Endometriosis UK

I don't know anymore what to do

Hi I've had endo since I was diagnosed at 18, and was told in recovery i wouldnt have kids. but have delt with the crippling pain since I was 11, after at one piont being told it was all in my head! Now 30 with a 6 yr old very lucky indeed I'm going back for my fourth lap as the right side was a mess on scan and in feb after ct scan told I have a 34mm cist no one seams to know whats going on I'm so tired and in pain its maddness my hip is constanly messing up and I'm having issues with bowls to.

the forth is booked in for next month but I can't see light at the end of the tunnel I just want to curl up in a ball and cry. My horemones are all over the place and gyne consultant said ill prob have to go for ivf if I want more kids sorry to rant had to get it out its only tip of ice burg really

Has any one else had this issue im worried of the out come of this op and don't know what to do

3 Replies

Hi Hunni it sounds like your really going through it feel for you, I had really bad periods from age of 11 ibs diagnosed at 13, I'm 43 now and since then any pain I've had over the last over 20 years has been put down to my bowels I've had suspected appendicitis only over the last few months have I really started to get even more horrendous pain in right side, the radiographer says I have adenomosis and also my right ovary is not mobile, having horrendous days of bowel problems with pain in hip and back, is this how you feel and can sympathise with your hormones feeling emotional and fatigued a lot of time, this kind illness isn't looked into quick enough as doctors are quick to dismiss it, really hope it all goes well for you x x


Hi thank you for replying yeah its making life difficult people think I'm making it up had the suspected appedicitus at 20 ir 21 I for get its been on going but the pain I'm going though is nuts I'd rather do my bad labour all over again lol suppose just have to wait and see what the gyne bloke says when he does op just scared really as its getting annoying and they told me at 22 it was get pregnant or have histerrectomy so I don't know anymore


Yes me too, complete turmoil as to whether to have more surgery which has a high chance of making adhesions worse. I have right sided pinchy burning gnawing pain which effects my right hip down my right leg, low back pain and stomach and pelvic pain.

I have tried Zoladex injections, Mirena, Hormone therapies, pain relief, investigations, surgery after surgery and now I am menopausal and in theory endo dies off but the adhesions form where inflammation has been leaving you with sticky scar tissue adhering adjacent organs together. My ovary has been stuck to bowel and stuck the other side of my pelvis too, Even the fallopian tubes which were removed due to endo damage, stuck. The stumps glued to my ovary and bowel and endo and adhesions moved into my stomach. I have Diverculitis, small Hiatus Hernia, Prolapse and some arthritis in my right hip so I spend many a dark night lying awake twisting and turning in pain, wondering 'maybe it's this, maybe it's that' and if I have more surgery it may worsen adhesions but then again it might ease the pain, who knows! The Gps also seem to be scratching their heads as to my best next move, it is horrible not knowing what to do next. Meanwhile I am left in pain with symptom after symptom, fatigued and utterly in despair.


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