Does any1 have the same as me help - Endometriosis UK

Endometriosis UK

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Does any1 have the same as me help

leannelouise profile image
12 Replies

I was diagnosed at 19 had me first operation when 21 2 remove endo an chocolate cysts then came back worse so 2 years ago I had another operation where they removed my ovary an tube yet 2 years down line I had scan yesterday an was told I have cysts on my only ovary left and 1 inside but also my tube has some in I have 2 wait till next week to find out whats next but its reckon my head waiting.

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leannelouise profile image
leannelouise
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12 Replies
K_Nxx profile image
K_Nxx

Hello,

I am 26 and recently got diagnosed, I had my first Lap 4 months ago and had to lose some of my left ovary as I had a 15cm Cyst and it was stuck to my bowel. They left a cyst in my right ovary because I want to have children and if they removed it my fertility would have been diminished.

I'm sorry you are going through this it isn't easy, but at least you are not alone and if my calculations are correct we are of a similar age too. Don't worry yourself to much :) xxx

leannelouise profile image
leannelouise

Thank you for replying yes am 26 I have stage 4 endo wit it also on me bowels my ovary is stuck on me bowels. From me scan they didnt think it could be saved but have 2 wait till next week to see what is said. Am just worried as I was told having both ovaries removed put me at risk of heart failure an osteoporosis coz of age I cant have kids av already been told that as hard as it is av accepted that. X

spammie85 profile image
spammie85 in reply to leannelouise

hi im 28 and have stage 4 endo had a lap 3wks ago n they removed what they could I had chocolate cysts on left ovary so tht ovary has been removed and the endo had stuck my bladder womb bowel and ovary together I had endo on my kidney and ureters aswell and had to have a stent put in. I got told in December that my only option really is a total hysterectomy but I have concerns ova the effects of early menopause and also cant decide because there is no guarantee that the hysterectomy will stop it coming back as they may not remove it all and im wondering if there any point in going ahead with it if I am still going to be in pain etc a few yrs down the line. I also thinkin well what have I got to lose it could work n if it don't im no worse off unless the menopause causes other problems. - sorry for long winded answer etc but I haven't found ne1 tht is about my age and having the same dilemma as me.

leannelouise profile image
leannelouise in reply to spammie85

It hard isn't it. See I see it as av surly got 2 be in less pain then I am ye its stuck 2 other organs but cant be as bad. It scares me about heart failure an osteoporosis at a younget age then what I might have got it at. Have u still got 1 ovary left? Do u have kids I started ivf few yrs back but it was stopped when they thought 1 of my cysts was cancer. Been a hard few years one minute I can have kids then I cant the other day confirmed it. Xx

spammie85 profile image
spammie85 in reply to leannelouise

I have my right ovary left coz for some reason my endo upto now Is only attacking the left of my body left ovary left kidney left ureter left hip left side of womb bladder n bowel. I am lucky n have two children. This is helping me with my decision as one of my kids is disabled. I find it exhausting now looking after him and he is only going to get worse so the fact tht I could b in less pain is making me think yeah do it coz obviously I need t b able to look after my son. But the other thing playing on my mind is the chance of osteoporosis. I am already on crutches as the endo has affected the ligaments n nerves in my left hip and don't like thought of getting osteoporosis as my son is going t o need a wheelchair and I need t be able to push it obviously. Sorry again for long winded answer. I think my decision has been easier than urs as I have two kids and need t try everything so can look after my son. Hope u are ok n keep chin up all endo sufferers r superstrong women.

leannelouise profile image
leannelouise in reply to spammie85

I totally agree us endo suffers always cum out stronger. I hope everythin goes well 4 u xx

spammie85 profile image
spammie85 in reply to leannelouise

Thanks n same goes for you hope u get sorted.

Honey34 profile image
Honey34 in reply to spammie85

Hi I’m really sorry to hear you are going through this. After 14 laps & being infertile, I had a total hysterectomy at 35 years old. The worst part for me was the menopause. It still is. I felt very lonely as I didn’t really have anyone to ask about the menopause due to my age. Had I known what I know now I may not have had it. Also please know it does not cure endometriosis. I am 8 weeks post op for rectovaginal endometriosis & it has been a struggle to recover. I know it’s a very personal decision to make & I wish all the very best x

reese28 profile image
reese28

Hi ..we are the same I have surgery done last May 2011 removed my right fallopian tube ever since when I have period I have a bad pain, Last Dec.2013 diagnosed again with 10&7 cm cysts, I think no cure for endo only stop the pain..

leannelouise profile image
leannelouise in reply to reese28

What are they doing about your cysts are they rmoving them xx

reese28 profile image
reese28

Hi ..leannelouise I hope your not in pain now, yes I am waiting for surgery my gyn sent my all report to my GP & he will set an appointment for surgery I need to wait 3 to 4 weeks I have blood test done & MRI abdominal & pelvis scan the 2 cysts they are stuck together I suffered in pain for 2 months now..

leannelouise profile image
leannelouise

Hope ur well reese am dreading 2mara I see my gynecologist I really do think it will also be a op 4 me but I go on holiday in may an I rwally need the holiday just hopen it doesn clash so I can fly. Any news on ur date yet. Are u scared xx

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