Returning endo

[Shazmo]

Hy everyone at age 36 I had a complete hysterectomy overies gone also but now18 years later feels very much like Endo is back on my left hand side pelvic,back and strangely my left hip, i have been reading a lot about bowel endo and knowing my body it feels like I'm right back to endo. I would appreciate it if anyone knows this is possible as my doctors think I'm mad as endo can't grow without a womb and overies ,

Thanks in advance shaz

[Heloo85]

Endo can grow without a womb and ovaries, a full hysterectomy is not a cure for Endometriosis! Fat cells can create estrogen, to start off with...

But, it may not be Endometriosis, and quite possibly adhesions! Both cause pain, and if you don’t have Endo it’s likely you have adhesions from your surgeries! Adhesions can grow overtime!

An MRI will rule out Endometriosis but it takes a keen eye for it to rule out adhesions, especially after your hysterectomy (organ out of place is a sign)

Your Dr is doing the good old ‘fob off’ that they’re well trained to do!

Best of luck xx

[Lubu in reply to Heloo85]

When you had your hysterectomy, did you start HRT?? As HRT has estrogen in it and although a very small amount can still cause problems. Heloo 85 is spot on. Scar tissue from previous operations especially your hysterectomy can cause severe pain. I had a full hysterectomy at 38 and 7 years on I’m still in excruciating pain every day due to endo and scar tissue due to 8 operations. Don’t let them fob you off, ask to be seen by a gynaecologist specialist in endo. If if you look on endometriosis uk or something similar website, it will give you this information to show to your dr. Many GP’s don’t know much about endo, even gynaecologist who haven’t specialised in endo don’t know enough about it. Especially as they are saying in a round about way that your hysterectomy should have cured you.

I was misdiagnosed for 20 years and by the time I was diagnosed, I was covered in it. So for some people a hysterectomy works but it all depends on how much and where the endo is. Even a tiny bit can cause excruciating pain. Everyone is different. You MUST keep on at them as something isn’t right .

Good luck

Xx

[Heloo85 in reply to Lubu]

I am a few years behind you! I was diagnosed at 31 after being fobbed off for years! I had severe disease too! Had major surgery for my first lap, just about to get my second one which is going to be a hysterectomy at 35! I have already been told by my BSGE gynea that it likely won’t improve my life! Ooh the joys.... So next I’ve going to deal with menopause, adhesions, and likely endometriosis! Severe Endo (DIE) can create its own estrogen, in order to keep itself alive! You can get hormones from foods! Meat & veg.. And as you stated, HRT!.... I think the adrenal gland can create estrogen too!... Yep, a hysterectomy isn’t a cure at all! Xx

[Lubu in reply to Heloo85]

Oh I’m so sorry to hear this, I really am. If I have any advice for menopause when you are so young, get lots of informationon possible changes as that way you know if your HRT is strong enough. It took me about a year to get the level right. Get yourself on a early menopause chat group especially if you can find an endo one as getting advice from people who have been through similar can be invaluable to your mental health more than anything. Best of luck and I promise it’s not all bad xx