Hormone treatment

Hello ladies.

I am seeing my specialist on the 16th. I have had an MRI and I am going to get the results at my appointment.

Can any of you recommend a hormonal treatment that has given you some relief? I can not take the combined pill and I wouldn't touch the mirena again with a 10 foot poll!

I have had Endo for 20+ years. My pelvis has adhesions and it may be too difficult to do surgery ATM. I also have possible adeynomysis and chocolate cysts.

I have never tried any GNRH medicines. Are these as awful as they seem?

I would really value your opinions.

Thank you

Barbara

P.S It was suggested another option would be depo provera injection as I can have this long term ?

13 Replies

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  • Hey,

    I have mild endo but with severe pain and possible adenomyosis too.

    I had six months of zoladex at begining of last year. Do not expect pain relief until month two. The first month was hell and there truly were some awful awful days. BUT the pain relief was incredible. It gave me my life back after six months off work i went back full time. It does give you some horrendous sixe effects and you need a good support network around you but if it disnt give long term damage i would have stayed on it forever. Make sure you do lots of research so you know what you are letting yourself in for i found as the key and i took a good aray of vitamins and supplements to support me. I also gave up wheat and gluten at the same time so that may have helped.

    I am now on the three monthly injections of which i have had two. Im not liking it anywhere near as much as zoladex. My endo specialist consultant explained zoladex is like a big hammer in terms of pain relief but you get lots of side effects, depo is not nearly As good for pain relief but far less side effects.

    I have found i still am having side effects, plus the pain relief is not as good. I am also putting on weight and very hormonal/tearful.

    Im in two minds weather too go without anything for a while! I cannot take combined pill either and been on mini pill most my adult life.

    I hope this has helped a bit. Feel free to pm me any questions.

    Good luckxxx

  • Hi,

    I have been on a number of hormonal/anti hormonal treatments for my endo and possible adenomyosis.Also have dense adhesions and trying to decide on hysterectomy or not.I was on Decapeptyl for 2 years ,for 6 months without HRT,then the rest with HRT.I can only say that for me,it was a miracle!I had monthly injections and for the first month still had pain,but much less.I had no bleeding at all and after the 2nd injection I was totally pain free - not even a twinge.For me,it was as if the endo had gone.However I have a very complex medical history-CFS and Meningitis- so my bone density was measured and it was found to be lowered( not quite osteoporosis) and I was immediately taken off the Decapeptyl.Within a few weeks,even before my periods came back I was in agony and ended up in hospital with burst ovarian cyst and urinary tract infection.Dont want to scare anyone as GNRH agonists do work really well for pain relief,but they are not cures and when you stop back the pain comes with avengeance.Re side effects I noticed very few,but I am in late 40s so maybe my hormones are running down anyway.I had a few hot flushes,but actually felt much more balanced emotionally on the Decapeptyl.

    I also had synarel which comes as a nasal spray-this was my first GNRH agonist and I opted for this as it can be stopped immediately if you react badly,unlike a monthly or 3 monthly jab,which is in your bloodstream right away.It did not work so well,as I suppose the dose was less,but would be worth trying if you are nervous about side effects.Personally I found the pain relief more than compensated for the flushes and would go back on either if allowed.

    I am now on Depo Provera,which is effective in stopping periods,but has much less pain relief -but it is the only treatment they wll allow me now,until I decide whether or not to have total hysterectomy(which I don't want as it is not a cure)

    In the end we are all different.You hear lots of scare stories,I suppose because most ladies posting have had bad experiences.hopefullly you can try a GNRH agonist or Depo and get some pain relief -It certainly was almost miraculous for me.

    Do let us know how you get on.Sending you a hug.

  • Thank you.

    I'm quite scared of the GNRH as I've had a couple of episodes of clinical depression.

    I wish there was a miracle answer for us all. I'm certainly fed up with the severe cramps 9 days before my period not to mention the back and leg pain.

