What to expect please..: Today I saw the... - Endometriosis UK

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What to expect please..

MeganMae
MeganMae

Today I saw the specialist I asked to be referred to and she told me I have advanced endo, on the front and back lining of womb, bowel and bladder stuck together, both ovaries stuck to the back of womb and on another lining I can't remember.

I was just wondering what to expect for the surgery?

She said there will be another surgeon there Incase of damage to bladder/bowel, and it will be excision surgery.

Has anyone had this much done in one surgery?

What is the recovery like?

Where are the incisions made?

How was the pain 4 months after?

I have another appointment at the end of September for all this to be answered but I value your ladies experiences more! Many thanks in advance for any help xx hope you are all coping xx

11 Replies
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Hi I have just had the exact same thing, in June and I am still recovering to be honest I won't. Lie the first month after was painful for me, how they explained it to me is that on very rare occasions a section of bowel has to be removed altogether and stitched back together hence the need for a bowel surgeon. I looked about 9months pregnant and when. They opened me up they could not see my ovaries and was really stuck together all like you... But they managed to release everything to remove it all without cutting my bowel, my specialist has been fantastic! So when the initial pain and swelling subsided ( I am about 8 weeks on) the whole of my stomach area is still very very tender like the type of pain if you had done too many sit ups and I can't do any lifting or stretching because I feel it especially in the lower area where the cut is and I think my bowel is a bit irritable, which I am not surprised considering being man handled but I am getting there slowly and I have no regrets whatsoever and I have had not a drop of bleeding since the day after the surgery hurray :-)

I know it's nerve wracking but I feel like I can see the light at the end of a 20 year tunnel and I would do it all again tomorrow :-D

I hope that helps, only you know if you are ready and I was.... Good luck xxx

MeganMae
MeganMae in reply to Leigh2675

Thank you so much, and for your honesty! I hope you recover fully soon! Xx

Leigh2675
Leigh2675 in reply to MeganMae

Thank you :-) I am on the mend it was the best I have done, I hope things go well for you too xx

I had 5 hour surgery on stage 4 endo pretty much everywhere! It took a while to recover but I would say by 8 weeks I was totally back to normal. The 3 incisions were minimal and healed quickly. Just be aware that your first cycle after the operation will be pretty painful but after that mine were practically non-existent. Anyway I'm nearly a year on and have no returned endo at all! My operation totally changed my quality of life. Good luck xxx

MeganMae
MeganMae in reply to EllieD

Thank you! So glad to hear nothing has returned xx

It depends very much on the skill of your surgeon and their experience in dealing with endo. For the bowel and bladder involvement that you have you absolutely need to be operated on by an accredited endo surgeon who will have a colorectal surgeon and a urological surgeon on hand during your op should the need arise. She has mentioned their presence so I suspect you are with an endo specialist.

Presuming that you are with an endo specialist, at your next appointment ask how they intend to tackle the bowel endo. Some surgeons remove the affected section of the bowel and join the bowel together again but a temporary colostomy bag is required until the bowel heals. This is quite an aggressive approach and I don't believe it is necessary in all cases. The other method is to 'shave' the endo off the bowel. This is less invasive but could mean at any unseen endo is not removed. On balance, my preference is shaving.

If you are not with an endo specialist then a general gynae should not be attempting surgery in your case. While not all endo specialists are equal, you would be better off to do your research and make sure you find a good one even if it means travelling. Check here to see if your surgeon is accredited if you have not established this already bsge.org.uk/ec-BSGE-accredi...

Your situation sounds very complex and similar to mine with the exception of bladder involvement which I did not have. I had 2.5 hour keyhole surgery at the end of May.

I had a post op infection (like a bad 'flu) that completely floored me but once I got over that I was completely fine. 4 weeks after surgery I had plenty of energy, never tired, no pain apart from a sharp pain episode after walking too far too soon.

I can hardly see my incisions 2.5 months on. 2 small incisions either side of the lower abdomen just below the knicker line near the ovaries. 1 incision in the belly button. 1 incision just above the pelvic bone for a blood drain bag that was removed the day after surgery. I also had a catheter to collect my urine, IV drip, attached to automatic blood pressure monitor and those inflatable things on my legs to help maintain blood pressure. So don't be alarmed by the amount of paraphernalia hanging out of you.

Initial recovery is not pleasant when you come around from the op and for the first few days. It's a bit yuck but once you accept that and just go with it it becomes a bit easier. My first week went very well and I got better and better every day until the infection hit.

I had quite a bit of trouble getting my bowels moving after the op and this lasted a couple of weeks. I was given Movicol when I was in hospital but the results were...nuclear and I wouldn't go near it again. I eventually found Aloe Vera juice and that worked very well. Sorry to talk of bowels but this aspect can make recovery unpleasant and it's really important to get things working again. This will impact your overall recovery. Research online for natural ways of dealing with bowel issues. The medical solutions are poor.

What really helped me was finding a very good surgeon and utilising many of the strategies in this book 'Recover Quickly From Surgery' amazon.co.uk/Recover-Quickl... You don't need a kindle to read this, just download the free app.

Best of luck with your surgery. x

MeganMae
MeganMae in reply to Brownlow

Thank you very much! It makes me feel better to know what to expect, good and bad xx

Hi, in my case I was a little unfortunate in that the endo had spread to my bowel and during my surgery three years ago the surgeon had cut a hole in my bowel during surgery. I had a colostomy bag for little over a month and took about 3 - 4 months to heal. The recovery process was very painful for me and now 3 years on, I still have difficulty with my bowel and the endo has returned. My scars arent so pretty either.

I don't think my doctor was a specialist but then again he said I was the first mistake in 17 years (guess that's good for all the others!). Don't think this mistake will happen to you but just be aware that it there can and have been mistakes. It sounds like your doctors are taking a lot more precautions with your surgery so I'm sure you'll be ok. It won't be pleasant after but when you've healed you should feel better.

Good luck, hope it all goes well!

MeganMae
MeganMae in reply to MandyLouise

So sorry to hear of your troubles. I hope you find some relief soon xx

Hi

I have the same as you and I'm going on for surgery next Friday 28th August. Beene waiting 8 months for this, as need vowel surgeon there too!

Please feel free to message me in a few weeks and I can update you.

I'm nervous but really need this x good luck to you 😀

MeganMae
MeganMae in reply to Missy_22

Oh good luck! I shall definitely be in touch to see how you are, hope you recover well! Xx

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