Life after hysterectomy : Thankyou for the... - Endometriosis UK

Endometriosis UK

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Life after hysterectomy

Percey profile image
10 Replies

Thankyou for the add...

My heart goes out to each off you beautiful ladies whom are suffering every day ♥️

I had endo stage 4, which was diagnosed after multiple laps. My endo was so fast growing and attached to my bowel I ended up having an emergency hysterectomy taking ovaries too in 2001 at the age of 28 years old, needless to say NO children which I was so desperate for 😥.

Now left with so many adhesions and scar tissue, with pain and bloating, I still live in fear as consultant explained at that time I was so riddled with endo they could only confirm they had removed 98% of the terrible disease and that it could start to grow again!

Has anyone else been told theirs could come back ??

Or experiencing any symptoms?

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Percey profile image
Percey
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10 Replies
melanies profile image
melanies

Unfortunately hysterectomy is not a cure for endo and it can return. If you have had 18 years without any symptoms- that is fantastic! Are you concerned about symptoms you have now? I’m in similar situation. Had stage 4 endo when I had a hysterectomy (including ovaries) in 2015. Bowel and bladder both affected. Surgeon managed to remove everything he could see at the time and I’ve had 4 glorious years pain free! Just recently started having some pelvic pain again and trying to decide when to go and see the dr about it. It is a horrible disease!

Percey profile image
Percey in reply to melanies

I have been experiencing pain and bloating for approx last 4/5 years. On recent visit to A&E doctor asked if I had been having any problems from endo since my hysterectomy.

Been trying to ignore the fact it could be back.

I am like you been unsure where you see GP.

Sweetyassi profile image
Sweetyassi

Hi Percey,

I had a hysterectomy done years ago but kept my ovaries. I was told my endo wouldn't return. like you I had stage 4 endo and had had multiple surgeries to remove endo and adhesion but my endo was fast growing. 2 years ago I removed both my ovaries and developed compartment syndrome in my right calf straight after my operation and had to have 4 further operations on my leg. So not only was I healing from my stomach operation but also my leg. I'm going through menopause and took HRT tablets and regretted it my endo is back and so are my pains. I'm finding it difficult to eat solid foods as that causes me pains.

Life with endo is a struggle.

Sweety.

Percey profile image
Percey in reply to Sweetyassi

Bless you, endo sucks x

Hope you feel better soon

Sweetyassi profile image
Sweetyassi in reply to Percey

Thank you, hope you feel better soon 😊

angiecxx profile image
angiecxx

Hi,I hope you are ok. I had a full hysterectomy two years ago and I'm having problems and alot of pain. It's my bowels and bladder that causes the most pain. I didn't know that it could come back, it feeds off hrt. So many people say it never goes away, even after surgery it lies in dormant and I asked my specialist if that was true and he said yes unfortunately it does 😕😕. Big hugs my lovely 💛💛xx

Percey profile image
Percey in reply to angiecxx

I have troubles with bladder and bowels. I have been on HRT since 2001 😬😬

Hope you are ok, sending hugs and love to you xx

Hi percey,I had been suffering since the age of 11 (now 38) with heavy bleeding and pain.

And in those days was just told to put up with it. About 15 years ago I was told that I would never have children and I had pcos. Gynecologist put me on metformin...told me to lose weight!

8 years ago I had my first little girl!! Best I've ever felt being pregnant!! 6 months later I convinced again!

Unfortunately 3 years ago much like your self I was having pain and after a bitter fight as I knew that there was something drastically wrong as I was having bowel problems I had a total hysterectomy key hole.

I can honestly say it was the best thing I have ever done!

But saying that,I'm now having the same symptoms I had but without the bleeding prior to the hysterectomy,so I'm undergoing tests to see weather or not the Endo they found when they operated has come back!

Percey profile image
Percey in reply to

Good luck with your tests, hope everything is ok ♥️

Oh,forgot to mention,forgive me I'm a newbie to this sight sorry.

After my operation I haven't taken any hrt at all! My love and hugs to you Percy and everyone else who is going through this. Xx♥️

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