Hi i've just been diagnosed with endometriosis (finally) and possibly adenomyosis. Has anyone else been diagnosed with both?

[angiechick78]

[daffodil]

Hello - I have been diagnosed with both.The adenomyosis was after an ultrasound scan which showed thickening of the womb lining and enlargement.They did say it could not be confirmed without hysterectomy and as I am trying to avoid total hysterectomy and clearing of adhesions which are sticking everything together,I have not taken up the gynaecologists suggestion yet! If it is definitely adenomyosis ,then removal of the womb should help,but if added to that you have endo,unless they remove ovaries and also get every bit on endo removed,it will come back,especailly when they add back HRT!

There are lots of treatments available,and depending on your age and whther you hope for family,most find something to dampen down the pain,but none of them are cures!

I am fairly new to this forum and one helpful poster advised to type in a topic in search box on rhs top and this will bring up previous posts on same topic.

Best of luck anddo keep in touch.There are lots who will share their stories.

[angiechick78]

Thanks I had the ultrasound that picked up the endo and adenomyosis. The first thing the consultant suggested was the mirena coil which I refused as I had had one for years and suffered with pain anyway. I have said yes to the mini pill to try and reduce the blood loss, she then said we could try zolodex injections to induce menopause but I'm very reluctant to try this as I saw how it affected my mother (sent her loopy) I have 3 kids and 6 step kids so am not wanting any more. Now that I have a diagnoses I just want to be pain free and if that means a hysterectomy so be it. Just feel like I'm going to have to go through the motions of trying all the possible "treatments" and end up in the same situation I'm in now

[michelle2013]

Hi I was diagnosed with both 2 months ago after years of very painful periods and up until I had my ablation very very heavy periods. The ablation helped initially with both pain and bleeding and now it's the pain that is the issue. I was diagnosed after having an internal scan. I have completed my family years ago and just want to be pain free to enjoy my children (16-24) and two grandchildren. I was offered the mirena coil years ago before my ablation but was never keen and was offered it again 2 months ago and refused again. The gynea then said best option would be hysterectomy I said yes please. I have been put on a three month course of zoladex (had two so far) and I go back to gynea on 4th Dec and hope to be told when I go in for my hysterectomy.

My gynea has told me she will remove chocolate cysts at same time but whether I keep or lose my ovaries is my choice. Everyday I change my mind. But swinging towardskeeping then if healthy?!! As I've not had laparoscopy I don't know where endo is until they open me up and if it can be removed.

[angiechick78]

Thanks for sharing michelle2013. I'm just at the beginning of my endo/adeno treatment. But I have family history on both my mums and dads side of the family and watched my mum go through hell with the zolodex injections. I'm just scared silly I'll react badly. That's why I'd agree to a hysterectomy in a heartbeat. I've finished my family and now want my life back. I know I'm going to have to try some of the things they suggest I just don't want to have bad reactions to hormonal treatments as I suffered badly with depression and DO NOT want to go back down that road.

[shali1981]

Hi I have both. It's horrible. I am 32 and was diagnosed at 17 with endo but only got the adeno diagnosed last year.

I am due for a sub total hysterectomy in March next year and I am having my ovary removed (I only have one born this way lol)! I have tried everything, and barely got relief. So I am happy with having my op. But this came after years of trying other options. I understand that you don't want to risk hormone changes but I would speak to your GP and just give some of the treatments a go. I think surgery should be a very last option. Best of luck xxx

[angiechick78]

Thanks hun. I'm going to give the treatments a lot of thought and really research them before agreeing to anything. And I know I'm not going to be advised to go straight in for a hysterectomy without trying other treatments. Just frustrated

[shali1981 in reply to angiechick78]

It is highly frustrating and I understand where you're coming from. The most important thing is for to have all the information you need so you can make an informed decision. As I said it took me years to get them to agree to surgery but that was after failure after failure on medication. I hope you find a combination that works for you and that you never have to consider surgery xx