Diagnosed with adeno, now their looking for endo....

[Bubblepoppy]

So long story short I have adenomyosis diagnosed for 4 ish years have pain everyday take 8 strong painkillers a day that only take the edge off the pain periods are 10x worse and nothing works on that. Was referred by gyne to see a hospital gyne for a hysterectomy got all excited that they was taking my adeno away and that I'd finally be pain free, now their saying that I have to have the ablation procedure done on adeno to try to burn it away and they are also sending me for a laperoscopy to look for endometriosis, and have to take the pill back to back has anyone else had the pill back to back and had it work for either of these conditions just feel bummed out that it's not been taken away now 🙁 now I have to wait longer to see if these work, in fact I'm not bummed out I'm pissed off this is the 4th gyne I've seen now, thanks in advance

[geekybird]

Regarding "now their saying that I have to have the ablation procedure done on adeno to try to burn it away" - you should be able to insist on a hysterectomy. Frustratingly there don't appear to be any NICE guidelines for adenomyosis but generally NICE says that you should be given options for your condition and enough information to make an informed choice. Everything I've read about adenomyosis suggests only a hysterectomy will resolve it? If they're wanting to give you a laparoscopy anyway I don't see why they can't give you a laparascopic (or laparascopically assisted, as appropriate) hysterectomy and look for / treat any endometriosis adhesions they find at the same time.

I had an unsatisfactory consultation for heavy bleeding where I was told effectively "You can have an ablation, this is how it works, here's the leaflet, they'll send you a date". My husband was livid when I told him as in the past I'd had a large fibroid which contra-indicated ablation. We emailed to say NICE guidelines hadn't been followed and I was given another consultation which my husband also came to. I was scanned and subsequently referred for the ablation I wanted at that point (I've since had a hysterectomy).

If you can get another consultation, I strongly recommend you take someone with you who can help advocate for you - preferably someone confident who knows what outcome you want. It's very difficult to be assertive when you are on your own in the face of an 'expert' and probably not feeling well. To get another consultation it may also help to speak to PALS at your hospital trust.

I hope you get some treatment that helps you soon.

[Bubblepoppy in reply to geekybird]

Thank you for your reply I will try this x