    Lots of love

    Barbara

  • Hi Barbara,

    My heart goes out to you and every other lady on here.So much pain,it is not fair,But at least there are some drugs to help.What about asking your specialist for a trail of the Synarel nasal spray-it is also a GNRH agonist,but the advantage is that if you experience any bad side effects you can just not take the next dose and no more of the drug will be in your system.I had this as first option as I also have had clinical depression and was worried at the thought of a medical menopause.Depo provera may be kinder as it makes you in a pregnant state rather than a menopausal one.

    We seem to be in a similar position?I have been putting off total hysterectomy for years and now have adhesions and endo all over ,so am waiting for a general surgeon to try tackle adhesions first.

  • Thank you daffodil

    I have never heard about the nasal spray. Did you try it in the end?

    Our situations are very similar.... Miserable isn't it?

    Thank you again. Much appreciated. X

  • Yes -I had the nasal spray for 2 lots of 6 months,without HRT.However it also coincided with me nearly losing life to Meningitis in 2008,so there was a period of 5 weeks when I was on life support and not talking the spray.I was afterwards taking a lot of pain relief and Gabapentin for neuropathic nerve damage,so it is difficult for me to sayhow much relief was due to the Synarel.I think the Synarel spray was relatively new,but I found out about it from an Endometriosis UK factsheet -well worth sending for from their website.I was a member then ,so factsheets were free but you can probably download them now.Actually am going to have a look tonight.Only reason I am up so late is cant sleep for the pain,so I find computer takes my mind off it a bit.

  • Good morning daffodil.

    Did you manage to get any sleep at all? I've also been in a lot of pain as my period is due late next week, I've also got the added problem of nausea. ENOUGH ALREADY!

    I am sorry you have had so many medical problems. I really feel for you.

    X

  • Hiya, Didn't manage to drop off till about 5am,then slept through till noon lol! In a very bad sleep pattern-I think dihydrocodeine makes me wide awake?What pain relief do you take?Some can make you very nauseous.You can get a travel sickness pill over the counter -cinnarizine-very good for nausea.Or ask Gp for something to help as nausea is really horrid.Ginger as tea,capsules is good for nausea.

    One thing my medical problems have taught me is that we can either moan about them,or we can use our experience to help and support others.This is a wonderful forum,just great to know we are not alone.Endo is not a subject you can talk easily to people about,so its good to connect with folk on this forum.

  • In also scared to take them for the same reason of depression. I have to take morphene for the pain but doesn't suit everyone! Such a pain in itself that there is not much they can do or so they say lol xx

  • Hi Barbara

    Sorry to hear you're going through it so rough I really hope things get better for you. I have been on depo and for me I had hardly any Pain and no bleeding at all. It worked well for me but I couldn't handle the weight gain. I ballooned from a 12 to a 20 in 6 months and I was on a slimming world diet at the time lol still can't shift the weight three years on so For me that was a no no. But I'm back to trying to find something else that works for me. If nothing else works id have to go back to depo. What else have you tried ?!

    Danni

  • Hello Danni.

    Thank you for your reply.

    It was good that that the depo worked well for you. I think I will try it. Shame about the weight gain issue though!

    I have tried the Mirena twice, combined pills (can't take them anymore due to migraine) I've tried the mini pill and had constant non stop bleeding.

    Many years ago I was on Danazol. Quite a good drug but made me get facial hair!

    Have you had Endo for long?

    Barbara x

  • Blimey, Danazol, there's a blast from the past. That was an AWFUL drug. I grew a moustache much to the hilarity of everybody around me but more depressingly my voice dropped and stayed low. Bloody endo. Can't even sing the descant in the Christmas carols anymore :(

  • I found the drug ok apart from the whiskers!

    My belly is big and with the facial hair, my inpression of Santa was pretty impressive!

    If only we could all find treatment that doesn't give us grotesque side effects. Bloody Endo !

    X

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