Life after my hysterectomy : Hi Just... - Endometriosis UK

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Life after my hysterectomy

Lou93 profile image

Hi

Just wanted to share my journey after having my hysterectomy in January this year, after suffering for years with adenomyosis and endometriosis, multiple surgeries. At the age of 27 it was a big decision but I knew I wanted my life back.

Was on zoladex for 6 months before my op along with Hrt seemed to be getting along with the hrt after the first few months as symptoms calmed down.

After my surgery it was a long recovery of 8 weeks then back to work, felt great to sit at my desk with no pains whatsoever, 5 months on I feel great and have finally been discharged from gyne.

I know everyone else’s recovery might not be the same as mine but I just wanted to share some positive news.

I will be on hrt until my 50’s and I’m ok with that as would rather deal with adding this to my daily routine than suffer how I did before, family and friends have commented on how they have got me back as before I was always in and out of hospital, work was effected even though I have a very understanding company so lucky in that way!

Hope everyone is well and stay positive Xx

28 Replies

That's such a good read 😀 Really pleased for you and hope that you continue to reap the benefits for a long time to come. Some times is so daunting to say yes to a treatment and its easy to find lot's of negative feedback. really refreshing to hear a positive outcome. Thanks for sharing!

Thank you I’m so happy with how’s everything has worked out ☺️ let’s hope it continues X

That's fab! Can I ask, did you have endo affecting your bladder or bowels or anything like that? I know a few ladies have said that because they had it on their bowels that even after the hysterectomy they didn't improve massively. Just wondering what stage your endo was? I'm considering a hysterectomy myself, not that the docs want to discuss it even though my husband has had the snip and I have 2 children. 30 this year so hoping that changes! Xxx

Lou93 profile image
Lou93 in reply to CryBaby91

Hi not officially however it use to cause problems with both bowel and bladder more so my bowel but had test and they couldn’t see any endo on there. Stage 2 from what they have said, after my surgery they told me my adenomyosis was the big issue as had endo removed year or so before this operation. I had mine done through private as nhs I wasted so many years asking for them to listen to me even though my gyne consultant works for nhs!! Have they discussed it with you then? Xx

CryBaby91 profile image
CryBaby91 in reply to Lou93

Thanks so much that's really helpful! I'm still waiting to find out if I even have endo, but the specialist is really confident he will find it and said my symptoms point to stage 3 or 4 :( which is scary, my husband is hoping I will improve after the op but I've seen so many say they haven't. Lovely to hear a positive story! Sadly no, one gyne said he wouldn't even do a lap because of my age! How ridiculous is that. When I mentioned having my tubes tied after my last child they said no 🙄 apparently I can't decide when I don't want more kids eh! Ridiculous. Xxx

Lou93 profile image
Lou93 in reply to CryBaby91

It’s a joke I battled with the nhs for years they did a lap in 2015 missed everything then few years ago had lap done and he found loads of it! Well I hope you get somewhere with them just keep pushing ☺️ xxx

LoneWolf91 profile image
LoneWolf91 in reply to CryBaby91

Same here I had the same crap from my gyne saying my age and wouldn't recommend a hystertomy cause of that reason which annoys me as many woman my age and younger have had it done

Lou93 profile image
Lou93 in reply to LoneWolf91

Yes I agree my insurance company had to have a board meeting about my case due to my age but was agreed due to all my on going issues and this was effecting my daily life like it does many! I waited best part of 2 years for him to agree after previous laps x

Bluesea7 profile image
Bluesea7 in reply to CryBaby91

Hi my endometriosis was stuck to my bowels and bladder as well , I can now go regularly every day to the loo, since I had my full hysterectomy ect . My recovery was a lot longer.

Lou93 profile image
Lou93 in reply to Bluesea7

How are you doing after your hysterectomy? Yes it was a good 3 months before I started to feel normal as in doing stuff but more or less free of pain after a few weeks.

