Confused about surgery : Hi all I am... - Endometriosis UK

Endometriosis UK

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Confused about surgery

Faithstar profile image
9 Replies

Hi all I am really confused and really need some advise. I am 46 years old and have been suffering with Endometriosis since 2010 . I have have had 2 laparoscopy excisions over the years and have tried Zoladex and merina coil . Unfortunately nothing has really helped long term term. I have serve endometriosis and have anterior and posterior comportment endometriosis and a rectal nodule. My consultant has said due to my age i should wait for menopause to kick in and further surgery is my choice . ( I really sense my consultant dose not want me to go ahead with it, and feel like they are talking me out of it ,) I am really not sure what to do when the pain kicks in it is unbearable and all I can think of is further surgery but when I am pain free I think should I really have it. My next surgery is another excision of endometriosis involving a bowel resection and a hysterectomy. I will need to have a ileostomy which will be reversed over time. I am so frightened to get this all done at once and feel because of my age if i should get this done or just wait for menopause is there any one who has had this done or just offer any advice please

Thank you Faith

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9 Replies
EndoJaz profile image
EndoJaz

Hi I am 46 too and have suffered since a teenager. Only diagnosed at 40. Have had excisions and hysterectomy but left ovaries in. Pain continues so have to either have injections or ovaries out. Been given until Feb to decide. Really not keen on jabs and like u, not sure to wait for menopause. Not nice decisions to have to make is it. X

Faithstar profile image
Faithstar in reply to EndoJaz

Thank you for replying , yes its just so confusing, hopefully you make the right decision. I just feel consultants don't really help and who knows when menopause will start. .

Dogmad6 profile image
Dogmad6

Menopause may or may not help. I had a hysterectomy and oopherectomy almost 18 years ago and still suffer with endometriosis. I am well past menopause. I don't know if that helps your decision but post menopausal endometriosis does exist for many.

A very difficult decision for you. xx

Faithstar profile image
Faithstar in reply to Dogmad6

Hi i have done a little research in to this and have realized that for some women menopause has not stopped symptoms . Thank you for informing me of this as i was led to believe that menopause will deffintley mean an end to Endo. x

Dogmad6 profile image
Dogmad6 in reply to Faithstar

Yes sadly there is a lot of misinformation out there, often peddled by doctors. Poor training is to blame I think. There are far more post hyst and post menopausal endometriosis sufferers out there than they would have us believe.

Sorry that this doesn't help you but at least you know that it won't necessarily be a definite cure. xx

Brambledoggy profile image
Brambledoggy

If it helps, read my profile. I’m now 50, haven’t had a period in 11 months and my life is transformed. I was perimenopausal for years with Endo (since a teenager) with many dreadful and debilitating symptoms. I opted to put up with hideous pain and complications, and after trying EVERYTHING for over 35 years, I went cold turkey. So, no more hormones, no more operating, no HRT…. And menopause is (for me) wonderful, despite all the rubbish side effects because I’m now pain free, touch wood. Problem is you don’t quite know when it’s going to happen and the waiting can prove unbearable for some ladies. Good luck with your decision.

Faithstar profile image
Faithstar in reply to Brambledoggy

Hi thank you for responding I read your profile , i just wanted to ask how are your bowel symptoms now. Like you I have also opted not to have no more hormonal treatment. My main concern is if I am one of the unlucky ones who has late menopause.

Brambledoggy profile image
Brambledoggy in reply to Faithstar

That’s how I felt. Endo is a total bummer. No one gets it. Only those who suffer understand totally. My bowels are 100% fine now I believe. No issues at all any longer. I did and do, find that diet has a huge impact and being super strict and eating all the right things and avoiding all the wrong things definitely has a huge impact. But it’s not easy and involves lots of self discipline and planning. I was perimenopausal about 47/48 (I think) and it couldn’t come soon enough. Other ladies dread menopause and I was praying for my periods to dry up. I suffer with night sweats, palpitations, anxiety etc but no more pain!!!!! Unreal. Touch wood. I hope writing this doesn’t jinx me!! I do know it isn’t the same for everyone and can still be an issue for some even after full menopause but I’m strong in my mentality and have suffered enough. Tried it all. I’m almost jealous others can take HRT to ease difficult menopause symptoms and have new found lease of life but the fact that I’m no longer in pain has literally changed my life. Hang in there, get solid advice from those you trust and on a wing and a prayer you might get lucky. Do stay in touch and let me know how you get on. Nina.

Vps1980 profile image
Vps1980

I so needed to read this today, I’m perimenopause and praying it ends with menopause xx

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