If pain has stopped due to pill, is surgery still necessary?

[gettingusedtoendo]

Hi, would really appreciate some advice

I’m on a waiting list for lap with excision as an MRI showed I have a large adhesion b/w uterus and bowel. The consultant also thinks I have adenomyosis due to cystic areas in uterus, and they’re doing a dye test on my fallopian tubes.

The thing is… since my consultation, my pain has diminished to nothing, completely due yo going on the progesterone-only pill. I was in such agony before every month during ovulation, but now no period and no pain . Sometimes I feel like I imagined it all and almost feel a fraud when I see what pain others were in.

Anyway I was all for the surgery , mainly because I’m worried about my fertility, but also because I don’t know what happens if you leave adhesions alone, and also I’ve been waiting so long for surgery after being in so much pain. I also want to have my endo/adeno officially recorded in case my pain is bad again.

But my mum has worried me saying it’s risky to have surgery on bowel if not totally necessary. And honestly, I don’t know, is it? I don’t want to talk my consultant out of it if my adhesion is large and most of all I want to know what my fertility looks like. Sadly, in that regard adenomyosis worries me more than endo and there’s not a lot they can do there.

Sorry this has turned into a long one.

Has anyone experienced the same? Thank you.

[Lofty1589]

I’ve not experienced the same but whilst your pain is down, the pill only masks the issue - it doesn’t diminish or stop Endo. You may find if you don’t go ahead with this surgery, things may get worse for you. I would say it’s better to go ahead with surgery if it means preventing a possible bigger problem later on.

[gettingusedtoendo in reply to Lofty1589]

Thanks, I did wonder about this but the info I’ve received has been so patchy. Appreciate your advice

[Lindle]

Are you being treated in a specialist endo centre?

[gettingusedtoendo in reply to Lindle]

Hi Lindle, yes it’s BSGE-accredited

[Lindle in reply to gettingusedtoendo]

It is so important that you consider this very carefully (which I know goes without saying) but one of the biggest dilemmas that faces someone with severe endo is that of one whose symptoms are manageable. The two indications for surgery are to treat pain and/or infertility. When it comes to pain then the majority of women will be in significant pain with deep fibrotic endo and so the decision is essentially made for them based on the hope of having an improvement in their symptoms. Also those who have been trying to conceive for quite a while are likely to be swayed by the documented improvement in chances that surgery usually gives for severe endo. But as you say the adeno may well play into that too.

Deep endo doesn't always progress further and can reach a final stage and there can be a case for monitoring in that case. If the progesterone has stopped your periods and with it your pain then it may be that adeno is the culprit. From an ethical point of view then there isn't a case for such complex surgery for someone who is not in pain and there are occasions when severe endo is found incidentally in which case monitoring of symptoms would be appropriate. A caveat to that would be if the MRI showed infiltration into the bowel or other organs/structures that could put them at risk. But if there is no such potential damage then it is a tricky one.

It is a very personalised situation and I should discuss all the pros and cons with your surgical team until you get a feel for what is right and be wary of being advised on here to have surgery as it is a very big decision for you.

[gettingusedtoendo in reply to Lindle]

Thanks so much for this comprehensive reply. It’s given me a lot to think about

[EmaW]

I completely understand where you’re coming from. I have stage 4 endo diagnosed 2018. A large cyst on my ovary since 2019. And have just been told it is affecting my kidneys which is now being investigated. I take the combined pill continuously so I am mostly painfree which I am so grateful for but as much as the thought of more surgery scares the hell out of me, esp. the bowel part, I just feel like the endo is only getting worse for me and working it’s way deeper. I don’t want to give it the chance to get so bad that the damage to other organs is irreversible so I feel the surgery is worth it to me in my circumstances. I am waiting for an MRI next week before finalising treatment options.

It’s such a difficult decision and as with anything there are risks. Definitely discuss your worries with the consultant team and all the options available to you as certain things like fertility worries etc. will all play a part in what’s best for you

[bex79]

I have endo on my bowel and everywhere and I haven't had the op as the risk is too great for me, my biggest fear is damage to my bowel. I am managing pain with the pill. The op doesn't always get rid of it and it can come back and also the more ops the more scar tissue, lots to weigh up, good luck.