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Endometriosis UK
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Endo returns way to quick! So fed up!

Hey everyone 👋🏼

had my op on 12/12/17. They burnt away deep spread endo that was up to the lining of my bowl at the time, around my ovaries sticking them down, and removal of cysts on ovaries and Fallopian tubes.

Within 4 weeks the endometriosis has returned!!!

I have been in so much pain, it is growing so fast, it’s unreal. I didn’t think it could do this after the op.

Now my bowel is blocked, my stomach is so swollen I look pregnant, I’ve been bleeding nonstop for 5 weeks, I’m struggling to walk, I usually manage to get to sleep at 6am for a few hours.

I’ve been in a&e so many times now I’ve lost count. When I was in a&e and emergency gynie Monday night, they have told me that the endo has spread to my bowel.

I’m in so much pain on my right lower hand side, that no matter what I take it just doesn’t help. I’m currently on tramadol, paracetamol, the pill, orimorph.

The doctors keep on saying to go have a baby, but my partner of 7 years isn’t ready for a child yet. I don’t want to pressure him into it. But in that respect I don’t think I can wait so I think a hysterectomy might be a possibility? Because I can’t live with this. I’m having to look at buying a wheelchair because my condition just gets worse.

I’m sorry this is a heck of a lot of me whining and moaning, but I’m so fed up, I needed to get it out. I’ve had these issues since I was 13, and I just want to live some what of a normal life.

Much love to all you strong women xxxxxxxxx

14 Replies
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I know exactly how you feel. I’ve had this since I just turned 11, I’m now 18 and they’re saying the exact same to me. “Have a baby and you’ll be fine”. I just look at them and say “I’m 18 for god sake..I shouldn’t be forced into pregnancy when I’m not ready.” I have no problems with people who do have babies early, I think they do a tremendous job, but to me it just seems like an excuse the doctors use to get rid of us. I had my op on April 19th last year. Within two weeks it started returning and they’ve done nothing since. It’s taken me 9 months to get back in to see my gynaecologist, who is just getting fed up with me. It’s now looking like I’m going to have to have surgery again, but this time it’s a bigger op.

Hope things start looking up for you soon, we all know how hard it is. Stay strong xxxx

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They told me to have a baby when I was 16!! It’s absolutely disgusting how they try to force pregnancy on you!! 😡 x

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I can’t believe they telling you to have a baby at 16! That’s ridiculous! I don’t see how they can get away with that, they should be looking to help you at that age, not fobbing you off!!! Bless you Hun xxxxxx

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I think it’s all just getting on top of me, but sometimes I just need to get it off my chest to people who understand physically what I’m going through, thank you for your reply, and I hope they help you! I’m 22 and we’re at no age that we should be forced into having children if we don’t think it’s the correct time! Cxxxxxx

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I am in no position to have children and the gynaecologist said “it would help though, so why not try that” I was furious and refused to let her touch me and insisted on seeing another gynaecologist and I’m even still being fobbed off now 🙄 beyond fed up with it all, women aren’t here to churn out babies anymore, our grandmothers didn’t fight for us to have careers and rights just for doctors to shut us down when we ask for help and insist on us having babies to cure all our problems! God forbid a completely impressionable young girl goes to see a gynaecologist in pain and takes their word for face value and starts trying for a baby under the impress it will help! It should not be suggested by doctors full stop!!! In a proper ranty mood today thanks to pms 😳😂 but it’s got to be said! xx

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It’s only said that it “could” help to have a baby. Not that it’s going to cure the whole problem, I can understand when they say that you don’t want to be trying for a baby to late because it could be to late by then, but omg could you imagine if everyone listened to them? It would be a world of 16 year olds with baby’s, going back raging that there still in pure agony because it didn’t work! 😂 it’s a good job with think with our brains! It’s always good to have a rant, it’s making me feel better! 😂 xxx

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What do they say if you have a baby and you’re still in pain? “Have another try again?” 😂 “Doctor I’m 6 kids down and still in agony, what do you suggest?!” “Sorry Mrs Legswideopen try for that lucky number 7 and come back and see me then if you’re still in pain!” Dread to think what they actually suggest 😳😂 x

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😂😂😂😂😂 this made me laugh so much!! It’s something I could see the dr’s doing that aswell!! A laugh makes things feel so much better, thank you sweet xxxxxxx

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No worries hun, my attitude is if I don’t laugh about it I’ll cry and laughter is the best medicine so I prescribe it to myself in bucketfuls! 😂❤️ x

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Sometimes the endo is not all removed so what you could be feeling is old endo flairing. I had my 3rd surgery roughly less than 9 months ago and I'm already booked in for my next lap as the consultant believes not all the endo was removed.

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I think that is what it is, you just never think it will aggravate you again so quickly! The joys of endo! Thank you for you reply cxxxx

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I’ve got no advice on what to do, but get your frustration over endo retuning quickly. Had my second lap and it’s back and more of it- I’ve been ttc 6.5 years and lost a baby after my first laparoscopy - pregnancy didn’t suppress my endo sadly. I’ve now got to see a colorectal as it’s on my bowels. Have you considered having drugs to put you in a menopausal state which are meant to prevent re growth? My gynae said endo can and often grows back and is incurable ☹️ It’s such a awful disease isn’t it hun.. sorry to hear you’re having a difficult time xoxo

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I’m so sorry to hear you lost your baby 😔 I do hope you get your dream of becoming a mom, you have been waiting long enough, you deserve to have your baby! I did try the injections that put me into a menopausal state, but it didn’t agree with me, so I had to come of them... it is such a horrid disease, I just hope one day they do eventually find a cure for it! Thank you for your reply hun, and I wish you the best of luck xxxxxxxx

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I was told I would never have children at 21 as mine was so bad. They said I could try before my hysterectomy. I've had two babies and breastfed between so for 4 years my body was 'pregnant' and now I'm apparently free of endo. Considering it would grow back before I'd recovered from surgery and I was having multiple surgeries a year and now I don't need surgeries, am rarely in pain and I'm able to walk I think it's been a success. Definitely more successful than the induced menopause I had before.

It's been a massive sacrifice and hard work. But my life with children is easier than my life with endo. I'm not saying you should do it. I did it because having children was what I wanted most in life but I just wanted to give the other perspective.

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