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Endometriosis UK
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Hysterectomy

I'm curious - is there anyone on here under the age of 30 who has been granted a hysterectomy? What was it about your situation that persuaded the doctors to agree?

I'm desperate for one but my family keep telling me no doctor will agree to it due to my age. Would love to know your success stories!!

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hi. Hope you're having a comfortable day. I was told at 33 I needed a hysterectomy, but a bsge specialist operated and saved everything ( we were hoping to have another child). Whilst I was in a 32 year old was having one. It unfortunately doesn't mean that the endometriosis won't be a problem it will depend upon were it is and the stage. Do you have a pain management plan in place? For me diet helped and reduced the flare ups. Are you under a general gynecologist or a bsge specialist? Xx

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Hi,

Thank you, today has been not too bad! I have no pain management as nothing helps, and to be honest I'm barely eating as is so I don't know how to change my diet!

I don't currently have anyone, doctors don't want to assume anything so am awaiting diagnosis x

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hi. What have you tried so far? My endometriosis is in various places but causes a lot of bowel issues, by avoiding gluten ( even gluten free) I reduced the pain quickly and just experimented, so I can eat certain bread with no problems, I can't have pasta at all or pizza as this flares it up.

getting diagnosised can be battle but I hope you get there.

xx

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Well I'm basically vegan and have been living on soup and crackers for a month or so.

Oh that's interesting that bread is okay but pasta isn't. I did think it might be gluten as last time I was majorly ill it was after pasta but I've had plenty of bread since and been fine!

Thank you :) x

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Hi there,

Im 28 and have no children and I am currently 10days post total hysterectomy and removal of both ovaries and tubes.

Unfortunately, when making the decision for this operation age is a factor and there are lots of reasons why. A hysterectomy carries risks for anyone but someone under 30 can have greater risks for the rest of their life.

Also, as I hope you already know a hysterectomy might not even help with the pain and wont cure the condition.

Are you under a gynae consultant currently? What have you tried already??

If you want to discuss privately I am happy to tell you my story. Xxx

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Hi, I'm still fairly new to the possibility of endometriosis, mainly because I'm in panic mode. This is the better of a couple of things it could be. So currently I am undiagnosed so don't have anything more than a normal doctor, and what I've tried so far for pain management is drugs and nothing helps.

I am interested in your story but I don't know how to discuss privately so if you do, please go ahead! x

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Ive sent you a message hun. You should be able to find it in your notifications (the bell at the top).

If you cant find it let me know. X

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Hi livvi_livvi, just read your reply and I honestly cannot say how brave you are! I’m 35 and have been diagnosed with adenomyosis (as well as endo) and the only treatment is a hysterectomy. I don’t have children and hope that one day I will be a mum. I can’t make that decision yet. I’m probably being out of order here, was it a hard decision for you? Did you want children? Sorry for asking, I’m at a point now where I’m always crying when I’m on my own cause I think it’s a shitty decision to have to make x

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I can't say much else to help, but sending love and hugs your way xxxx

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Hiya, aww darling.

It is and was a tough decision to make. Ultimately, it became my decision between do I want to try to be out of pain or not?

However, Ive got to a point before the operation where the endo has cost me the majority of my life. To the point that even my consultant gynae said I have no quality of life.

I havent been in relationships due to the pain caused by the endo and therefore it was an easier decision for a hysterectomy. As I know without it I cant date as I cant have intercourse due to pain.

If you want to chat then feel free to drop me a message?

Xxx

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That would

Be lovely thanks x

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Hi, i would like to know how you feel now after the hysterectomy. Il 29 years old nothing works for me but nobody wants to do this surgery for me. Message me in private to talk please. I really want to do it.

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Hi, I haven’t posted on this site for years but get a few emails which prompts me to read a few stories. I am so sad when I read how horrific this terrible disease can be for some people & in the main I feel like one of the extremely lucky ones. To tell you about of history, I am 43 years old (god how that’s a shock writing that!) & was diagnosed with endo, chocolate ovarian cysts & blocked Fallopian tube’s way back in about 2001. I was told very little chance of natural conception. At the time, a huge bombshell as I got married in 2000 & children were definitely in the plan. Now, I’m a mum of a 13 year old son (the result of a 2nd ivf cycle) & a 9 year old daughter (conceived naturally against all odds!)

I lived with all the usual pain of endo on a daily basis for years. It affected my bowel too as scar tissue was found in this area. It calmed down both times after having my babies significantly but probably only lasted a year. I last went to see a gyney in about 2014 & was advised to have a full hysterectomy. I must point out, other than investigations, I have never had any surgery or been offered any other treatment or pain management. I was not happy with just going ahead without trying other things first. Especially as I well know that a hysterectomy doesn’t always cure the symptoms of endo & that I’d then need to take HRT which could cause more problems.

I now take cerazette & have been completely free of all symptoms inc periods for the last 5 years. It’s literally changed my life. I am fully aware this probably doesn’t suit everyone, maybe there’s a few that have tried it, or something similar, but it has definitely worked for me & at 43, I’m hoping I can continue taking it until menopause. I wanted to just put this out there as it might just help someone of at least give hope sharing my story.

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Hi Emjay, thank you for sharing. It's good to hear about someone out there who the medicine works for and operations aren't necessary. Thank you! x

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I have been offered one I’m 25 have two children and have been told to have my next baby as soon as possible so they can do the procedure x

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