I am quite scared of waking up with a stoma and hopefully won't be permanent as they have warned I may need one. It could only be for 3 months. I have 2 large nodules on bowel one is 5cm.
Trying not to lose the plot as I also want to have a baby through ivf and I'm nearly 39. How long do I wait to try IVF after recovery?
Any advice appreciated x
Hi, I was in a similar position to you in the summer with my first lap. In the end, my surgeon decided the best thing was to remove as much as possible but to leave some endo on the bowel until a later date to avoid the risk of a stoma. However I think this decision was made due to the fact I don't have pain symptoms and fertility & cysts were my biggest issue. He said while it would be necessary usually to remove it all, he had to weigh up my quality of life and thought it was best to preserve it. I'm still not 100% sure if this was the best route but 7 weeks later, I feel better, still no pain and will be starting ivf next month. He did say ivf asap after op, I assume once you are fully recovered though. Good luck and as you said, a stoma might be a temporary measure to a better quality of life X
Thank you so much for your advice do you mind telling how big your nodule was on your bowel? I don't know if the size makes any difference.
I'll be honest, I can't remember other than a large nodule, I'd need to check my medical notes. I think mentally I was focussed on the three cysts I had on my ovaries. I had an endo specialist and a bowel specialist team up for my op so I know some was shaved off my bowel. I think it depends on the position also. Mine is in the pouch of Douglas (I think that's what it is called) and close to my rectum so made it tricky. They also said it was behind the top of my vagina so to remove it would shorten my vagina. As I don't have painful sex, they left it as said I would definitely find it difficult if they had shortened it. I feel your nerves, it's terrifying to think of everything it affects. X
You've been very helpful thank you. With IVF in the mix there's delicate decisions to be made. I'm seeing my gynaecologist at end of the month so will discuss it with him. Like you say weighing up quality of life plus chances of fertility. I'm at a bsge centre so feel a bit reassured by that. X
I had surgery for bowel endo back in march - I had a 3cm rectovaginal nodule plus more bowel endo elsewhere. They warned me about the possibility of a bowel resection but in the end were able to shave it off (though the first thing I did when I came round from the anaesthetic was feel under the sheet for a colostomy bag).
The actual stats for bowel resections for endo at bsge centres show it is pretty rare. This is data for 2015 but it gives you some idea.
Thank you so much - I may opt for the shave off too but want to make sure it hasn't penetrated the wall of the bowel first. How long did it take you to recover from your surgery?
I didn't opt for them to shave it off - they said they wouldn't know until they did the surgery whether a resection would be needed or not.
Recovery is still ongoing as it has only been 7 months and I had a hysterectomy with removal of tubes, ovaries and cervix, and extensive excision. I had endo on my bladder and ureter as well so it was a massive surgery. In terms of the initial healing, the first month was the worst and I slept for most of it. Was functioning fairly normally and driving by about 8 weeks I think.
Omg this is exactly what I’ve just had 12 days ago, was literally just saying all I do is sleep! Glad to know this is normal as I was beginning to worry. I’m bleeding as well which I’ve been told can happen also? The recovery is taking it out of me almost as much as the pain before surgery 🤦🏻♀️ Glad to hear there is light at the end of the tunnel x
Good luck, and hopefully they can find the least invasive way to operate for you. However, I just wanted to say that if you do wake up with a stoma it will all be ok. I had emergency surgery about 10 years ago and ended up with a stoma. My situation was different to yours in that myendo had been missed over the years and sadly it resulted in my bowel being completely strangled and killed by the disease. I had to have emergency surgery to remove the dead bowel and parts of my rectum. A stoma was the only option for me at the time. It was temporary. It was s learning curve. But it saved my life and once I was use to it I actually considered keeping it permanently because I was symptom free from the Endo for the first time in years! With a sense of humour and a bit of organisation it will be absolutely fine if you do end up with one for a while. The thought of them is worse than the reality! Best of luck x
Thank you so much I feel better and reassured. If I do have it it's temporary and better than pain. X
Hi. I'm currently waiting on a full hysterectomy and been told I need a bowel resection too at same time, they will give me a temporary stoma to give me time to recover, see bowel consultant on 4th Jan then wait for a date. Really svared by stoma idea and recovery time tbh. I have a physical job, so not sure when I'll be able to return to work. Any advice appreciated. X
I actually didn’t have the bowel op in the end as my consultant said it was too risky at the time for fertility so suggested I go straight to IVF. Since then I’ve had a little boy and now pregnant with second. I’ve managed to dodge the op as my pain is manageable. I may need it in the future if things get really bad. But in between pregnancies I managed some how with diet and exercise. They said my stoma would be temp for 3 mths so that reassured me at bit but definitely a lot to get your head around. I hope you don’t actually need the resection when they do the op. Good luck with it all x
Stomas are very rare. Not impossible but very rare. Even with a resection a storma is not always necessary. Its about 5%. My father had a strangulated bowel, his bowel had died and was gangreen, no choice but to resect it and even he didnt have a storma! So dont worry yourself. You want to plan IVF asap after surgery. Endo can come straight back. Mine did! Xx
Thank you so much for your comments they are reassuring. I'm planning on iVF straight away after we're going private so there shouldn't be a delay. I hope your endo isn't as bad as it was before xx
Mine so far has been unresponsive to any treatment. Thats why i say dont wait around for IVF. I was offered IVF at my first follow-up after surgery as a line of treatment. So i know you can go straight for IVF. If things get in way of IVF and it has to be put off for sometime, then treat with medical therapy straight away. Best of luck with your endo and IVF. Xx
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