adenomyosis

Any advice or experience of adenomyosis and the zoladex injection. If I have been told I have a bulky uterus so suspect i have adenomyosis then and have had a biopsy during my lap which is showing endometriosis in the endometrium confirming adenomyosis that's how it was worded in letter. I'm thinking it then sounds more like diffuse adenomyosis so IF it is that, is the only 'cure' hysterectomy??

I have an appointment in a weeks time and am going to be offered the monthly hormone injections to put me into temporary menopause. I react really badly to hormones and know mentally will really really struggle with this and is there any point as will this make any difference to the adenomyosis anyway or just pause it. I already have quite bad bowel and bladder issues from the swollen and sore uterus pushing on them especially when I lie down as my uterus is inverted so if injections just pause whats happening I don't think it really gonna help enough to outweigh the mental stuff from the hormone injection. From what I can work out on the NHS your offered chemical help before the hysterectomy but is the chemical step necessary?

I 'm 41 and i also have had superficial endo in april cut from rectum behind ovary and uterosacrial ligament, all my pain is on the left hysterectomy was discussed as soon as I woke from lap. Hysterectomy leaving ovaries as she thought the uterus bulk pushing on things was the main problem, pain has increased since lap greatly , hope this makes sense . :) Any advice gratefully received :)

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  • I have had endo removed but also had the bulky uterus ! Adenomyosis etc

    In short I am largely improved I had a mirena prior to surgery wish stopped periods and enabled the endometriosis to shrink . Unfortunately longterm this has not agreed with me and I declined zoladex for the reasons you stated . I however can't cope with periods as have back pain and awful uterine issues bloating pressure etc cramps I could go on..... I started a combined pill called Qlaira ! I have little if no bleeding am more balanced with hormone issues and my womb is behaving of sorts without the allowance of endometrial thickening ! For me zoladex would be a last resort before total hysterectomy . I know I'm currently buying time til I am older and will then have a hysterectomy which will deal with the problem but this has improved my quality of life so far only 3 mths in on pill! I hope this helps you 😃😀

  • Hi, if you don't mind me asking how old are you and did they say anything about the adenomyosis shrinking if you had the zoladex injections, I still not clear if they pause what's happening or if your womb shrinks I've heard both, do you have any idea?

    Because I am 41 now and have had children and need no contraception I really don't want to take the zoladex but don't know . My periods really aren't any worse than they've always been heavy and lots of clotting but they have always been like that it's just the constant bowel and bladder issues that don't seem to change during my cycle much , just pain doing either and needing to open my bowels all the time and horrendous night sweats, I've lost so much weight and cant sleep . But am handling it at the moment mentally and can still laugh at stuff so really don't want to add mental problems on top of the pain and being tied to the house , luckily I'm self employed so can spend as much time as I like in the toilet so am managing to work a bit in my PJ's :)

    Thankyou so much for your reply I will look into Qlaira pill also :)

  • I think zoladex does both but I wanted to try other things and the mirena coil and this pill have shrunk the bulky womb for now, there are always many options . I'm 36 and if I was going to have a menopause I would have total hysterectomy including ovaries. The zoladex induces temporary chemical menopause which is reversible when you stop having injections so it has that advantage . Unfortunately a friend of mine is on them as she has had an oestrogen based Breast cancer and having seen what she's gone through its made me certain it's not for me I'm very hormonal anyway . You could always try all the above at different times and see what works for you . All of them can be stopped at any time they aren't permanent x

  • That's really good you've found something to shrink your bulky womb gives me hope :)

    I just worry about trying anything as I a single mum with a really reduced income because of this as can't do half my job as used to work at festivals doing my clothing stall during the summer but can't because of this and no sick pay being self employed it really difficult.

    i have been thinking mostly the quick fix would be the hysterectomy even though that sounds mad. But so many people seem to have a really hard time on the zoladex and so it just seems like I'm extending the stress even if I didn't get any side effect which as I've never been able to tolerate the pill makes me really irrational and almost suicidal last time so no side effects would be unlikely, but can only do the injections for 6 months it just a sticking plaster and will end up having the hysterectomy anyway . Sorry to hear about your friend hope she's getting better now :)

  • Hi - sorry to hear of your struggles. Try this site. I have found it very useful.

    adenomyosisadviceassociatio...

    X

  • Hi hunny, my story is similar, in march last year had a laparoscopy and diagnosed with endo behind uterus that was tilted, uterosacral ligaments and ureter, this was removed, and adenomyosis diagnosed also, I opted for a hysterectomy as I was 39 have 3 children and hubby's had the snip , I didn't won't to go down the hormone road, due to it not helping g the adenomyosis just shrinking it temporarily, I had a hysterectomy in July 15, both ops with the same general gyne very experienced and a nice man, but I still experience problems, although no periods and back pain better and sex slightly more comfortable, but definitely not 100%, so I'm now with a bsge specialist centre and had the injection for 4 months to help with pain, it didn't do anything initially but finally kicked in and I'm doing loads better, still on heavy pain killers but all more capable, due another laparoscopy on the 22nd, he will take overies out and hunt for more endo, which I believe some wasn't found,

    So my question to you js are you under a bsge specialist centre????

