Pain is coming back :(

So I had my 6th and final zoladex injection the start of November and I think it's wearing off already! For the last week I was anticipating AF I was having that normal heavy horrible feeling but she never came. But also the endo pain is back I've had shooting pains back what feels like a poker stabbing me inside and lots of sharp twingey pain on my left side and the old poker up the bottom pain that takes my breath away.

It's only been a week or so it's come back to this extent and already I can't see how I can cope with this long term like I was before zoladex :'(

I don't want to be hooked on pain meds and I'm fed up of hiding my pain it's been about 2-4 episodes bad a day during the last week they last between split seconds and I'd say an hour at a time. I know it doesn't sound a lot but I was used to it before zoladex and now it's wearing off it's horrible feeling this again :'(

I just don't know what to do I've got an appointment with my consultant on the 15th this month and I don't know what to expect what more can be done? I don't want another lap I had one for diagnosis two years ago now and I hated it. I want to try for a baby next year when my partner and I have our own house... Urghh I'm stuck in an awkward situation and don't know what's best or to expect in the future :'(

Any advice ladies

Xxxxx

8 Replies

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  • now is probly the time to try for a baby sweet

  • I am so sorry you are going through this. From what I understand though now would not be a good time to try for a baby, you need to wait 12 weeks after your last injection and as you said you want to wait until you have your own place. You sound very scared and I know in the past when I am scared or stressed my pain is always worse. I also get the pain up the bottom and sitting down when I am ovulating is like sitting on a broom handle. All I can tell you is what has helped me as although for all of us Endometriosis causes suffering, we all experience it in our own way. Learning some form of relaxation technique will be your best friend, the mind is very powerful and I had no idea what a powerful healing tool it can be for the body. It doesn't take the pain away completely but with powerful visualisation focusing on happy thoughts we can sooth the fear that makes the pain so much worse. I hope this helps and your appointment next week will be positive. Don't feel bad about taking pain relief either, if you need it you should take it. As women we judge ourselves too harshly, we should be able to do this cause othe women do when truly we don't know what they are living through, or missing out on. sometimes we just need a duvet day with some pain relief, a cat to cuddle and a bit of Sandra Bullock to make us laugh ;0). Big hugs to you and I hope you find some healing soon. Jen xx

  • I'm so sorry to hear you are having such a rough time - I was on Zoladex last year for about 7 months as well, before my first op. It doesn't make the endo go away, just switches off your hormones for a while, and I know - the pain coming back is just so depressing, somehow having a break and then going back to the beginning of all that pain you forget how you used to handle it! I've got stage 4 endo, ovaries & bowel all stuck together, and I'm familiar with the excruciating poker up the bottom pain.

    Zoladex is not a long term solution though, it has so many other bad side effects, not least early onset osteoporosis. The only other option I was given by the consultant was more surgery, and I'm pretty decided that I don't want to go down that route.

    Are you careful with your diet? It does make a difference for me, although it is the hardest thing to stick to! Avoiding too much wheat and processed sugar are the main ones for me - eat lots of veggies, not too many carbs in the evening and trying to exercise as much as possible are the best things I have found for coping, and giving me a few days a month without painkillers. And on those really bad days when you can't move, take the pain killers (just make sure you eat something with ibuprofen) and curl up round a hot water bottle.

    Sounds crazy, but I also have tried visualisation techniques - the one that works best for me is imagining a really clear picture of my pain - all teeth and sharp claws and put it on a chair the other side of the room and make it stay there. Or sometimes I block it in the bathroom and then eventually flush it down the toilet! It takes practice, but it does help a bit sometimes - I tend to get really panicky when the pain won't stop, and trying visualisation keeps my mind from going into panic mode.

    When I'm taking pain killers I also try and make sure that I take them before the pain gets hold, (although I do miss-time it occasionally still) and then I keep on top of them, making sure I take more every 5-6 hours. I try and know my pain, listen to my body and when it is telling me the pain is on it's way, and if I keep on top of the painkillers in that way, I feel fuzzy and horrible, but I can still function and I'm not crippled on the floor in agony.

    Even though I've suffered with this for years, it's taken the whole last year for me to start to come to terms with living with this horrible illness, and I still struggle to get my head round it sometimes. And hey, you never know, maybe if you do get pregnant next year, it will really help your symptoms in the future.

    I really do hope it all works out well for you, keep as positive as you can, but if you have a bad day, just allow it and then move forwards. Wow this has turned into an essay! I'll stop now.

    Sending you big hugs and a ton of sympathy,

    xx

  • Thanks girls for the advice girls. I think I'm going to get on top of a healthy diet and trying to visualise the pain. FMcB79 you hit it on the head I really don't know how I coped before but I know I did so I can learn again.

    I really wish we could just start trying for a baby now but we just aren't financially stable enough. I'm 22 just graduated in my first full time nursing job (I know I don't sound like it but I think I just visioned myself for the next few moths as a total mess last night). My partner is 25 just finished his post grad and is now in a full time job. Children never even entered our thoughts this soon until we were told my endo would effect our fertility in June when I started the zoladex. We are saving like mad to buy our own place still living with parents ATM and obviously I need to wait to even get maternity leave.

    Life has thrown us a big sour lemon with all this after only getting engaged October 2013 our priorities have had to change. But I'm just moping now after my last zoladex I was so motivated and happy to start getting healthy etc ready to have a baby and I knew the pain would come back but I didn't realise how hard it is to manage again I literally don't know how I was ever just used to it :( xxx thanks though girls xxxxx

  • I've only had two injection s I couldn't cope with the side effects, helped the pain a bit. I'm seeing the specialist on the 17, don't want a hysterectomy as we want another baby, good luck trying for a baby.

  • I know the side effects were horrendous tbh I did contemplate stoping after my 4th but the last two were brilliant for the pure pain relief. Thank you hun. Good luck as well xxxx

  • Hello, so sorry to hear what you're going through. I had my 6th injection in May, got pains back within 4 weeks and the period within 6 weeks... . Was then offered another 2 injections but had a bone scan first (excellent GP that organised it!). Symptoms are now all coming back after the latest injections however it took slightly longer this time. Going back to gynea later this week for evaluation and hoping that they will continue with injections (as I don't feel like another op either).

    However this post was just as I wanted to let you know that they have apparently found that the GnRH treatment preserves fertility (the theory is so far that it is because GnRH treatment stops the endo from growing) And that you might be able to ask about an extended period of GnRH injections but then combined with a very specific addback therapy (Tibelone or Livial I believe it's called - in order to minimise the eostrogen addback and give you more of the progesterone).

    So wishing you all the best, good luck with both new job, career, treatment and new home!! And ask about a bone scan ;-) Take care

    xx

    PS re diet which I'm sure you might already know - to avoid foods with phytoestrogens in ie soy, peanuts especially but also legumes (beans, peas) in too high quantities.

    PPS A couple of interesting links as they are finding out more about the progesterone resistance displayed by the disease: sciencedaily.com/releases/2...

    and ncbi.nlm.nih.gov/pubmed/246...

  • Heya hun thanks for that I might ask about a bone scan I'm not the best at eating calcium rich foods so I think it might be a good idea. I was given livial with this course but I thought it was just HRT to help with the side effects I didn't think it assisted the zoladex in stopping the endo growing. Honestly I wasn't very good at taking it every day either :/

    I might ask then if I can have some more injections just until we are ready to start trying ?

    Thanks so much xxxx

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