living with endo

[Willowmum]

Hi all - first time poster

I have stage 4 endometriosis with adhesions to bowel and fibroids. I am due a hysterectomy but have been told by consultant that 20% chance it won’t help with the pain, that the endometriosis on bowel will likely remain and there are other risks generally with the surgery.

I am curious as to what the risks would be of carrying on using pain management and simply living with the endometriosis as opposed to having the hysterectomy.

All and any help / advice / experiences much appreciated x

[PaintToughTed]

It’s really difficult to know, most endo surgery is to manage symptoms (I.e. relieve pain, stop it spreading). So it’s often upto the patient to assess whether they would rather live with the symptoms.

That said I just had surgery as my endo was slowly restricting my small bowels so they had otherwise it would have eventually led to a blockage and risk to life. So it really depends on what your consultant found and what they’ve shared with you.

As it’s involving your bowel, it is worth checking are you being seen at a BSGE centre? Has a bowel surgeon agreed that the endo on your bowel should be left? Big decisions and hope it all goes okay for you! x

[Willowmum in reply to PaintToughTed]

Thank you! They have found endo it is tethered to the bowel & do have from an old MRI scan there is a 3cm adhesion. They will remove as much as possible but may need to leave some there as to not damage the bowel. Have explained obviously risk of damage to surrounding organs, of needing a stoma bag if bowel damaged, prolapse, hernia etc. The pain over the last few months has reduced though & not been as intense. They offered me a hysterectomy because of my symptoms & my mum had terminal ovarian cancer too. This seemed a sensible option under the circumstances but with all the risks involved & only 80 % success rate is has left me wondering what would be the consequences of leaving it. Is the endo likely to turn cancerous in the future?

It’s difficult to get that information many articles are conflicting.

Of course in your case with it causing restrictions to your small bowel can understand why it definitely needed doing, thanks for sharing your experiences x

[Endolemon]

I have similar diagnosis and waiting for joint app with my consultant and colorectal surgeon.

I am very suffering with bowel problems and pain and bleeding, so I decided to have a hysterectomy. Though it is scary.

Also I read that 10% of Endo cases turn into cancer if leave it like this.

[Willowmum in reply to Endolemon]

Sorry to hear your suffering so badly. It’s difficult to get the correct information we need & is good to hear of other people’s experiences.

Yeah my colorectal surgeon would be present during my hysterectomy if I go ahead too.

That was my biggest concern, if it was left would it put me at higher risk of it becoming cancerous later.

Have also heard about frozen pelvis where all organs become stuck together due to the growth of endo & would make it much more difficult procedure to correct later.

Hope everything goes well for you x

[ciaotuffy]

Hi Willowmum,

Sorry to hear about all your pain. I've had 2 laparoscopies and the 2nd time had a full hysterectomy + ovaries removed. I was 49 at that time. It's been almost 2 years and I've been really good. After the first surgery, they removed 1 ovary, tubes, removed endo, the endo grew back. I ended up with a 5mm cyst that grew back on the other ovary within 5 months of my first surgery. Given my age and that menopause would be coming soon anyway, I decided on the full hysterectomy and ovary removal. I had a very good surgeon who was able to remove what he could. He said it was like a bomb exploded inside me, the endo was everywhere. The recovery was hard, but I'm glad I went through it to at least be pain free for now. I didn't have bowel involvement that needed colorectal. If you get the hysterectomy, you should have ovaries removed otherwise endo will likely grow back w the hormones cycling.

I know it's a very hard decision to make and there are no guarantees. I'm so thankful that I'm doing well so far. Feel free to message if you have any questions. Best of luck to you.

[Willowmum in reply to ciaotuffy]

So pleased to hear you are pain free at the moment after all you have been through, hoping that will continue for you.

Yes will definitely get my ovaries removed if I do go ahead with hysterectomy, my Mum had terminal ovarian cancer so would be good to get rid of that risk factor. It’s just working out do all the benefits outweigh the risks of surgery & possible failure to be pain free afterwards.

You would imagine if you have ovaries removed the endo wouldn’t grow back again but have read it still can do in some cases.

Would be good to get drs advise of what they think would be best for you & then take decision to follow or not. Don’t know if it’s the same for everyone but in my experience you are given options, without medical opinions & asked to choose yourself . I understand they don’t want the responsibility incase anything goes wrong. It can be daunting though when not medically trained to make such life changing decisions. When you research yourself it’s difficult with so much conflicting information.

Thanks very much for sharing your experience & offering to answer further questions.

It’s much appreciated x

[CCWildSwimmer]

hi! I am 6 weeks post hysterectomy and excision of Endometriosis from my pelvis and bowel. I kept my ovaries as otherwise would have needed HRT, however this does mean that there is more risk of pain and endometriosis reoccurring… it is likely that I will need further surgery in any case as my recto vagininal endometriosis is deep infiltrating and I think it is possible that I have endometriosis elsewhere…. It sounds like you are doing the right thing for your body, but it can be hard to come to that decision as lots of medical professionals will have different opinions. All the best for your surgery when it happens x

[Willowmum in reply to CCWildSwimmer]

Thank you for sharing your experience. Wishing you all the very best with your recovery and hope you remain pain free for as long as possible.

It’s is a tricky one. Im thinking ultimately I will have the hysterectomy & endo removed.

I just want to explore all options & make sure my final decision is the right one. Like you say can prove a difficult choice when opinions are very conflicting x