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

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Endo returns way to quick! So fed up!

pixie95 profile image
pixie95
ā€¢14 Replies

Hey everyone šŸ‘‹šŸ¼

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, itā€™s unreal. I didnā€™t think it could do this after the op.

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

Iā€™ve been in a&e so many times now Iā€™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.

Iā€™m in so much pain on my right lower hand side, that no matter what I take it just doesnā€™t help. Iā€™m currently on tramadol, paracetamol, the pill, orimorph.

The doctors keep on saying to go have a baby, but my partner of 7 years isnā€™t ready for a child yet. I donā€™t want to pressure him into it. But in that respect I donā€™t think I can wait so I think a hysterectomy might be a possibility? Because I canā€™t live with this. Iā€™m having to look at buying a wheelchair because my condition just gets worse.

Iā€™m sorry this is a heck of a lot of me whining and moaning, but Iā€™m so fed up, I needed to get it out. Iā€™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

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emcoll profile image
emcoll

I know exactly how you feel. Iā€™ve had this since I just turned 11, Iā€™m now 18 and theyā€™re saying the exact same to me. ā€œHave a baby and youā€™ll be fineā€. I just look at them and say ā€œIā€™m 18 for god sake..I shouldnā€™t be forced into pregnancy when Iā€™m not ready.ā€ 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 theyā€™ve done nothing since. Itā€™s taken me 9 months to get back in to see my gynaecologist, who is just getting fed up with me. Itā€™s now looking like Iā€™m going to have to have surgery again, but this time itā€™s a bigger op.

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

cmbxm profile image
cmbxmā€¢ in reply toemcoll

They told me to have a baby when I was 16!! Itā€™s absolutely disgusting how they try to force pregnancy on you!! šŸ˜” x

pixie95 profile image
pixie95ā€¢ in reply tocmbxm

I canā€™t believe they telling you to have a baby at 16! Thatā€™s ridiculous! I donā€™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

pixie95 profile image
pixie95ā€¢ in reply toemcoll

I think itā€™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 Iā€™m going through, thank you for your reply, and I hope they help you! Iā€™m 22 and weā€™re at no age that we should be forced into having children if we donā€™t think itā€™s the correct time! Cxxxxxx

cmbxm profile image
cmbxmā€¢ in reply topixie95

I am in no position to have children and the gynaecologist said ā€œit would help though, so why not try thatā€ I was furious and refused to let her touch me and insisted on seeing another gynaecologist and Iā€™m even still being fobbed off now šŸ™„ beyond fed up with it all, women arenā€™t here to churn out babies anymore, our grandmothers didnā€™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 šŸ˜³šŸ˜‚ but itā€™s got to be said! xx

pixie95 profile image
pixie95ā€¢ in reply tocmbxm

Itā€™s only said that it ā€œcouldā€ help to have a baby. Not that itā€™s going to cure the whole problem, I can understand when they say that you donā€™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 babyā€™s, going back raging that there still in pure agony because it didnā€™t work! šŸ˜‚ itā€™s a good job with think with our brains! Itā€™s always good to have a rant, itā€™s making me feel better! šŸ˜‚ xxx

cmbxm profile image
cmbxmā€¢ in reply topixie95

What do they say if you have a baby and youā€™re still in pain? ā€œHave another try again?ā€ šŸ˜‚ ā€œDoctor Iā€™m 6 kids down and still in agony, what do you suggest?!ā€ ā€œSorry Mrs Legswideopen try for that lucky number 7 and come back and see me then if youā€™re still in pain!ā€ Dread to think what they actually suggest šŸ˜³šŸ˜‚ x

pixie95 profile image
pixie95ā€¢ in reply tocmbxm

šŸ˜‚šŸ˜‚šŸ˜‚šŸ˜‚šŸ˜‚ this made me laugh so much!! Itā€™s something I could see the drā€™s doing that aswell!! A laugh makes things feel so much better, thank you sweet xxxxxxx

cmbxm profile image
cmbxmā€¢ in reply topixie95

No worries hun, my attitude is if I donā€™t laugh about it Iā€™ll cry and laughter is the best medicine so I prescribe it to myself in bucketfuls! šŸ˜‚ā¤ļø x

Lovisa profile image
Lovisa

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.

pixie95 profile image
pixie95ā€¢ in reply toLovisa

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

Iā€™ve got no advice on what to do, but get your frustration over endo retuning quickly. Had my second lap and itā€™s back and more of it- Iā€™ve been ttc 6.5 years and lost a baby after my first laparoscopy - pregnancy didnā€™t suppress my endo sadly. Iā€™ve now got to see a colorectal as itā€™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 ā˜¹ļø Itā€™s such a awful disease isnā€™t it hun.. sorry to hear youā€™re having a difficult time xoxo

pixie95 profile image
pixie95ā€¢ in reply to

Iā€™m so sorry to hear you lost your baby šŸ˜” 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 didnā€™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

endopains profile image
endopains

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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