Advice on next steps please!: Ok, so a year... - Endometriosis UK

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Advice on next steps please!

KateDonovan13 profile image
5 Replies

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?!

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dabba76 profile image
dabba76

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

KateDonovan13 profile image
KateDonovan13 in reply todabba76

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!

dabba76 profile image
dabba76 in reply toKateDonovan13

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

KateDonovan13 profile image
KateDonovan13

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.

KateDonovan13 profile image
KateDonovan13

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

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