Positive Laparoscopy Stories?

[G_A_A]

Hi everyone😊 I was diagnosed with Endo early last year (even though I’m certain I’ve had it for about 9 years). Basically they found an ovarian cyst on one of my ovaries last year, confirmed via MRI that it was an endometrioma and I was placed on the waiting list for surgery. After waiting around for over a year now, I went in for another scan as blood tests showed that I had very high CA125 levels (the normal range is 0-34, I came out with a smashing 100!🙄). I was referred for a scan which has now shown that I have a second endometrioma on my other ovary (yay!). My GP said she’ll write to my hospital and ask them to put me further up on the list to have the lap done sooner rather than later.

I’ve read a lot of lap stories and for the most part what I’ve read hasn’t turned out great in various ways. My two biggest fears are early reoccurrence and needing a stoma bag post surgery.

I say all of this to ask are there any positive post-lap stories that anyone can share to give a bit of hope?

❤️

[PBGV24]

Hello! Don’t mind me asking why you have concerns of getting a stoma? That is very very very unlikely. Having a colostomy formed is massive surgery. And if the problem is on your ovaries not your bowel I think it’s something you shouldn’t worry about.

[G_A_A in reply to PBGV24]

Thank you so much for responding and your reassurance! I think it’s just from seeing stories of other women who have gone in for surgery and endo has been discovered on the bowel, it’s been removed and led to needing a stoma for a while to recover. But hopefully that won’t be the case.

[Gardenist]

I've had 4 over 20 years and they have all been skillfully done. Recovery has varied due to what was done each time but full physical recovery each time. They have given me many pain free years each time. I'd love to say it doesn't reoccur but it really depends on the individual. Mine was/is widespread and persistent. Everything reproduction related is out now so fingers crossed this time!

[G_A_A in reply to Gardenist]

Thank you for responding! That’s great to hear that it gave you pain free years. Is there anything else that you did in addition to the surgery that you believe may have helped too? E.g the pill, diet/lifestyle change etc

Also I hope you don’t mind me asking, but did you do it privately or NHS? I’m only asking because I’ve seen different experiences people have had when receiving treatment from either one, but if you prefer not to say that’s fine 😊

[Gardenist]

Hello Yes I have made a lot of lifestyle changes over the years. I eat an anti inflammatory diet. Especially no alcohol or processed sugar/carbs. I eat a lot of protein and veg. I've done sleep training as I suffered a lot of fatigue. I plan my life to a slower speed so that I have a chance to rest and de-stress. I had a 21 day cycle of which 1 week I would only be able to do the basics like feed my kids and struggle through work so I worked with that insted of against it and went to bed at toddler time! Not ideal but it kept me on top of dealing with pain as I was at least rested.

I was on the pill after my first 2 ops when I was trying to preserve my fertility. I took it continuously. I was not in pain until I came off it to try and conceive, which took a couple of years. After I finished feeding my second child I had the progestogen coil. I bled every day for a year but stopped being in pain. I didn't get on with the hormone part though. I felt very bleak. Overall the best thing for me though has been surgery. I was stage 4 and my pain was horrific.

I've had a mixture of operations both NHS and private. Twice with the same surgeon once private (medical insurance) and once NHS (when the insurance wouldn't pay). The benefit with private from my experience is timescale. I was in within 4 days v 7 months NHS on the urgent list, although the NHS one was during covid so that whole experience was bizarre and inhumane. Other than that the care from the people in the hospital has been similar. I find it's getting past the GP gatekeepers in the NHS is the frustrating thing. I have become a polite but firm advocate for myself over the years and I will not be left to suffer because I know that's not normal or acceptable. I wish you well with whatever you decide is best for you.

[G_A_A in reply to Gardenist]

Thank you soo much for all the details, and sorry it’s taken so long to get back to you. I really appreciate the info it’s helped to put things into perspective! 😊

[ZiggyandBC]

Hi lovely, I also had a endometrioma removed as it was discovered during a scan. My lap was a positive experience and was beneficial for me as it reduced my pain massively just from removing the endometrioma. My GP also expedited me to the urgent list and then I was given a date really quickly after that (within a few weeks) I’d definitely ask your consultant about your concerns as they’ll be able to put your mind at ease but I’m 100% glad I had it done and would have another one if I needed it ❤️

[G_A_A in reply to ZiggyandBC]

Thank you for sharing your story! 😊 Yes I now have my consultation in just under two weeks so will go prepared with my questions!