Bowel endometriosis, 11 years post total hysterectomy

[Shellbell-]

Hello everyone, hoping to reach out. I had a total hysterectomy 11 years ago conserving my ovaries. Unfortunately my most recent mri has shown DIE present in my bowel. I am waiting to be discussed at a multi disciplinary team meeting for surgery, which looks to probably be a bowel resection & removal of endometriosis. I’m struggling so much physically and mentally at the moment. My referral was made by my GP to a BSGE centre 20 months ago. Has anyone had similar post hysterectomy? And can anyone offer any hope that things may improve, or willing to share their story please? 

[Mizunderstood]

Did you know you had endo before your hysterectomy? I had a hysterectomy 7yrs ago leaving one ovary and neck of cervix behind. Although l was told l had pcos many years before, endometriosis was NEVER even suggested. Today l am undiagnosed but waiting to see gynae and l am 99% sure l have it, also looking back through medrecs l see it briefly mentioned YEARS ago.

Sadly in my case l am convinced the endo was always known about and tissue was left behind to see the course the disease would take. I wish you good luck.

[Shellbell- in reply to Mizunderstood]

Thanks for your message. My hysterectomy was for Adenomyosis but I don’t believe there was any mention of endo? I’ve spent years going back and forth knowing something wasn’t right but because it wasn’t in the gynae area I felt like it kept being missed ☹️. Thankfully my GP referred me to a specialist centre and they identified it straight away (& the severity of it)

I hope you’re not waiting too long to be seen by a gynea and get the answers you need.

[BellDev]

I too had a hysterectomy 11 years ago but also had my ovaries and cervix removed. At the time the surgeon said she left the endometriosis, especially seen on the inside of my back. I’m having tremendous bowel problems this last year and see a surgeon next week, I do hope they can help me. Hugs to you x

[Shellbell- in reply to BellDev]

it’s awful isn’t it. I thought all that time ago things would be so much better after my hysterectomy and sadly that’s not been the case. I hope your appointment goes well. My bowel symptoms started about 4 years ago, it’s debilitating. Hugs to you, I hope they identify what’s causing your bowel problems x

[BellDev]

They diagnosed a cecal volvulus which is twisting and untwisting but sent me away without listening to my symptoms advising me to return as an emergency with full bowel obstruction. Since my periods began I’ve had continuous bowel problems but this last year I can only eat liquids without 10/10 pain.

I truly empathise xx

[Shellbell- in reply to BellDev]

so sorry to hear how much it’s effecting you ❤️‍🩹 That must be so painful for you.

My bowel is stuck to things and has shown to have deep infiltrating endo. I’m getting no good days or relief from it anymore, but I’m thankful it’s finally been identified, that’s always half the battle!

Just drop me a message if you ever need to talk, I understand how hard it can be xx

[BellDev]

Thank you, I’m bleeding every month too despite having no lady’s parts. Exhausted. They haven’t looked into endo post hysterectomy but I’m convinced it must be. See what they say on Wednesday. Love to everyone going through this.

[Shellbell- in reply to BellDev]

It does sound endo related, with the bleeding and possible bowel adhesions. It’s hard not having a cycle anymore to follow to know where you are with things. I hope it all goes well on Wednesday x

[BellDev]

Great thanks and hugs to you x