Endo surgery now or wait? Any advice plea... - Endometriosis UK

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Endo surgery now or wait? Any advice please!

SR88 profile image
SR88
8 Replies

Hello everyone, wondering if anyone can help! I have been diagnosed with severe endo this year, I have a cyst on my ovary and the doctors have said my organs all around my uterus are stuck together. I also have blood in my stool so I know my bowels are involved.

The surgeon said he will do the laparoscopic surgery with a colorectal surgeon there too. He has also said he can cut out my focal Adenomyosis at the same time. (I am currently living abroad so this is private treatment with insurance).

Anyway, I am 30 years old and although I am married and in a loving relationship neither of us feel ready for a child yet! The surgeon has said don't delay in getting the surgery done and as soon as it's done then we should start trying for a baby! I feel like I'm being forced into having a child straight away.

Do you think it would be best to delay the surgery so we have more time to think about a baby (if it's even possible), or do you think I should go for the surgery now and just hope that by the time we are ready for m a baby the endo hasn't grown back already?

Any advice people have would be amazing. It is really hard being abroad as different cultures have different views out here.

Thanks in advance xxx

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SR88
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applebird profile image
applebird

If there is bowel involvement it's best to get it done asap to give you the best possible chance at avoiding resection/colostomy etc - get it done pronto.

Severe endo with bowel involvement and major multidisciplinary surgery isn't to be messed with.

I was in the exact same situation. Had my forth lap (major) involved partial resection, colorectal alongside. The endo came back quite quickly despite this - at 29 I was told another major required, same set up but a third specialist would be needed for removal of focal adenomyoma... put on list for surgery and told to try for a baby as risk of hysterectomy high.

When I was diagnosed at 25 and told not leave getting pregnant beyond 30 - I wasn't ready, when things got more complicated over 4 years (and four surgeries) after this I wasn't ready and even when we were married, had house and were told last chance saloon, felt the same; frightened about the health stuff and under pressure. Nobody I know has ever been 'ready' there is literally no baby book, amount of money, life experience that will ever make you ready for parenthood, you learn it all as you go. We now have a two year old and there are a lot of times I'm still like, god I would love to be going on fancy holidays or having lie ins rather than scooping poo out of the bath.

However, and I don't want to sound contrived, my son is the most treasured person in my life, I adore him and imagining risking my life without him in it put things into focus - we got ready, we're very happy, he's amazing, I wouldn't change it.

Even if you went for surgery tomorrow, recovery for that type of surgery would be about 6months before trying to get pregnant, you would be best to go on prostap or pill back to back to prevent regrowth during recovery. Then if you got pregnant straight away it's another 9 months by which point you are 32/33yrs old minimum (you might have to wait a few months even privately to have a multidisciplinary organised, and it could take you a while to get pregnant/you might need fertility treatment even with having surgery which could take years).

Those were the sorts of things we were thinking about when making the decision. Ultimately it's up to you guys to weigh up what is most important to you long term, regardless having the surgery is really important for your own health and well being. x

ps make sure you have excision surgery with an endo specialist

HellyLlewelly profile image
HellyLlewelly in reply toapplebird

Brilliant reply..everything you said I would have said too.

We just got the 1 little boy, my womb was too spent afterwards and miscarriage rate was too high. I have had to have a hysterectomy my surgeon specialist believed my symptoms were adenomyosis but it turns out I was riddled with endometriosis too which didnt show up on MRI and my bowel was the most affected. Its still affected 9 months post Hysterectomy. Its probably still feeling the effects of the bowel shave.

Coming from the most unmaternal unaffected by children pre Mother, now Im a Mum my whole life revolves around our son who is just the completion of our love.

We take him everywhere with us and he loves plane journeys!

He is my lifes highlight.

This is coming from someone not interested in animals nor children yet Im 100% comverted post baby.

Im not getting a dog though 😉.

Good luck.

These conditions are a biaaaatch.

Helly.

SR88 profile image
SR88 in reply toHellyLlewelly

Thank you Helly! Everyone is so helpful here and it is nice to be able to relate. I have never had big urges to be a mother when all of my friends have always been broody, but I love kids and I am teacher so I am worried I'll have regrets later down the line if we don't try now. However, I would love a dog! Haha.

I am also sorry to hear you are still feeling the pain of endo 9 months after your hysterectomy! Hoping it all sorts itself out for you eventually xxx

SR88 profile image
SR88 in reply toapplebird

Thank you so much for such an in detail response and sharing your experience with me! You guys are amazing on this forum. Everything you said makes complete sense! Some big discussions need to take place with me and the hubby now. So happy you were able to have your son ❤️ xxx

applebird profile image
applebird in reply toSR88

Wishing you so much luck with everything, if you ever need a chat ladies on here are lovely, no matter what happens everything has a way of working out xx

E-ZEE profile image
E-ZEE

Well it is totally depend on you and your symtoms ,if you think you can survive with your symtoms so you can try other options instead of operation like depo and porstap injections and here you are not clear you are not ready for baby now or you dont want baby at all?I mean at stage 4 endo it is already have a less chances to concieve so if you delay more you minimse your chances more even after 35 of age your ivf succession chances are decrease aswell.So it is your decision if you really dont want baby at all so its ok to delay operation or try injections or if you want baby in future so my personal advice is don't delay becoz time is running fast.Hope you take the best decision for you.

SR88 profile image
SR88 in reply toE-ZEE

Thank you for the advice! I think me and the husband have decided to try after the surgery and what will be will be. X

HellyLlewelly profile image
HellyLlewelly in reply toSR88

😄😄😄🤗🤗🤗

GOOD LUCK

XX

Helly x

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