Adenomyosis and endometriosis : Hi everyone... - Endometriosis UK

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Adenomyosis and endometriosis

MrsClaireBear
MrsClaireBear

Hi everyone

Does anyone have both adenomyosis and endometriosis? I was diagnosed with adenomyosis almost two years ago after my second lap and I’m at a real loss. The lap did little to help my pain, heavy periods or the dizziness which my consultant said means that most of my symptoms are due to adenomyosis rather than endo. I spent a year trying to get pregnant with a second baby to no avail so after having suffered a horrific miscarriage, I decided to stop trying and just manage the symptoms. This isn’t going great! I had the IUD years ago and had terrible side effects so I agreed to try the contraceptive implant. This actually made things worse! I’m now taking norethisterone which has stopped the bleeding and I have had very little pain until yesterday. I’m now feeling almost as bad as I ever had and I’m so fed up :(

I’m seeing my endo consultant on the 18th June and am not sure what to ask for. Do I just need to start pushing for hysterectomy?? Is it worth having a third lap?

Thanks in advance

8 Replies

Did you have excision surgery darl? Just I’ve had three laps and only had the surface endo dealt with and zapped but they’re now looking into excision surgery where they remove it from “the root” I’m also booked in for a mapping scan too and being investigated for adenomyosis 🤷🏼‍♀️🤦🏼‍♀️ xx

MrsClaireBear
MrsClaireBear in reply to hmf86

I haven’t as I don’t think my endo is that deep - I had small bits of it all over but no real big areas that needed excision but I will ask if that’s needed. Thank you xxx

((((Hugs))) I unfortunately have both 😠 The adenomyosis did not start until after my second baby at the age of 35, I am now 46. The migraines started at 40 and I now have a complex cyst that has sent my cycle absolutely crazy. I can certainly empathise with wanting a hysterectomy. I would wait and see what the specialist says. Maybe make a decision then. Sending lots of strength xx Kel

Thanks love xxx

Hello

I have both endo and adeno and my nickname is Claire Bear!

If you are thinking of a hysterectomy and giving up on trying to conceive I wonder if you have tried injections to induce chemical menopause. I was told my the specialist nurse that they give a good indication of how your body will feel after a hysterectomy but since they are reversible it’s maybe a better option if you haven’t yet tried them. I’ve been on them for over a year as my endo is largely inoperable due to its position. My adeno could only be removed by a hysterectomy so at least I’m better off this way without more surgery.

MrsClaireBear
MrsClaireBear in reply to Maxi72

I haven’t tried that yet - I think that will be the next step but I’m really scared about the side effects. Although you’re right that it would be better than a hysterectomy!

I’ll see how that goes..xx

MrsClaireBear
MrsClaireBear in reply to Maxi72

Hi again. I’ve just started the injections this week. How did you find the side effects?x

Hi!

I came home after first one and lay on the sofa and waited to see if I’d grow a beard! It took about 24 hours to kick in and I felt brilliant although I had been warned about a period/ pain - it didn’t happen. After about 2 weeks my skin became really dry and I started having short lived hot flushes. After my 2nd ( 4 weeks later) I started HRT and these things resolved.I hope you have a similarly good experience with minimal side effects. 🙂

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