My 15 year old daughter diagnosed with endo following lap. Put on Zoladex 2 weeks ago and now she is suffering from extreme pain in legs etc

My daughter has been suffering with pain for year and following lap - she was diagnosed with endo - she should be sitting mock exams and is final year of GCSE's. She has so much time of school this year we opted for the zoladex (didn;t have much time to decide).

She had her first implant 2 weeks ago (with Livial) and on Friday, she couldn't walk!, she has extreme pain in her calves and feet. Went to hospital and after checks and bloods she has not sign of infection and clots. They said it was a reaction to Zoladex. She still has the slow release implant - monthly. Does this mean that the zoladex will need to out her system before we see an improvement. Have tried to ring our consultant today who is in surgery - waiting for reply. This is my first time on here and wondered if anyone else had knowledge of this side effect. Thank you for you time. Lisa.

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  • Firstly, Im so sorry that your daughter has to go through this at such a young age when she should be able to live her life to the full. I know that joint pain is a side effect of zoladex but I personally havent heard of it being so extreme. Mine wasn't (I had it twice, once for six months and then for two years) however everyone seems to experience different side effects, some have more flushes or exhaustion than others for example. Some can just not get on with it whereas for others it it transforms their lives being pain free. It does seem odd to be in so much pain after just two weeks as it usually takes at least a few weeks to get into your system properly and start feeling any effect. Its unfortunate it she cannot carry on with it as for me it certainly helped with the pain relief. Maybe she could try the coil which is what I'm just trying now. As with zoladex it doesnt suit everyone but may be an alternative to consider. Not sure I can help too much with your question but I hope by now you have spoken to the consultant and have some answers. Unfortunately with this condition you often have to push for answers and make a fuss to get somewhere so its great your daughter has you supporting her through this. Good luck. x

  • Hi,

    I'm 21 and was diagnosed when I was 17 but had symptoms and was ill starting from about 12 or 13 so I feel your daughter's pain! I went on Zoladex after my first lap at 17/18 and had side effects however I had injections not an implant? Is this different to what your daughter had or the same thing as if not, may be worth trying the injection? I did have side effects, was a bit achey for a few days after, main one being night sweats which unfortunately I still get on and off now and was unable to drink alcohol without being sick (maybe not such a bad thing at her age :) ) but when I had my 2nd lap last year at 19, it has greatly reduced my adhesions so does help.

    If your daughter ever wants to chat, then feel free for her to message me as I was in school when I was trying to get diagnosed and like her missed a lot of time due to being bedridden most of the time with pain. My teachers weren't sympathetic unfortunately as I was still waiting for a diagnosis and they thought I was just playing up but hopefully hers are better than mine were!

    All the best,

    Xx

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