Endometriosis and now andemyosis

I had my app at uch thinking it was a bsge app but it wasn't however they were still better than most gynae I've met and after an ultrasound they said it appears I have andeymyosis please excuse my spelling I can barely say it let alone spell it I don't really know how this leaves me other than this explains why it's not just around my period I feel more lost I'm only 27 my pain this years invariable and I don't want a hysterectomy at least not yet

5 Replies

  • Hi, sorry to hear you adenomysis too. They are a BSGE centre - are they going to give you an app with the right team?

    Pain from Endo can be present all month too and not just with periods. Was hysterectomy the only option they discussed?

  • They didn't actually discuss giving me any surgery to be honest the woman I saw said as there's nothing really bad structurally and I'm not looking for fertility help or in enough pain by their standards not mine to see the endo team or have a laparoscopy I've been told I'm only going to be treated medically but I was hoping for a quick fix stupid as it is n thought I'd have a lap n fix everything but that's not happened my own research has led me to the idea a hysterectomy is my only option all hormones seem to send my emotionally over the edge and I've lost my whole life I don't socialise and I'm reduced to living in maternity wear I can't eat well but still gain weight with a constantly changing body migraines and my uterus attacking me at any time it likes I just don't see hope anymore every option is more hell I went to my gp who tried to change my pain medication for anti depressants today which gave me a complete panic attack I'm sorry to off load like this but it's horrible finally having an answer and still having crap to deal with plus there's no info on andeymyosis on nhs other than hysterectomy I have three children I'm happy with and I had my cervix cut flush 6 weeks ago so I don't feel I could do another terrifying pregnancy again I'm just scared this is gonna age me so fast and there's no help or answers even with my endo confirmed I've struggled with rubbish Drs and even high gynae who didn't specialise but I'm just not severe enough for the specialist I'm in a catch 22 where I have to let the Drs give me medication I know will make me depressed and hope either the lack of pain out weighs the hormones if it works or just limp on with more opiates indefinitely I hate this condition so much

  • Sorry your suffering so badly and you're so young. I'll be brief as just about to go on holiday - I'm 47 and 1 year post hysterectomy - having resisted anti depressants for years I now find they are making a big difference to my mind set and pain - or how I deal with it. The month of full on panic attack as I got used to them was hell but worth it now - I take cipralex - not common one but more gentle and take in drops do you can increase it slower to reduce side effects X

  • So sorry to hear your story. I too am on anti Ds (lofepramine) and find they do help.

    I had a complete meltdown at GPS yesterday as after hyster and BSO in Feb 2015 I've been in constant pain and had lap in Nov 2015 to remove endo left behind I'm still in pain but no one wants to listen or do anything - even BSGE clinic told me pain relief was best option and to try new HRT. GP won't give me HRT as blood pressure too high but after my meltdown she did give me tramadol which seems to be helping a bit.

    You just need to find the strength to keep fighting and I don't know where we get that from. Just take it a day at a time and maybe anti Ds will give you enough strength to fight on. (easier said than done I know 😀)

    Good luck.

  • I do want to try anti depressants now but my gps being funny about giving me them and my codeine or tramadol but currently I'm entirely dependant on having pain meds to get through day to day tasks I think I'm gonna change gps to one a little more experience as after two appointments I'm still without a prescription thank you for replying I appreciate it a lot xx

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