it to overload and shut down in a couple of weeks, this stage is called the flare stage, and while it happens it will make the endo pains worse and cause bleeding too but the super boost of hormones overloads the pituitary gland and causes it to switch off and shut down,

    that shuts off your body temperature regulation..hence the hot flushes/ freeing chills throughout the day and night, which causes so much poor and interrupted sleep that you have to nap when you can through the day too. this is what leads to exhaustion setting in...and irritability and mood swings too.

    But when it is shut down, it stops sending signals to the ovaries and they too shut down and stop sending hormones to the endo and womb causing them to stop bleeding and this state is the pause in bleeding which is what causes pain so should leave you endo pain free for a while.

    But the drug can cause other pains, I think these mainly happen when blood pressure rises and then you get pains in mucles and bones and veins (usually in the legs) but also headaches too, blurred vision, heart palpitations, panic attack like symptoms, itchy skin, nausea, loss of appetite, forgetfulness and so on.

    The list of side effects is lengthy, you make get the odd one or two, you might overloaded with several at the same time. Some ladies take HRT to try and calm some of the side effects down, but that doesn't stop all of them.

    Now I am not saying all of this will happen to you, but the fact is it might, and none of us know how we will react to the drug till we are on it. If you do decide to go ahead then preparations in advance always help. Informing those in your circle of immediate family and friends is essential so they know what to expect too.

    The GnRH drugs are cancer drugs, They are powerful drugs and once you have an implant in the tummy then there is must stay for a few weeks even if 1 implant is more than you can cope with, you would still have to get through the consequences for about 6 weeks or so even if you decided to quit and not have the next implant.

    Deciding to stop is your choice. This is not a cure for endo, so if your quality o life is worse on the drug then stopping is the best thing to do. and you should see side effects easing off after a couple weeks from the next implant date if you had had it and decided not to.

    In a tiny number of ladies, the ovaries do not wake up again afterwards. it is very rare. The usual restart time average is 5 months after a 6 month course of zoladex, some ladies reactivate their ovaries much quicker than that, while some ladies take a bit longer, but the average time for ovulation to restart is 5 months. That gap between stopping the drug and ovaries waking up is the best time because you are drug free (almost) and not having periods or period and endo pains.

    Is it all worth it, a couple of months respite.. In my view no it isn't.

    But there are ladies who have had a much less dreadful time of it than I experienced and they seem happy to stay on the drug for the full 6 months.

    But then what do you do after that when you are back at square one. and the endo is active again.

    If you have a cyst causing pain then it needs to come out.

    If you have an ovary that is stuck with adhesions to another part of th body then it need to be detached, and any endo needs to be removed.

    In some cases it is best to lose one ovary itself as I found out. I lost my left one in surgery and it was the best relief ever. I have stage 4 endo, had endometriomas on both ovaries, bicornuate uterus, endo on/in bowel and bladder and just about everywhere.

    I still have my right one and it now causes me gyp, but on the left side no pains at all....bliss.

    Use the search box on the green bar at the top of the page and type in zoladex or gnrh or prostap or lupron or decapeptyl which are al names for GnRH drugs. There are plenty of comments about people's experiences on this forum alone, but thousands more world wide on google. Do your homework and discuss carefully with all your support team who you may need to call on for help with yourself and your child if needs be.

    You may not need help, you may cope wonderfully, but just incase it isn't the miracle experience for you that it is for some lucky folk, you do need to have helpers on hand.

    As for the bicornuate, that doesn't cause pains or make endo worse. It can be an issue carrying a pregnancy.. but as you have manage one already it won't be a severe bicornuate so on that score there is no reason to worry that you wouldn't be able to have another baby in due course.

    I also have a bicornuate as do a handful of ladies on this forum. I can't carry a pregnancy in mine, but it really depends how far the womb developed before the creation process came to a halt.

    Best of luck researching and coming to a decision. You can start and stop it too. It is your choice..not like antibiotics where you must finish the course of tablets, with these GnRH drugs you decide what you can cope with and whether enough is enough. Oh and it doesn't matter when you start the implants.. if you need to wait a month or two before you can have home helpers on hand for your kiddie, then wait.

  • See before my lap i was on the strongest tramadol you could have codine, paracetamol and dicolfeniac at the moment im on dihydrocodine high ibruophen and paracetamol, which barely touch i mean the tramadol only took a tiny bit of the pain away my worry was i was blacking out before my lap and my partner works full time so for 9hours a day i am on my own with a toddler, its hard to think that i will have this pain for the rest of my life. Also can i ask up until yesterday as that's when we was told, i was keeping my self dosed up with pain medication so that when the pain attacks its got something to fight with straight away, but should i just take them as and when needed or keep myself dosed up im really confused.

  • Thankyou so much Impatient you have given me more information that my doctor did i have been explained anything by anyone in the medical profession so far so your information really helps me try to understand what is happening and what to expect. And thankyou clemo1

  • Not so much about Zoladex but endo - there is a brilliant book called Endometriosis for Dummies which will answer every question you have

    Remember though that this disease is different for everybody - eventually you will learn about 'yours' and how to deal with it in a way that suits you

    Good luck - it might feel like it at the moment, but it really isn't the end of the world xxx

  • Thankyou Hun, I'm just try to push through it at the moment so that my son doesn't see me in pain and things stay as normal as they can possibly be, but i mean walking a 5-10min journey to the local shop is just agonising for me. I'm just trying to figure out what i can and cant do at the moment. Its just strange, just struggling to get my head around it all

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