I'm wondering if anyone out there decided... - Endometriosis UK

Endometriosis UK

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I'm wondering if anyone out there decided not to have surgery after being diagnosed? I have severe Endo but very reluctant to have surgery.

HyggeLady profile image
12 Replies

No to surgery

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HyggeLady profile image
HyggeLady
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12 Replies
Princesspeach84 profile image
Princesspeach84

I haven't had lap yet but know I have endo, I tried to stall surgery by taking depo provera but my pains are that bad at the moment they effect my day to day life and I am hoping a lap can give me my life back. I am absolutely distraught that I have to have surgery as I'm needlephobic but I have no choice! Why are you reluctant to have surgery? xx

HyggeLady profile image
HyggeLady in reply to Princesspeach84

Hi and thanks for responding :) I am in a similar situation to you in that my pain is severe and I am also stalling. I really hate the idea of having surgery for so many reasons...one surgery leads to more surgery and that's not a life I want for myself or my loved ones but like you I may not have a choice as I hope to have children and I don't think it's possible in my current state. I really hope your pain gets better soon and hope the doctors can make you feel at ease about your fears. I have drastically changed my diet and taken up exercise in the hope that it will help my pain and I have actually noticed a difference after a few months but I am having to take the pill continuously in the meantime.

Princesspeach84 profile image
Princesspeach84 in reply to HyggeLady

Have you seen an endo specialist? They have lots of advice on how best to help. They don't push for surgery (at least mine didn't) I have children so my reasons for surgery is pain relief. I have seen many ladies who have found surgery has helped and a few who has said it's made them worse! It's the luck of the draw, but I cannot go on living like I am so I have no choice. xx

HyggeLady profile image
HyggeLady in reply to Princesspeach84

Yes that's understandable that you want to give surgery a try, hope it goes well for you.

No I haven't seen an Endo specialist yet, I saw a private doctor who was very keen to do surgery but I want to see an Endo specialist, so waiting on the NHS.

Princesspeach84 profile image
Princesspeach84 in reply to HyggeLady

I hope so too :) my private doctor is one of two of our area's endo specialists. Whenever I have been through NHS they give me normal gynos. Apparently only the gyno can refer me to specialist! What a mess about, so I paid to see endo specialist and she's got me in. My gyno (non specialist) wanted to give me lap years ago but I refused but I regret it now as I think I have endo in bowel :/ good luck whatever route you go down and feel free to msg me anytime for support xx

HyggeLady profile image
HyggeLady in reply to Princesspeach84

Thank you and good luck Xx

LISaprag profile image
LISaprag in reply to HyggeLady

Has the pill helped

HyggeLady profile image
HyggeLady in reply to LISaprag

Well its replaced excruciating pain which I would get for up to 7 days of the month when on my period with moderate pain every day. Not sure what's worse!

LISaprag profile image
LISaprag in reply to HyggeLady

What pill was it

HyggeLady profile image
HyggeLady in reply to LISaprag

Its a combined pill (mercilon). I also tried the mini pill...similar issue.

Faith27 profile image
Faith27

Hi! Sorry to hear your fears and concerns about surgery. I feel very afraid myself and it's a daunting prospect having to go under anaesthetic. That being said, while I'm 99% sure I have endo.. I've not been diagnosed as the only confirmed way for a diagnosis to be made as far as I have read from others and researched in depth is to have a laparoscopy. As we are struggling currently to conceive, its something I just have to do and reading personal stories from brave ladies on here is giving me the confidence to get things looked at! Many people have to fight hard to get their symptoms taken seriously so I'm also looking at it from that point of view. Endo can be debilitating and get worse as time goes on so while I'm young and fit.. I figured now is better than ever! No one wants to have an operation I'm sure but sometimes to get the right support and treatment, you just have to do what you got to do!

That being said, even people that are offered life saving treatments and operations for illnesses (not endo) will still refuse treatments so it's an individual choice and only one that you can make upon gathering and weighing up all of the medical info provided by a doctor or specialist.

Wishing you the best of luck for the future xx

wanwood profile image
wanwood

I probably wouldn’t have had surgery if it wasn’t for 2 things: a) a large endometrioma that was growing even larger and larger needed to be removed, forcing the issue somewhat and b) I was told that it might improve my chances fertility-wise, after 2.5 years of trying unsuccessfully already.

Don’t know if it’s helped yet xx

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