40 and fed up

My pain started at 13. A week in hospital ended with doctors telling my mum it might be endo but they didn't think so because I was too young. Mum not knowing what that meant took me home and I was left to get on with it.

I had an ectopic pregnancy at 18 and they removed my right fallopian tube. My tube split and I bled internally for a few days before my tube tried to burst. A blood transfusion and emergency surgery and the doctor told me it would be a miracle if I was to fall pregnant naturally. 3 rounds of IVF followed, one worked but I miscarried at 2 weeks.

So fast forward 10 years and my symptoms have got steadily worse. My Gynae diagnosed the Endo 4years ago and classified it as level 4 and frozen pelvis. My bowel is attached to my womb, my left ovary is stuck somewhere it shouldn't be, my bladder is involved in this little party too and hey, it is all good fun. My periods have now reached a level of pain that terrifies me. The bleeding I can just about deal with, but the pain cripples me and l am now unable to carry on and I have started taking days off work. My last one had me on the kitchen floor writhing.

The only help I have been offered is a Mirena coil or the pill. Neither of which are an option for me. So am I really destined to spend the next 20 years managing this with mefanemic acid and heat packs till I hit the menopause??

5 Replies

  • Do you mind me asking why Mirena or the pill is not an option for you? Have you had a laparoscopy to remove/excise your endo? X

  • Hi, no don't mind you asking. We have tried all pills and I have had everything from blood clots to migraines and oh my God, the weight gain... every procedure I have had done has left me with infection, I refuse the coil on the basis that I do not need fat making hormones and the threat of recurrent infection lodged in my body. My last procedure to remove some of the endo had to be abandoned as there was too much of it. I have been unlucky as most doctors concentrated on the ectopic pregnancy as the cause of my infertility, the 'scar tissue' was an afterthought x

  • If all you've been offered is the pill and mefenamic acid, it might be time to go back to your GP and get yourself referred to a different gynaecologist. If yours isn't a BGCE accredited endo centre, ask to be referred to one - they are more experienced at dealing with endo and can do a more specialized surgery.

    I would also be going to the GP and asking for better pain relief. Mefenamic acid is useless for severe endo pain. There are lots of better ones available - I have codeine, tramadol and diclofenac. You can also go to A&E for pain relief if you need to.

    Have you been offered or tried any of the other drug treatments - zoladex, norethisterone etc? I appreciate that all the hormone treatments are pretty horrible but they can offer relief and sometimes the benefit of that outweighs the downsides.

  • Hi Kimmi

    I'm 40 & fed up too :(

    I have refused hormone treatment for the last couple of years, I feel miserable enough without hormones aggravating my migraines or depression. It's awful that they only thing the offer us is hormones, it angers me.

    I have asked for a referral to a endo centre near me. I cant believe in this day and age we cant get proper treatment. I find diet changes helps with pain and bloating although I don't know what stage I am or where the endo was/is, I do have bowel adhesions. x

  • I know, I don't want more hormones, I just want help. Hope you find some too xx

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