Just interested....

[Geordie-Girl78]

Hello I'm just interested to see if there is anyone on here who after their first excision surgery has not needed any further operations? 🤔

[Lou887]

Hi ya

I had my first lap 4 weeks ago, they found 2 small amounts of endo and they were cut out. I have been discharged from my consultant but been told if I get symptoms again to get referred back. I found it odd as I have endo but my consultant gave me options on what to do next and left it at that. Xx

[Geordie-Girl78 in reply to Lou887]

Thanks Lou - Did your consultant tell you it could come back? I've been told that there is up to a 40% chance of endo returning but didn't give me any idea of timescale. I don't suppose they'll know will they? x

[Lou887 in reply to Geordie-Girl78]

Kind of, I knew it would anyway from reading posts on here and a couple of my friends have it but they haven’t given me a timescale just said when I start getting symptoms again to get referred back straight away , my consultant kept going on about the coil and how amazing it was but it’s not for me. Did your consultant tell you where the endo was? X

[Geordie-Girl78 in reply to Lou887]

Hi Lou yes I had pelvic peritoneal and rectovaginal endometriosis. I also had endometriomas on both ovaries. I had the coil fitted and it's helped loads with the bleeding and pain. Hope you're recovering well x

[Lou887 in reply to Geordie-Girl78]

Recovery has been slow but after 2 weeks I was back at work (didn’t do a full week) I would say the last 10 days I have started to feel myself. Had my first period last week which was no where near as bad as it used to be which is a relief. Hope your recovery is going well x

[discobec]

I had my first excision surgery in November 2016 and had to have a second surgery 5 weeks ago.

My symptoms returned very quickly after my first op, so I'm hoping to get a bit longer out of this one!

Best of luck to you. X

[Geordie-Girl78 in reply to discobec]

Oh no not really that long then! When your symptoms returned were they the same as first time round? After your first surgery did you go on the pill or anything to try and prevent symptoms? Hope you are recovering well x

[discobec in reply to Geordie-Girl78]

Unfortunately my symptoms and pain were worse than they'd ever been. Although there was only some regrowth of endo around the pelvis, I had reoccurance of large endometriomas and my consultant said they'd usually deal with it by removing my ovaries. This isn't an option for me as I'm waiting to start IVF in the new year.

Birth control obviously isn't an option now but I'm sorry I didn't have it after my first surgery. I wanted to try to conceive naturally, but it just didn't fall into place unfortunately! X

[Geordie-Girl78 in reply to discobec]

I've had endometriomas removed off both ovaries I wonder if they are more likely to grow back if you've had them before? 🤔. All the best with your IVF really hope it's a success x

[jen180284]

Hi Geordie Girl, thanks for asking this, its something thats been playing on mind as well!

I'm currently waiting on my appointment for my first lap as they have determined from my ultrasounds and MRI that I have endometriomas on both ovaries and complex endo stuck to my bowel. I asked at my most recent consultation about the chances of endo reoccuring and repeat surgeries after reading so much on here about that and she basically advised that as long as i have ovaries that produce estrogen, the endo will continue to create and grow. I spoke to her a lot about the research i had done on the endo diet and estrogen cleansing etc and she said that all of these would contribute towards making things a little bit easier however as the ovaries create such a huge estrogen spike in your body each month, it most likely couldn't prevent it from returning.

I'm at the point where theres a good chance i'll need to have my ovaries removed anyway due to the size and nature of the cysts, so i'm sure i'll have a whole new battle to dealing with rather than repeated surgeries. Good luck

[luthien in reply to jen180284]

I found this a while ago, don't know if it's helpful to do with recurrence after hysterectomy / ovariectomy.

ncbi.nlm.nih.gov/pmc/articl...

It may be worth getting a second opinion from another specialist as I thought my best approach was the same, but after talking to a few specialists that approach doesn't always work and early menopause can leave you with other problems.

[Geordie-Girl78 in reply to luthien]

Thank you I'll have a read.

[Geordie-Girl78 in reply to jen180284]

Thanks Jen I hope you get your appointment through soon. Have you not had a diagnostic lap then? I had endometriomas on both ovaries too the one on my left ovary was about 7cm. The consultant managed to get everything back to how it should be fingers crossed it will last. My op was about 3 hours so quite major surgery but the difference I feel at the moment is amazing!!

[jen180284 in reply to Geordie-Girl78]

Hi lovely! My situation sounds exactly like yours. Unfortunatly I’ve had a bit of a time with the NHS and I’m on to my 3rd consultant now but thankfully she’s incredibly understanding. She feels that My ultrasound, MRI,CA-125 test, colonoscopy and symptoms are enough to confidently diagnose endo (fully appreciate that lap is genuiunly only certain way) my first lap will be to go in and remove cysts rather than diagnostic. I’ll also hace colorectal surgeon to try separate bowel from the rest of organs. It’s all a bit of a mess but as I said, I took some knocks but I’m trying to stay as positive as possible.

Sending love and positive thoughts. I’d love to send you some recipes that I’ve found and absolutely love for you to try xxx

[luthien]

I've had my laparoscopy and had some endo removed; the doc said that the rest will need to be done at some point (complex surgery) because it either will still stay the same or get worse but it really depends on how I feel.

He said once you have it, it never clears completely so its just treating it; there's lots of stuff out there that says how to help manage symptoms etc but essentially we produce oestrogen, everyone does, fat cells make it, so even if you have a hysterectomy or ovariectomy you'll still have endo but you may not have the symptoms. It doesn't just go away unfortunately.

It varies from person to person as to the symptoms, severity and recovery as to when to have further operations. Some people have further operations as a precautionary before it gets bad, some will have it once it's bad enough that they really can't cope.

I'm not sure what to do yet, but as people have said here; leaving it can make it worse as if it previously sat on the surface of the organs it can over time penetrate further, but again symptoms may / may not be worsened.