I am on my second injection of zoladex, yet no improvement on my bleeding symptoms...each and every doctor say different reasons. Help!!!

I was for two years on progesterone pills, stopped my pills in December and went on to zoladex. My first month was heavy bleeding on the injection...and now second month too having like a breakthrough bleeding on and off nearly everyday. My gynecologist. Says it the breakthrough bleeding from the progesterone. But I am finding it hard to understand how long will this progesterone effect stay in the body. My gp says this particular injection is only 3.6 mg....it will take time in the body to settle. The big question is how long. Another gp says you can bleed on zoladex too. Some says it's my endometriomas that are bleeding. I don't know whom to understand..but I am fed up of this bleeding. Please help me.

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  • Hi Neal07

    Sorry to hear you are still not feeling well, and apologies for not going back to you on the question post I wrote. I thought it would be easier to answer you on this post.

    I went to my gynae last Thursday and explained that I actually felt awful on the zoladex and I had bleed for 6mths. He said some woman do as everyone is different. I explained I had very heavy bleeds with lots of clots, and felt like I was going to faint. The options he gave me were to try a mirena, have a contraceptive monthly injection, radical surgery to remove my womb and ovaries or try Tranexamic Acid to reduce the bleeding. I said I didn't want any option as none of them are appealing. I've decided to try the Tranexamic Acid to reduce the bleeding but he didn't give me anything for the pain. Feel like I haven't got anywhere.

    Are you taking any hrt at all? Zoladex does settle down for some people so it's worth trying it for another month and then seeing how you feel. If you don't feel any different don't have to continue. I only continued as I was concerned he'd say I was cooperating if I didn't, and wouldnt help me. When is your third injection?

    Sending you hugs

    Angela XxX

  • Hi Angela

    I'm sorry you're in such a bad state - its awful when doctors don't help as much as we'd like, especially when we wait so anxiously for our appointments.

    I'm sorry Zoladex didn't work for you - that's a real shame. Did you take HRT with it? This can make it less effective as the endo is still being supplied with oestrogen. It seems odd that you bled all the way through as you shouldn't have been ovulating or bleeding - personally, I'd ask for a referral to a specialist for a more informed second opinion. Unless there were other factors involved, it would seem that the zoladex didn't shut your ovaries down properly which is strange.

    I would disagree with your gynaes list of options - first and foremost, I would say your best option is the pill. I've been on every hormone treatment going now, and I find that the pill is the only thing that really controls my periods ( when you find the right one) without having a serious impact on many other factors ( mood, weight, headaches, all the other hormonal issues). I would not consider a full hyst a cure as many women have their endo return after this, especially if they take HRT but even if they don't.

    I've had the mirena coil in since August and it's been torture (the only women I've heard be positive about the mirena are those without endo - I'm sure some endo sufferers get on with it but there are far more problems than some gynaes will acknowledge), and I had an awful time with depo provera and implanon - it didn't help my symptoms and I had awful migraines, nausea, weight gain, mood swings etc.

    You could try the trans acid to reduce the bleeding but, unless theres a reason not to, I would personally tricycle the pill. I'd also ask my gp for some proper pain relief and referrals to an endo specialist and a pain specialist who specialises in chronic pelvic pain so you can get on to a proper regimen. A decent endo specialist performing excision surgery followed by something like the pill and proper pain relief would be your best plan of action - be very wary of gynaes suggesting hysts until all possibly avenues have been exhausted (and frankly, even then - the specialists I've seen have said categorically that they don't do hysts unless the main problem is adenomyosis as its not got a good enough prognosis for such major and irreversible surgery).

    If you don't already, get yourself an electric heat pad - its one of the most useful things I've ever had for pain relief, it works better than the mild painkillers like paracetamol and ibuproften for me (although I've been on morphine for 9 years so I don't really take those anymore!). You might also want to look at things like a tens machine or even accupuncture, homeopathy, dietary changes, or the pain management courses that are run by quite a few specialist pain clinics and endo centres. I've been through all those and personally I didn't get any benefit but I know lots who have.

    Hope this helps a bit - I know how it feels to be out of options as I've now tried everything I can and things are worse than ever. It sounds like you've got quite a lot left to try and I'm sure that decent pain management would make a big difference to your quality of life.

  • Hi Cupcakegirl

    Thank you for taking the time to reply to me, I really appreciate it. Yes I was extremely anxious last week when I saw my gynae, as I was really worried he would discharge me when I still feel awful. It has taken me 20yrs to get diagnosed with endo and I guess if I got discharged I'd feel like I was back to square one.

    I took 2.5mg of Livial after my 2nd injection as the usual side effects of zoladex like the usual sweats and difficulty sleeping. I saw my gynae before my 3rd injection and said the side effects were getting unbearable and I was exhausted through lack of sleep so he told me to take 2 Livial tablets. Not long after I had an extremely heavy period and flooded my car seat, so I got an emergency appointment to see my gynae. He said to continue the Zoladex but to take Prempak-C as HRT instead, so I did for the last 3 months and continued to bleed. My 6th injection was 5wks ago and I've finished taking Prempack-C 2wks ago. I'm still having sweats and difficulty sleeping. I really wanted the Zoladex to work and I wonder if it's the HRT that I took which caused all the bleeding. In your experience do you think this is possible?

