Laparoscopy?

[BananaShake]

My MRI came back and shows I have Endometriosis round the ligaments of my womb, it doesn't look too bad apparently, they can't see anything too worrying. I am on the pill (Eloine, 20mg) which I take without a break and I have the Mierana coil - I haven't had a period or any pain apart from when I poo in the last two years as a result of this treatment. The pain when I poo is not too bad.

I have been reading about the surgery, and I'm really nervous about it, and now wondering if its necessary, as I read the pain/endometriosis returns within 50%- 80% of cases in two years.

I am wondering if anyone else has NOT had the surgery and why, and how they feel about this?

Or anyone who HAS and feels it was necessary?

Thank you

[Suzy23861]

I’ve not had the surgery when the pain was manageable but a few years later it got worse and I had surgery as I had a cyst as well and it was the cyst causing my worst symptoms.

[Samaher87]

There are two types of surgeries, ablation surgery which has a high rate of recurrence and some patients continue to feel pain immediately after surgery, and there’s excission surgery which is the best route and has long lasting pain relief, according to the Center of Endocare website:-

“Estimates indicate extremely high rates of recurrence for non-excisional surgery; between 40-60% even as quickly as 1-2 years after ablation even with medical suppression post-operatively [Yeung et al.]. In contrast, surgeons utilizing excision report rates of long-term relief in 75-85% of their patients.”

[BananaShake in reply to Samaher87]

thank you, I had read this and although he was quite hard to talk to , I think the surgeon said it was excision surgery- if they know ablation surgery has such high rates of recurrence why do they bother doing it??

[Samaher87 in reply to BananaShake]

They don’t have the experience to do the excession surgery and would rather do it then refer you to another surgeon. I know, it’s incredibly sad.

[Jonesy84]

Hi BananaShake, I had a laparoscopy done as I had a cyst removed from my ovary and Fallopian tube and whilst there had a look for endometriosis. My periods were always painful from the day I started. I didn’t have pain outside of this though. I must admit it really helped me as once that cyst was removed I went on the pill called marvelon and tri-cycled as I was getting bleeds between periods and my period pain were hardly there. The actually operation was fine and the worst pain for me was my shoulder. The first thing they do is fill you with gas to basically pump your stomach up but some of the gas might get trapped which happened to me. It only lasted a few day but my tummy wasn’t that sore as I can remember.

[BananaShake in reply to Jonesy84]

Thats good to hear that you found the operation fine and don't remember that much soreness. The pain in your shoulder was from a vein ? I am quite pain sensitive which is annoying!

[Jonesy84 in reply to BananaShake]

No the pain was from the gas that just travelled up to my shoulder but it didn’t last long and honestly so glad I done it! When is your op date?

[StefaniaJW]

If you are not in much pain or are not looking to conceive, you can always choose to postpone surgery, but full excision with a highly skilled surgeon (there are many working within the NHS) leads to less than 10% recurrence rates. I have no idea where you got the statistic that 50-80% women go back to being in pain just a few years after, I can guarantee you experienced surgeons guarantee much happier outcomes.

P.S.: endometriosis on the utero-sacral ligaments is extremely common as a site for endo but an MRI never shows all endo lesions, only surgery can pinpoint its locations exactly and guarantee its full removal.

If you do get surgery however, make sure it's with a highly skilled and trained surgeon.

[BananaShake in reply to StefaniaJW]

Thank you so much for this - really clears things up for me- the surgery is under Dr Richardson's team at Chelsea and Westminster who I googled and it says he is a specialist in endometriosis- its hard to know how skilled he is though?? and also it might not be him, its under his team.

I've read in multiply places that endometriosis can never be cured and it often returns??

Thats so good to hear that after the surgery, hopefully it won't return!

Also I hadn't really considered that the surgery would also help to identify where it is apart from the on the ligaments, thats another good reason to go for it..........

I'm just really nervous about it, that it might go wrong, or that I will be in loads of pain afterwards for ages, and I won't be able to work (I have a very physically job.....)

thank you so much for your help x

[StefaniaJW in reply to BananaShake]

According to what I read, yes, that is a BSGE centre and that would mean he performes excision, which is great, BUT here [This post has been edited in line with Endometriosis UK's code of conduct]