Zoladex and medical gaslighting endo

[Hope264]

Hi all,I am a long termer living, going on 20 years D.I.E. diagnosed or rather not diagnosed in late 20’s via an unrelated pelvic surgery. Stage 4? level lesions removed at that time and were pretty much fused with my uterosacral ligaments. This is what I live with.I have been using dienogest for many years and have been offered to try zoledex injections. Any input on experienced with zoledex esp with other women in late 40’s of interest.

 I also want to vent a bit here ladies. My primary care doc has wrote a very ridiculous letter stating - quote marks - “endometriosis flares” like this is a made up thing for which I engage flexible work arrangements or must take time off always at certain days of month.My gynie has scoffed at this in a very supportive way, with confirmed diagnosis, surgeries, bowel involvement,  etc I feel sad tonight though, more than sad.  

I am aware that my whole experience has again been dismissed in a way I thought was over after my painful long journey. That at this point I would not have to self advocate just to be ‘believed’ as a very compliant patient and active resilient, somehow still working person.

After all these years, how can I hope for my daughter, my niece the young ladies on here, when with one round of a typed letter can have me questioning myself and and feeling without a primary person to navigate the healthcare system in my country. 

[Rainbow2468]

I'm so sorry to hear your being treated so harshly. My goodness we can out people into space yet women are treated with such contempt it's disgusting. Sending you a big warm hug ❤️

[Moonglo]

Hallo! Sorry to hear you’re so sad about your recent treatment, it just erodes at your trust in a system that seems to have worked for you so far.

I’m a long-term Zoladex user, having started it 8 years ago and I’m nearly 47. It works for me because I’ve had minimal symptoms (mainly some hot flushes before and after my injections) and I go for regular dexa scans. I’m happy on it although it’s not for everyone - you can find out symptoms that others feel -both positive and negative- if you search on this forum.

How long are they planning to put you on Zoladex? Because it’s licensed for a very finite time (6 weeks on average) - there are exceptions like mine, but mine was prescribed by a BSGE specialist. And what do they plan after that?

Is there any reason they’re wanting to move you from Dienogest? Because I would challenge that if it’s still working for you, perhaps get a second opinion.

[Lilyjack]

Unfortunately I think this is an issue worldwide.

In the UK the average time for endo diagnosis is 6+years. Therefore this is 6 years of being told you have irritable bowel or my absolute favourite ‘a low pain tolerance!’

If their entire pelvis felt like mine did, not to mention the pains down the legs and up the back etc they probably wouldn’t even be able to walk! But I still get my kids to school, clean my home, put dinner on the table and although I have had to reduce my hours to part time I still work!

I’m currently on no treatments because I’ve ran out of options except surgery so rely on pain medication, supplements and yoga

I’m also a parent to a daughter I worry about her future too but as finally more research is being done all we can do is hope our girls won’t suffer as we have.

I was dismissed years ago when I informed a GP and a gyne that my grandma, mum and sister all had the same issues as there was no evidence of it being hereditary! We are walking talking examples of this running in the family and unfortunately my nieces are also showing similar issues but will have to wait and see what their outcomes will be.