    There is no way I'd consider a hyst! I told my gynae that a hyst isn't a solution and doesn't cure endo as many poor ladies continue to suffer. I don't think he liked it when I said that but it's the truth. I've never taken the pill and don't really want to if I can help it. Without meaning to sound vain I don't want to out any more weight on, have mood swings and suffer emotionally.

    I'm sorry to hear that the mirena hasn't worked for you. Are you going to have it removed? I've heard about so many endo ladies who have had bad experiences. My gynae tried to convince me to have a mirena at the same time as my lap but I said no way. He told me that people only share bad experiences on the internet but in my opinion there are way too many bad experiences. I absolutely value the advice of other endo suffers, as we're the ones who experience it first hand.

    My gynae said to try the depo provera injections if the trans acid didn't work but I'm not keen on that either. How long did you try it for?

    I'm going to try the trans acid to reduce the bleeding when I've got my period but I know that this is not going to be enough. Are you taking the tricyle pill now? I think this is similar to the Prempak-C HRT that I took with the Zoladex. I feel quite disillusioned to be honest. I had a lap in March last year when I got diagnosed. I got put on Zoladex in July. I still feel in pain and I'm still having heavy periods. My gp isn't very helpful hence the long time until diagnosis. Did you just ask your gp to refer you to the pain management clinic or can the gynae do this? My gynae is better than my gp.

    I do have a tens machine my mum bought me. I haven't heard of an electirc heat pad though, where do you get those? Have you tried the endo diet or homeopathy?

    Thank you again for taking the time to reply. You're right, I don't think I'm aware of my options enough and feel at my wits end. I'm so sorry to hear that your pain is worse than ever. Is the mirena your last option? Would you try Zoladex again?

    Angela XxX

  • Hi Angela, it wouldn't let me reply before so I sent you a message!

    I'd definitely consider the pill before depo as its much milder - unless you have any health problems that mean you can't take the pill, it's the option that causes the least side effects. I put on three stone in three months on depo but the pill doesn't cause me to gain weight - I just get bigger boobs. Then again, I lost loads of weight on zoladex and my boobs, so it's swings and roundabouts - I have clothes size 6-14 in my wardrobe and bras from 32B to 36D. It's bonkers. I'm putting weight on with the mirena so that's another reason to have it taken out - apart from the pain, violent temper and depression!

    I've sent lots of advice in the message but let me know if you have any questions.

    X

  • Hi Angela, thanks for replying.....endometriosis seems to be like a never ending chapter...there's no going out of it yet. I started to bleed from yesterday,heavy. This morning I did go and see my gp. He said he's not worried...he asked me not to think about it...as if bleeding is a thought and not real. I am trusting him at the moment. He also told me he knew few women who bleed all 6 months on zoladex like you. I might be another one to add in the list. No, I don't take hrt as I don't feel any side effects with it. I kept on asking my doctor if zoladex is still working group in me even though I am bleeding..he said yes.

    Why are still taking tranexamic acid? Are you still bleeding? Mefanamic is said to be for pain. Take care xxx

  • Hi neal07

    Yes endometriosis is never ending it seems. I'm glad to hear that you've seen your gp today.I do think gps get immune to people being ill and they don't really understand endo. How can you not think about bleeding heavily?

    Are you bleeding like a normal period and are you in pain? I bled heavily for a full week each month. It is interesting your gp said that some women bleed for 6mths but he isn't concerned. It's good that you aren't suffering from the side effects. I still have sweats and trouble sleeping 5wks after my last injection.

    My gyane prescribed trans acid to help reduce the bleeding each month. It won't help with the pain but it will help with the clots and the blood flow. I'm not bleeding consistenly although I have had spotting. The trans acid is to take when I start my period. I have tried mefanamic acid from when I was 16 but it doesn't do anything to help the pain or blood flow any more and hasn't for a very long time.

    Sending hugs

    Angela XxX

  • It can take a while for things to settle down on zoladex and progesterone can take a long time to get out of your system - I had two jabs of depo provera and it took 6 months for my cycle to return to normal. If you don't have any improvement by the time your next zoladex is due, maybe you should postpone the treatment until the progesterone is out of your system? I would speak to your gp or gynae about this - it sounds like your hormone levels are not yet back to normal and the zoladex might be making that worse. Having been on all these treatments, that would be my guess but I could be wrong.

    Id be very surprised if the bleeding was caused by bleeding endometriomas since they'd be bleeding into your pelvis, not into your womb! Sometimes I wonder if these doctors remember female anatomy!

    I hope things improve soon

    X

  • Just to add, if you are taking HRT, I'd speak to your gp about stopping, at least until the bleeding stops as it would just be confusing the hormone situation further.

    HRT is often prescribed with zoladex even even it's not needed - it's adding back in some of the oestrogen and therefore making the treatment less effective. If you're on a 6 month course, you shouldn't need it to protect your bones - it should only be needed if the side effects are so unbearable that treatment would otherwise stop. I stayed on zoladex for two years with no hrt as the docs didn't know what else to do with me. It was a huge mistake, but a short course without HRT should not cause any lasting problems.

  • im having the same problem with zoladex. ive just had my second injection and i feel like its only made things worse. i didnt have any other treatment befor the zoladex but the bleeding has got bad and the only thing the dr says is that i have to gave the whole six moths of injections wether its making me more ill or not i just have to stick it out.

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