Advice on next steps please!

Ok, so a year and a half ago I was admitted to a&e with severe abdominal pains, aged 39. Turned out I had stage four endo. I had never heard of it before (though of course like so many of us had gone through half a lifetime of terrible period pains) so I bought all the books and swotted up. I had an op, and then, stupidly threw all the books out thinking "that's it, I'm cured". Went through a terrible year of trying to conceive, only to be told that my chances, even with ivf, are very slim. I came to terms with ALL that and set about getting on with the rest of my life. And now it's back. For the past six months or so my sleep has been terrible. It seems that two weeks out of four I just can't sleep and there is no logical reason for it so it must be my hormones. The pain is back, worse than ever. I have a high powered, stressful job that i can ordinarily do with my eyes closed. Now I'm thinking of handing my notice in. I'm going to my gp tomorrow. Historically he has been rubbish with all of this. I want a bloody hysterectomy tbh but think I'm perhaps being over dramatic. The question, then, is what pill should I ask for? Which one works the best?!

8 Replies

  • Hi - stage 4 endo must only be dealt with in a BSGE accredited endo centre and the hospital you mentioned in a previous post isn't listed as having one. As soon as you were found to have such severe disease you should have been stitched up and referred on. You have 3 centres in Manchester. You need extremely skilled advanced surgeons to deal with RVE and these mostly only work out of centres. It is likely therefore that your endo was not fully excised and a hysterectomy is unlikely to resolve this and neither will hormone medication. In terms of stopping periods you should have been put on hormone meds after your surgery to try and prevent new endo from forming but I suspect you still have some remaining from before. Click on my name and look at my post on the treatment pathway, how to find a specialist centre, RVE endo and endo on the uterosacral ligaments.

  • Thanks for this. I was at st marys, I think they do have an endo centre? Your posts are extremely helpful, have been reading up. Doc prescribed the pill. We will see.

  • Yes they do have an endo centre. I should think with stage 4 it must have been at the centre that you had the lap because it would have been against regulations to have had it done in their general gynacology department. So assuming all your endo was excised it may well be adhesion pain you are feeling and/or new endo that has formed. Do you know if it was excised and whether they got it all as far as they knew? As you have being trying to conceive and without being on contraception or other hormone treatment to halt or slow periods there is a chance unfortunately that you have new endo. After treatment at a BSGE centre you are followed up for 24 months with quality of life questionnaires. You should have had one at 12 months - did you get one?

  • No, I didn't get that. Should I contact them and ask for an appointment?

  • Can you send me the name of the surgeon by private message to see if they work at the centre or if you were seen inappropriately in general gynae.

  • Hey! I'm with you on the sleep 2 weeks on 2 weeks off it's a nightmare. I'm 40 and have been begging for a hysterectomy for years but realise that's not the answer. I had novasure endometrial ablation last year during a lap hoping it would stop my periods but I still get a monthly albeit small bleed for a couple of days, makes it easier to cope with.

    On the job front I reduced my hours as I couldn't cope full time, I'm hoping to reduce further in the future. Perhaps you could consider going part time/reducing your hours?

    How did you get on with the GP? x

  • Hi. Thanks for the reply. My gp was quite good really, sympathetic and knew a lot about endo. Judging by other people's stories with useless gps I think I've been lucky! She prescribed the pill, regevidon. We'll see. Interesting you say you have the same problem with sleep, she told me the two don't go together and there's probably a different cause, though I don't see what as its cyclical and just appears and disappears regardless of how stressed I am!

    Reducing hours not an option for me. Career break is a possible, I'm giving it one more year!

  • Mmm! I had full blood tests done recently all came back satisfactory so my gp isn't really interested now 😡. Glad yours was more sympathetic & I hope you get on well with the pill x

You may also like...