    And advice would be if you for a hysterectomy do make sure all endo is excised thoroughly by a specialist surgeon,

    Good luck xxx

  • No I'm not at a bgse centre but my last lap surgeon is bgse and she would do my hysterectomy but think I do need to ask to be referred to bgse centre then maybe , have first gyne appointment after lap next Friday is that when I'd ask about the bgse centres ? The surgeon who did my lap is really well thought of and trains people to do laps so I am really happy with her but I'm not getting the other support I would get at a bgse centre, it so difficult.

    Sorry to hear you still ill even after hysterectomy hope they sort you out fully on the 22nd :)

  • ......bsge even sorry :)

  • If she is bsge why didn't she work in a centre,???, Surgeons gave to do an extra 3 year training to work under a bsge accredited centre,

    She could be the best in her field at laparoscopy but if she hasn't completed the excision surgery course then, she like my gyne could very well miss endo in a hidden place, as they tend to only look at tge reproductive system, check her out before you go ahead, I wish I had,

    And yes you can ask her to refer you to bsge centre or your gp can refer you,

    If you have any questions I'll be happy to answer if I can, xxx

  • She's a bsge council member but there is also not a bsge center very locally, I saw her in a private hospital and now on NHS she is very highly thought of with local endo support group and works with the endo UK charity too so sure she is a good as they come so not worried at all re that . :)

  • That's great, it's all very confusing with some docs saying that they specialises in a certain area, but sometimes that just mean that that's what their interest is in, I'm glad she is bsge accredited, where do you live, I'm in Essex and go to kent, which is over an hour without traffic, so annoying that there isn't more of these centres, good luck xx

  • I'm in Sussex I'm not sure where the nearest bsge center I think it's Portsmouth only an hour away again with no traffic 😂😂 hope you have a lovely painless week 💗

  • I have adenomyosis and had 5 injections of decapeptyl earlier this year (which is similar to zoladex). I did get quite a good stretch of pain relief with it but unfortunately it didn't stop my periods properly and was abandoned when I had a major pain flare a week after the fifth injection. It was a completely different experience to being on the pill so just because the pill doesn't suit you doesn't mean you won't get benefit from it. The first month was tough, but after that I found I coped with it generally OK. The worst side effects I had were that my breasts shrank (I dropped 2 cup sizes) and my hair thinned. TBH I feel emotionally far worse on cerazette (which I'm taking now) than I did on the decapeptyl.

    I took it with livial (HRT) and my understanding is that part of the reason why they want you to try the injections before they do a hysterectomy is to see if putting you into menopause (which will happen if you have your ovaries and uterus removed) gives you pain relief and also to see if you can tolerate the HRT, because obviously if you can't then an early hysterectomy could cause more problems than it solves.

  • Aha I see , Thankyou for telling me your experience😀 also mood wise how did the injections effect you ? i know everyone's different but just for an idea of your experience did you gain weight also , did you get the hot flushes etc or was the hrt you were given enough to counteract that ? THankyou so much for your replies 😀

  • I have stage 4 endo everywhere and adeno. I was on zoladex with HRT earlier this year and it was one of the worst treatment I every tried. The side effects were horrific for me - joint pain, nausea, hot flushes, headaches and the mood swings! I felt like I was losing my mind. It also did nothing for my pain and from my lap in Jan to my MRI in July the endo and adeno had got a whole lot worse, so I don't believe it did anything to reduce my endo or stop it growing. I'm having radical excision and a hysterectomy in 5 weeks with a BSGE surgeon xx

  • Yep my gut feeling is not to have the zoladex as I think it may be nerve pain from op maybe and bowel issues because pain is not really worse at periods , I do have heavy periods lots of clots but only slightly worse than say 5 years ago. But my pains have been loads worse since my lap in April and nodules endo removed from my rectum and USL and superficial retro vaginal nodules removed too. I just in agony all the time walking , sitting, lying can't sleep just feel like I want to open my bowels all the time and wet myself randomly sorry tmi :) My night sweats are horrendous :( .

    I'm just not right though have lost so much weight down to aUK size 8 from a 14 and still cant eat even swallowing difficult now :??? All the waiting drives me mad and tried the pill even though I really didn't want to and it made me so down mood swings almost suicidal when I was younger I suffered with depression but have been pretty cheery and well mentally for a long time and really don't want that to change, would rather have the pain.:)

    Good luck with your hysterectomy :) thankyou so much for your info, good to get advice with pros and con :)

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