Newly diagnosed with Stage 4 Endometriosis and trying to stay positive!

Hello everyone

Firstly can I just say how great it was to find this forum, as I don't know anyone with experience of endo! My story is that I was diagnosed with Stage 4 Endo last Friday after my first lap. I was shocked that it had gotten so bad. I'd been having classic endo symptoms for years and been to so many doctors but still no-one had suggested endo.

I'm 28 and last November I got married. My dream is to have a family. The consultant said that despite the endo both of my tubes were fine. However he did say that because of the seriousness of the endo it could spread, and if we are thinking about having a baby we shouldn't wait. My consultant has prescribed me a 4 month course of Zoladex and I have to have another lap in 3 months. We can't start trying for a baby until after all of my treatment.

All I can think about right now is whether we'll be able to have a baby, when I really should be concentrating on myself and my recovery. It's like I don't even care about myself - all I care about is conceiving. I was even thinking of refusing the Zoladex and second lap so we can start trying straight away! Crazy huh?

Anyway it would be great to hear from any of you lovely ladies who might have had similar experiences.

Thanks xxxx

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10 Replies

  • you do not need the zoladex . If you are having another lap for endo so soon, then the zoladex will not help at all. If you can bear to get through 3 more periods (and yes i know they hurt0 but you have made it this far !!! - then by not shutting down the endo it is much easier to locate in the next op. Locating and removing active endo is easier.

    My guess is you have been recommended zoladex as a means of perhaps giving you some relief from the pain - BUT and it is a huge but - the drug is not without considerable consequences in terms of side effects. It stays in your body for 3-4 months after you have your last implant and while it is in your body it is not safe for a pregnancy.

    It also shuts down your ovaries and on average - this takes 5 months to wake up - which delays opening your window of trying to conceive after the next op.

    so while the prospect of have a handful more painful periods is not fab, in your case, knowing your next op is imminent, and that you have every intention of cracking on with trying to conceive asap after the op, steer clear of the zoladex for now.

    There is no reason why you cannot try it at a later date should you feel the need to.

    It doesn't cure endo it buys you a bit of time pausing endo, which is not of benefit to surgery, and certainly not helpful trying to conceive.

    There is some suggestion it may delay the regrowth of adhesions, but they will always grow anyway and you have another op ahead (and they can be cut back at each op.)

    best of luck with op No.2 and the baby making task ahead.

  • I'm in a similar boat. Have just had my second surgery and was given zoladex after first surgery. I have recovered better without it second time round and it didn't even help as I had cysts back before the zoladex had ended. My cycle came back about two months after it had finished. Whilst it offer relief from periods that was the only benefit I can see of using it. If I had my choice again ( and I knew nothing when I had first lap ) I would not take this drug. The side effects are unpleasant and benefits are minimal.

    I have both tubes still and I have now been referred for ivf as I only have one ovary now and also have adenomyosis - 6 weeks to wait. I am glad I have waited to have second operation. I'm 35 and also newly married. If it's meant to be it will all work out - I hope!

  • Hey, im exactly the same as you. Was diagnosed after lap in dec stage 4 endo. Started zoladex this week and hope to have next op in 3ish months.

    I have been married 2yrs this april and also trying to conceive without sucess for 18months. So just waiting waiting waiting to get this next op out the way so we can start trying again. I considered stopping everything to keep trying but drs said it wasnt a good idea.

    Hold on in there, we will get to be mummys in the end. Msg if u ever need a chat xxx

  • Hello Sades! Can't believe how similar our experiences are! Thanks so much for the advice and encouragement.

  • Hi, sounds like we are all in the same boat. I am 30, luckily I have a little boy who is nearly 5, but I am desprate for another baby and have been told i wouldn't conceive at present as everything is so stuck down inside. I was diagnosed in November with stage 4 severe endo and frozen pelvis after years of pain and problems and doctors fobbing me off. I am on monthly decapeptyl injections at the minute which i think is similar to zoladex. Yes its stopped my periods but the side effects are awful and the pelvic pain is still horrendous. Currently signed off work with the pain. My next op to try and sort me out is in mid april so it will have been 5 months since the last op by the time i have it done. I will then have a small window to try for a baby but have been advised I may need IVF. I know what you mean when you say all you can think about is conceiving. Nearly all my friends either have newborns or are pregnant so I am feeling extra broody. Theres a chance the endo has gone inside my bowel and if it has i will need part of it removed and will need a temporary bag, this frightens me too.

    I really hope everything goes well for you in your next op and that you manage to conceive. Message me if you need a chat.xx

  • Hello

    I had a lap and 3 months on Prostap then a 6 hour lap to remove it all, he removed every last bit, I have stage 4 on pod, bowel, bladder, ureters, several cyst one at 15cm, the Prostap should of helped it stop spreading whilst I waited, we couldn't afford for it to get any worse, I then had ivf a month after

    Good luck x

  • Hi,

    I'm a complete newbie to this forum (only discovered today) but having just read your post I just had to reply.

    Im 38 years old & was diagnosed with endo at 25. I was told it was doubtful I would ever conceive naturally. We waited for nhs ivf, all the while never conceiving & then eventually aged 30 had our baby boy (now 8) on our 2nd ivf attempt. Four years later we conceived naturally & had a baby girl (now 4!) Believe me, I have been in your shoes & now having my two beautiful children is like a dream come true.

    Please stay positive however hard it is & don't lose faith. Have your treatment & take time to recover. I just wanted to tell my story & if possible give u hope. I wish u all the very best.

  • Hey Emjay-75

    It was so great to read your reply - I know how powerful having a positive frame of mind is and you've certainly helped me to keep mine!

  • I totally understand you cause I feel the same way. I need surgery but want to give myself six months to see if I can conceive before I even mess with that even though I'm in pain half the month. Would that treatment help you more to conceive though? Maybe that's why they want to do that first?

  • I totally agree with emjay 75. Hang in there girls I have stage 5 endo which was diagnosed when I was 18 & I was told I had 2% chance of ever having a baby after my 3rd lap when I was 21. I feel pregnant I now have a gorgeous 9 year old. Since then I've been diagnosed with Adomeniosis & poloistic ovaries. This has led to miscarriages. However I just so grateful that I did it as quick and early on in my life as I did as I've got an amazing little man. Keep strong girls and positive endo will not control your life :)

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