Adenomyosis : Hi Saw my gynaecologist today... - Endometriosis UK

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Adenomyosis

treez profile image
14 Replies

Hi

Saw my gynaecologist today and I have suspected adenomyosis she is going to consult another gynaecologist before trying me on 3 months of gnrh if this works I will probably have a hysterectomy I'm 47 so I don't think I would be too far off the menopause.Any advice would be welcome.

Thanks treez

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treez
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14 Replies
CharlotteB profile image
CharlotteB

I'm 23 and recently got diagnosed with adenomyosis. I'm currently on decapeptyl, but for me it's not working but I hope for you that it does. Good luck if you go ahead with having a hyserectomy. I'm far too you to even consider that, but it is the only way to cure adenomyosis. 

treez profile image
treez in reply to CharlotteB

Thanks,I hope you find something that works for you it must be hard being so young at least mine started late on.

Treez

Kell27 profile image
Kell27

Hi both

Do you mind me asking how you got to this diagnosis or what symptoms you had? I've been reading up on it but can't really understand it xx

treez profile image
treez in reply to Kell27

Left sided pelvic pain feels like something is being torn and stretched, sometimes burning mine was all left sided very much like endometriosis symptoms my pain doesn't really go away now but much worse during period mine showed up on a scan,my gynaecologist said it was unlikely to be endometriosis as it has only started in the last few years and as I'm 47 the positive for me is symptoms go after the menopause,so can't be too much longer for me now.

Treez

JeanOsborne profile image
JeanOsborne

Hi Hun I had Zoladex for 6months prior to my hysterectomy for adenomyosis. The first month was hell . I also had severe endometriosis. The first month was hell. Had a bad flare up which is normal until ovaries finally shut down. For me it caused severe constipation and depression. So ended up on Laxido which really helped and had to go back on my antidepressants which I had been off of for nearly 9years. After the second injection things really improved. No periods no pain except for pain from 11cm endometrioma occasionally. Did find i got headaches for a couple of days with each injection. My energy levels increased and I felt better than I had done for a long time. By the time I had my 6th and final injection I had managed to wean myself back off the anti depressants. Had op on 3rd March and I do feel better than before the op. Going on zoladex gave me the chance to see what menopause would be like, although the hot flushes are now worse than ever, but hopefully once I start hrt in about a month these will ease a bit. I take evening primrose oil and sage leaf tablets one of each twice a day which helps. Good luck Hun . If you have any questions let me know.

treez profile image
treez in reply to JeanOsborne

Hi

Thank you so much for the really helpful advice (I had read a few of your posts already ) I expect whatever they give me to be no fun but the way I look at it I would be starting the menopause before long anyway so at least I will get a taste of what's to come I will find out next week what they are going to give me so might be back in touch with more questions if that's okay. I think I am going to some acupuncture to help I have a lovely lady that I have been to before so hoping that will help.I already get bad constipation so already use laxido.

Thanks best wishes treez

JeanOsborne profile image
JeanOsborne in reply to treez

Of course it's ok Hun anytime.

treez profile image
treez in reply to JeanOsborne

Hi jeanosborne

Just spoken to my gyni and starting on prostap on Monday dreading the side effects but on completely agree with them as it's better to try 3 months rather than have a hysterectomy  (although god knows how long the waiting list is anyway)have you had this?

Thanks treez

JeanOsborne profile image
JeanOsborne in reply to treez

Sorry Hun have I had hysterectomy or prostap?

treez profile image
treez in reply to JeanOsborne

Sorry the prostap

JeanOsborne profile image
JeanOsborne in reply to treez

Hi Hun I've had Zoladex which is the same type of drug. If you have any questions I'm happy to to answer them.

treez profile image
treez in reply to JeanOsborne

Thanks 😊

kirstybooth1985 profile image
kirstybooth1985

Good morning! 

I was diagnosed with stage 4 endo and adenonyosis too. I am 30 years old and had a hysterectomy on Monday this week. It is the best thing I've ever done! Aside from discomfort from the surgery I don't seem to have any endo pain (fingers crossed). 

Lots of love xx 

treez profile image
treez in reply to kirstybooth1985

Thanks 

That's hard for you at that age but I think you get to a point where you just want a normal pain free life.

Hope you continue well with your recovery and I hope that you stay pain free.

All the best treez

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