Help 😢: I was 16 (now 27) when i started... - Endometriosis UK

Endometriosis UK

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Help 😢

Chelclittleonesmith profile image

I was 16 (now 27) when i started with endo symptoms and didnt get diagnosed till i was 21 did any one else suffer or suffering with it this long and still no where in finding anything that helps with the side affects and pain ?? Ive now been told i could also have andomeosis after have my 8 ovarian cyst removed along with my right ovary and falopian tube.

I have had numerous contraceptive pills, the c injection, m coil and the zoladex injection and nothing so far has helped, im just expected to carry on with tramadol pain killers, iron tablets and which dont help when pains & bleeding are at there worst. I was very lucky to become a mummy 18 months ago (was told i wouldn't be able to conceive natrually at 19, then told my pregnancy wouldn't last term well go over 6 weeks then 12, and i went ten days over 40weeks 😁) and i really hate that i seem to be getting worse and no where with managing the endometriosis and its like my gps have given up but refuse to give me a hysterectomy.

Tia

Sorry for the extra long post xx

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Chelclittleonesmith
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6 Replies
JEWELS profile image
JEWELS

Hysterectomy unfortunately is not a cure,your pain still might remain. although saying this I have no problems since mine.Acupunture is amazing for helping control pain , is this something you could try?

beckymonique profile image
beckymonique

You may need to look into private medical care. Have you looked into excision at all?

Chelclittleonesmith profile image
Chelclittleonesmith in reply tobeckymonique

Excision ?? Xx

beckymonique profile image
beckymonique in reply toChelclittleonesmith

It's different to laparoscopy, I don't really know 100% details, but with a laparoscopy there is more chance of regrowth, plus it's an old style surgery comparatively, but with excision they use a high powered beam of CO2 gas to "laser" off endometrial growths and (from my research) there's only 7% chance of regrowth.

Tillyfloss profile image
Tillyfloss

hi. I'm sorry you're having such a hard time finding something that helps you. Have you been treated at a bsge centre? Ask your gp to have a referral to the the pain team, I saw them in march and they helped me alot, I was on the right meds just not taking them at the right time.

have you tried diet change's?

I know how exhausting the constant pain is and all you can do is keep going till you find something that helps.

take care xx

Hiya sorry for the late reply, ive been to pain team and tried different pain management and diet plans to but i rat healthy and excersize when i can. Im currently waiting for more scan results from newcastle rvi. I had numerous scan over the years and 8 ops now and the scan last week, the lady ask what it was specifically for i said ive been struggling with endometriosis for a long time and just had my right ovary removed, im not panicking thinking the rvi and just gonna sack it all off due to the woman saying she could see no problems ehat so ever certainly no endometriosis (it was good day for me that day) yes being told its not there is fantastic news but what does that mean for my further treatment as i have just been referred to that hopsital, because it has been and is there again now ???..... xx

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