Endometriosis

I have had endo for years now ,am so fed up had laparoscopy 2 yrs ago they said i had pollops on my womb which they removed but since then been hospital because i had green discharge,had tests for infections,but they were clear,so they advised contraception,which i tried the depo jab which took me 9 mnths to recover from.they have have basically said now that i need to try the coil,which i really dont want.i am in constant pain my bladder feels full all the time and they wont do another laparoscopy .can anyone help or anyone in simular situation.

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  • Hi Kagz

    I had endo for 9yrs and was in and out of hospital every month, I was told I had IBS for all them years and I was in so much pain I was 5stone 10lb at the end when they finally discovered endometrosis. I was fitted with a mirena coil which made me worse I went from being in pain 10days of the month to being in pain everyday. Even though I didn't experience heavy bleeding it was more the stomach cramps untill I came on my period which then I was fine and could then lead a normal life untill the following month. I had endo around my bowel,bladder,pouch of douglas,several fibroids and a cyst on my ovary that was ready to burst. I kept the mirena coil in for a year when I just couldn't take anymore so I had it removed and all the endo burnt out. I'm under a very good consultant in Manchester and I now have the Prostap Injuction every 3 months which puts you through the menopause and being only 34 yrs old with no children it's not really good however soon as I stop the injection the pain comes back straight away . I hate the side effects of the menopause but I rather have the menopause than the life I had for 9 yrs previously and at least if I do decide on children I can stop taking the prostap and try for them. I wouldn't recomend the coil as it didn't work for me but it might work for you? You have to think how much is the endo ruining your life ??? If you can't stand it anymore you need to have the coil or the prostap injection.

    Hope I helped a little bit x

  • thankyou for your reply im 36 an i also have ibs to which i ha ve had for years,i still dont no whether i am going to try the coil or not ,i am in so much pain at the moment havent had a period last month, so im suffering from it now,My breasts are really sore and swollen an am so tired all the time. when i was in the hospital last time to see consultant they offered me an injection that will shut my ovarys down an put me on hrt but when i had a pregnancy test done it showed that i was boarder line which was mad, so they never went ahead with it.is that what prostap is?

  • HI,

    Im 32 and have suffered with stage 4 Endo since i was 24 and have had 5 Major Surgeries.

    Everbody is different and my outcome was to have Hysterectomy and Bilateral Salpingo Oopherectomy which i hope you never have to do and im not in any way advising you to have that surgery .

    I agree with Jubbly36 , the Implant gnrh analogues , Prostap , Zoladex etc worked amazingly well , stopping all pain , although putting me through menopause (Hot flushes , Night sweats are all better than the Endo pain) , however they are not long term and think most doctors take you off them after a while

    i tried the merina coil, depo, contaceptive drugs , Nothing worked apart from the zoladex as it stops Estrogen supply ....... Estrogen feeds Endo but we need Estrogen in our bodies (as im now finding out ) , hope this helped x

  • hi thankyou for your reply im 36 and dont no what stage am in but feel alot worse now than i did,having intercourse hurts but its the days after that are the worsed think my bladder and bowel are affected,so need to go bck to doctors,wot is zoladex? and your message really helped to give me more info on endo x

  • Hi -

    You hear a lot of horror stories about the coil, but for me it's been great. I had it put in five weeks ago, and I already feel better than I've felt in years. I know it doesn't work for everyone, but depending on your situation, it might be worth a try.

    The coil is good at stopping endometriosis growing further by balancing your eostrogen with progesterone. It is also effective if you have a very overgrown endometrium or polyps (I had both of these). However, if you're concerned you should definitely ask your doctor if there are alternative treatments they'd recommend.

    I had mine put in during a hysteroscopy, so I was already anaesthetised and it didn't hurt at all. Other people say it can be uncomfortable while they're putting it in, but this is worth it if it takes the pain away afterwards (as it has for me). Once it's in, you don't have to do anything at all, so it's absolutely no trouble as long as it is correctly fitted and is the right treatment for you.

    I hope you manage to find something that helps you. Good luck.

  • hi thanks for your comment and yes you hear so much about the coil and most of it is negative but think i need to bite the bullet an try it,because just carnt be going like i am.x

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