Endometriosis UK
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Surgery looming..... please help!

Hi all I am pretty new to all this but have endo surgery looming and am going crazy over it. I am being operated on in a Bsge centre which in grateful for and everything has moved fairly quickly, which again am grateful for but haven't really has time to think. I have been told I have a large endometriona on one ovary and a smaller one the other side. I also have a large RV nodule and kissing ovaries. This has all come about due to not being able to conceive in the last 2 years and irregular bleeding. I have had an MRI Ultrasound and internal examination and ultrasound to be diagnosed.

The plan in the surgery is to removed the endometrionas and cut away as much of the endometriosis whilst trying to preserve my ovaries and tubes. They are also planning on shaving the RV nodule on my bowel.

There is an added complication that I cannot have any form of hormones.

I am thankful that i don't have much pain associated with quite advanced endo and realise I need the surgery to help control it and to hopefully convieve but am sooooooooo worried about after the op. I've tried to research and understand it all but am reading alot of negative outcomes.. people in more pain and having bowel issues.

PLEASE does anyone have any advice or experience of any of this as I really don't want to make myself worst!

Thanks for reading and replying in advance x

19 Replies
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When is your ok? I'm due to have the same on Wed 8th November.

I've had 2 ops previous and still bloody nervous about pain after.

Think in reality it's all about the long-term and gaining a better quality of life.

That's what I'm hoping for.

Xxxx

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Thanks for taking the time to reply. Mine is end of the week! The prob is I am not really suffering now (thankfully) so worried about activating it. I have had surgery before but not endo related. I'm really having this done for the long term like u say as they told me it will get worst and the hope to have a baby. Good luck xx

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Hi there!

First of all, try your best not to worry and read about too many (negative) experiences if you can help it - I know it's easier said than done though, and trust me I was guilty of the same!

My experience was actually a LOAD better than what I was expecting and what I'd read beforehand. For example, a lot of the accounts had been talking about the shoulder pain from the gas they use, but I can honestly say I didn't experience that at all!

The pain thing is to just make sure you allow yourself lots of rest afterwards; listen to your body and don't over-exert yourself. I made the mistake of heading out to my parents' house on Day 3 because I felt fine, only to be in loads of pain a few hours later from sitting in the car and walking around too much. Rest, rest and more rest and the healing pain will be gone before you know it :)

I'm in a very similar situation about the hormones. Ever since I was a teenager, taking hormones as contraception presented me with so many issues, and I stopped taking the pill at about age 18, despite being in a long term relationship, because they made my life so miserable (awful migraines, moods etc). After my lap, I gave the pill one last go (back to back) which was fine for about 4 months, but then I started to experience symptoms which gave me early menopause-like symptoms (words of the specialist I saw about it), which they had to do tests on just to confirm that it wasn't, and that it was just down to the pill! They also advised me against having any further hormonal treatment for endo.

Unfortunately I'm having an ultrasound tomorrow for suspected cysts and/or returning endo; the potential downside of not being able to control it via hormones. However, for me, the prospect of having an op again actually makes me far happier than the thought of hormones, so every cloud!

I wish you all the luck with your op, you'll be totally fine x

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Thanks so much for replying. I'm glad you have a more positive story :)

I am more worried about the bowel shaving and poss damage to my ovaries/tubes. Did you have the bowel shave done ? If so can you eat normally and have a normal bowel function since ?

I'm sorry to hear that you think you may need more surgery... how long has it been since the last one (like how long did it stay at bay without hormones)

We are hoping to have a baby after the surgery if things arent damaged and am told pregnancy helps keep it at bay for a while too.

Thanks again for taking the time to reply and hope you don't mind me asking you these further questions. Xx

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You're very welcome! I got tons of advice on here before my lap, so it's always good to feel you're helping someone else, even if it's just a little bit.

I didn't have a bowel shave as my endo was all in my pelvis, so I'm sorry I can't be of more help here :( hopefully they will give you plenty of guidance and advice about eating etc after that though. And with your ovaries and/or tubes, I'm sure they will also consider everything in respect for you trying for a baby, so try not to stress too much, though I totally understand the worry about these precious organs. I'm not too fussed about my pelvis but I sure am fussed about my ovaries and tubes!