Bluesea7 profile image
Bluesea7 in reply to Lou93

I'm doing good I do have menopause hot flushes, I've gained weight as well , I'm taking some well woman tablets to make sure I get enough vitamins ect as I've notice my feet and nails were more dry and I do stretches to help keep supple and you can loose muscle and bone mass when in menopause.

Hi thanks for sharing your story. Glad everything has worked out for you.Like you, I want my life back.

Sick and tired of operations, hospital appointments, nurse appointments for bloods!!!

I am on my third month of decepeptyl, massive improvement in pain and only had a few waves of pain which is nothing compared to before. I have had some bleeding though.

On HRT, what a difference it has made to me, feel like the old me is coming back slowly.

You had a total hysterectomy? I want to leave my ovaries in x

Hi oh I bet you do we have spoke many times before and I know you were waiting for things to get out in motion, glad you’ve had some improvement. Yes had everything removed as he said I would only have to have further surgery later down line to remove them as they were causing many issues xx

Okay, that makes sense. Have you ever had to have a blood transfusion?

I am getting one this week x

No I haven’t, have you got a date for surgery? Xx

Hi no not yet, I will have a consultation in July at some point with the gynaecologist then decide where to go from there. It’s definitely a hysterectomy as no other options left and told the decepeptyl injection mimics a hysterectomy, symptoms are way better on this injection. So guessing a hysterectomy is the right thing for me. Just can’t decide if I should leave ovaries or not x

What HRT are you on?I take Evorel conti patches x

Ah ok see what they say but it looks like there pointing you that way, it’s your choice and the consultant I suppose can you not decide? X

Yep defo told me I need a hysterectomy but to make sure it works I need the decepeptyl injections first. They said they would leave ovaries in if I wanted. Don’t want to go straight into the menopause yet. Want surgery and then to feel better without having to cope with something else (menopause) x

Yeh I understand where your coming from think the idea of the injections are that it takes your body into menopause so after I had my op I continued my HRT gel and no side effects of menopause Xx

That’s fab news for you and so pleased as it’s a positive story. I will keep you in mind when I am having a hard day and knowing things will get better xx

❤️

Hi I got told by my gyne which I'm very angry about it that apparently she said I'm to young and I'm 29 to have a hysteromy 😡 and that she wants the best thing for me which is the marina coil which I don't want at all .... I've been struggling alot with very heavy prolonged periods for the past 8 years since having my 2 children! But recently I've been on norethisterone for 1 year 6 months but I'm now of them as of last month and I've only had a short bleed for 6 days which has been weird to me as normally I have extreme ones but I want a hysteromy due to my periods and also cause I can't deal with them anymore due to them being very heavy and prolonged! It's ruined my life as it stops me doing day to day things and going out the most due to heavy leaks..... I've tried contacting my gyne but she hasn't replied to my calls 😔😪😕 I should be allowed a hysteromy and age shouldn't be a problem

Lou93 profile image
Lou93 in reply to LoneWolf91

Oh I’m so sorry to hear this… I don’t know if I got lucky as went private but I had to have everything done before this as was last option. I didn’t want any kids and was adamant for years this was the case!! Drives me mad how they tell us how to live our lives!x

LoneWolf91 profile image
LoneWolf91 in reply to Lou93

Tbh same here I don't want no more kids 2 is enough and tbh I'm just so fed up and sick to death of dealing with periods now esp having to stay in for 2+ weeks till it ends it's really bad ..... I was on norethisterone for 1 year 6 months straight and came of them last month on the 27th and had a very short withdrawal bleed which I've never had before as normally there proper HEAVY etc but I've been off and not had a period since the 6/7 th of this month

Lou93 profile image
Lou93 in reply to LoneWolf91

I bet you are I use to have spells of bleeding for months on end but always flooding ended up in hospital so many times! I went on the depo for a second time around completely stopped my periods for 3 years was so good! I bet you’ve tried all sorts too lots have.

That’s brilliant glad you’ve got you’re life back nice to know there is light at the end of the tunnel xx

Lou93 profile image
Lou93 in reply to SK2021

Thank you me too Xx

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