Stage 4 Endo and Excision

[S-Joys]

Went to see our 'second opinion' consultant regarding my Stage 4 endo and laparoscopy last night. Was told I have deep infiltrating endo, sticking my ovaries to the back of my uterus and bowel. I have been recommended excision via laparoscopy but been told it will be too risky to remove it ALL due to depth of endo and complications of surgery. I currently don't have any / minimal endo pain (please don't hate me!) but my main issue is infertility so they want to use excision to free my ovaries with the hope of making IVF safer and hopefully more successful. Currently, they think they wouldn't be able to access the ovaries / eggs so excision is a priority. They said they don't want to mess too much with the bowel as there are risks which could mean I end up with a stoma and as I don't have pain currently, it is better to leave it until it is necessary. They also said if they cut too much into the uterus, there are risks of internal bleeding. They focussed on quality of life over trying to treat all the endometriosis.

My questions:

Has anyone else had partial excision and did they end up having more surgeries in the future?

If endo progresses over time, is it worth trying to treat it all at once? (esp as it is already severe, deep, stage 4?)

How else can endo be treated if not all excised?

I'm tempted to get another opinion and while my husband is very supportive, he feels I need to trust this second doctor and stop searching until I find a doctor who will tell me 'he has the magic wand and can remove it all'. So I'm just wondering if there is anyone out there who had deep endo / stage 4 and had successful surgery?

[Hidden]

I have had extensive excision for the sort of endo you are describing. I also had kissing ovaries that were stuck to the back of my uterus, endo on the bowel, rectovaginal endo, adenomyosis, endo round the left ureter, endometriomas, and a hydrosalpinx in the right tube. I had this carried out together with a total hysterectomy and BSO (removal of ovaries and tubes) but I was in a very different position to you in that I already have children and didn't want any more. When my consultant talked me through my options he said that if I did want more children they would carry out a more conservative surgery similar to the one you are describing with the aim of helping me get pregnant rather than being a long term treatment for the endo. They would do the least amount of work needed to help me get pregnant so that they could minimise scarring and therefore leave me able to have the more extensive surgery at a later date.

It is very likely that you will need more surgeries with a partial excision. There is sadly no magic wand and there's no alternative treatment that can fix it - it's all about pain management and improving fertility. The best thing to do is make sure you are being seen by a specialist, preferably at a centre from this list bsge.org.uk/centre/

I am happy to tell you who treated me but I will have to message as we aren't allowed to openly discuss consultants on here.

Hope this helps. x.

[S-Joys in reply to Hidden]

Thank you for taking the time to reply. I live in Belfast so this second consultant I've seen is the best Northern Ireland have and was very blunt and honest about what I was facing which I appreciated. I think I just needed someone to reassure me as I'm likely to have to pay privately as his current NHS waitlist is 14 months and then a further 9 months for ivf and been told it's aggressive so the sooner I have treatment, the better.

Can I ask how you are after all your treatment? Do you class your surgery as a success?

Thank you for your comments.

[Hidden in reply to S-Joys]

I had the surgery just under 12 weeks ago and so far I'm doing really well. The first month after the surgery was very hard (I had problems with bleeding and ended up back in hospital) but after 5/6 weeks I began to see the light at the end of the tunnel. I now haven't needed pain relief in nearly 2 months, my bowel symptoms are slowly improving. I've got more energy and I'm more active and I don't look grey and ill any more, but I'm now having to deal with premature menopause, as I am only 39. However I don't regret my decision.

[RLJarman in reply to Hidden]

Hi can you please message me your consultant pleaaw. I am in a very similar situation. Lost faith in my consultant. After last Lap. Thank you x

[S-Joys in reply to RLJarman]

Sent you a wee message last night, hope you got it. Good luck with your future treatment x

[MaryLou11 in reply to RLJarman]

Please could you also message me your consultant? thank you

[RLJarman]

Yes thank you ,sorry I have been busy. I'm in South East England. I have a recommendation and have had my first appointment. Will see how things progress. Any advise and info is so important. I am going through the NHS but needed a private first appt. Good luck going forward.

[S-Joys in reply to RLJarman]

Have you found the group Nancys Nook discussion and education on Facebook? Lots of information, research articles and a list of recommended doctors. I've found it a useful tool. They even have a list of questions to ask your surgeon which I found super helpful. X

[RLJarman]

Thanks yes I'm on Nancy Nook. 😁