I had my lap in May last year, so it's been about 1.5 years. Everyone is different though - my surgeon said some of his patients can be symptom-free for 4 years or more. And yes I've heard pregnancy can keep it at bay too, especially if you breastfeed when the baby is born. This happened to my friend, she had 3 laps and tried for a baby after the 3rd one, got pregnant really quickly and breastfed for a year, and she's still doing well and her baby is now two :)

Wishing you all the very best again! xx

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Hi I'm also planning to go for an op soon to improve my endometriosis before trying IVF and i'm also worried about having more pain after than I do now as I have been lucky till now not to have bad pain - the odd paracetamol here and there. How old are you? I'm 39 next month so time is not on my side :( I saw my consultant today and he said the recovery is 4 weeks as I'm having my fallopian tubes taken out endometriomas on cyst drained and mild endo removed. The articles I've read is that pregnancy rates are higher after surgery so you should be in a better situation to achieve that. Take care, Emma xx

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Thanks Emma .. like you we are lucky the pain isn't too bad so that's what makes me worry I could make it worst by having it done and agrivating it!

As I can't have hormones I wouldn't be able to have IVF so they have promised to do their best to preserve everything.. it will be one of my first question from waking up I'm sure!

Im worried about my bowel involvement too. I'm 37 and lucky to have a 6 year old. I had no idea I had this .. so for me to find out I even had endo let alone how far spread it was has all come as a shock and only come about as I have had bad period pains and not been able to conceive a 2nd baby.

Hooe everything goes well for you and if u have any questions about the surgery message me next week when hopefully it will all be done for me!

Xx

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My friend had excision of endo, a bowel shave, caether for a week. Then flew Germany 10 days later see her mum.

Did IVF a few months later an got pregnant with her son whose now 8 months old.

This is just part of your journey.

An I always think if she can do it so can I!

Add me as a follower then we can compare surgery pain afterwards lol

Xxxx

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Thank u xx

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I just had a thought how large is your RV nodule? Mine is 5cm and if you don't have any pain do you need surgery for that just yet? Could you do it after you have had a 2nd pregnancy perhaps? I will keep in touch with you to see how you got on but I'm sure you will be fine. May be we have high pain thresholds! xx

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Yes maybe we do ;) they are going to try and shave the RV nodule but not be too invasive as it's not causing me problems... but I worry it will continue to spread and may end up being worst left!

I have kissing ovaries??? And a 9cm endometriona on one ovary and a smaller one on the other! Xx

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I think i have the same worries as you regarding the RV nodule I don't know whether to do anything or not with it! Good luck with it all xx

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My consultant said to have regular scans then you can work out whether its getting worse and treat it earlier rather than later. Regular scans should be routinely offered to us endo ladies. xx

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Like an MRI ? Does that show up do u know ?

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I have had a more extensive surgery than you will be having but this including shaving a RV nodule off my bowel (my nodule was 3cm +). I had this done back in March. I was eating normally within 24 hours of the surgery and my bowel problems are no worse than they were before. It was hoped that the surgery would improve my chronic constipation (the nodule was pressing into the bowel and squashing it) and I've had some improvement but not as much I had hoped and I am still having to use laxatives quite often. However I am currently pain free which is the most important thing.

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Thank you for replying... Sorry to hear you have been through worst :(

Any tips for recovery do let me know. How long did it take for you to feel back to normal? Xx

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I had a hysterectomy with removal of tubes and ovaries and I had quite extensive excision as it was also on my bladder, ureter and pelvic sidewall so your recovery would be different to mine but excision is major surgery so you need to think in terms of months rather than weeks for recovery. x.

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Hey! Good luck for your op. Try not to worry too much! I think recovery differs person to person. I had a cyst on each ovary (found due to TTC), I bleed between periods but I had zero pain (except on occasion when I need the toilet), the surgeon removed one cyst and found a few patches of endo and untwisted/unstuck my ovary, it’s now been 2 weeks yesterday and I’ve recovered wonderfully, I’m so fine that I’m going to start some gentle exercise and the surgery hasn’t triggered any pain. The first 2 days are uncomfortable. Just listen to your body and let it rest. After that I saw a huge improvement every day. The doctor said I might want to eat lightly for a few days but unfortunately, I’m not one of these people who lose their appetite ever, the day I went home, I smashed a lasagne for 2. I didn’t poop for 4/5 days, it was uncomfortable but now all toilet habits are fine. My surgery was maybe minor in comparison to some but the body will find it’s way to recover, however long that takes... you’ve totally got this, just do what you can, when you can and don’t panic (too much) about it! X

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Thank you so much... it's good to hear some more positive stories. I'm a worrier in general so probably worrying about stuff some people don't even think about 🙈

I hope everything works out for you. Thanks again for replying xx

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