Anybody had repeat endometriosis laparoscopies?

[flipperdoda]

Diagnosed with endometriosis 6 years ago via emergency laparoscopy for burst ovarian cyst. Planned endometrial ablation 5 years ago, extensive deposits found including on bowel, lots of adhesions, one ovary frozen etc.

Before surgery was in daily pain, since surgery that's been reduced to during periods. On hormonal birth control and run pill packs together for as long as possible before having a bleed, take full ibuprofen and paracetamol, tranexamic acid and mefanamic acid proved useless for me so no longer bother with them.

...my periods are getting worse again. 😞

Has anyone had multiple ablations, and how long did you get relief between them?

I don't want another surgery but I'm mentally struggling to cope with it impacting on exercise, mood, and work again. Also thinking I could just put it off a few years until we want a baby...but I'm utterly miserable on day 3 of period right now.

Have contacted GP to discuss painkiller options. Yes I have a hot water bottle attached to me!

It’s awful isn’t it. Yes I’ve had multiple surgeries, the amount of relief between them all varied though.

Ask for a referral and see what the consultant thinks. There’s a waiting list so you might as well get the ball rolling now. Referral to a pain clinic might be an option too.

I had a laparoscopic procedure in 2019. Having trouble again and found out I have two cysts. One is 9cm so I'm expecting another procedure to remove them. I was shocked it can return that quickly.

Unfortunately endo can and does recur.

I would also contact the GP to see if you can also be referred to a specialist endometriosis centre (they're called BSGE centres).

www.bsge.org.uk/centre/ is the link you need to look at.

I've always assumed the pain clinics are more for people who struggle with chronic daily (or nearly daily!) pain - my periods are miserable, but it's only during those times now. So maybe 4 days of pain every 8 weeks or so.

I don't think I have any more cysts although I suppose I could ask for a scan to check. I think it's just having endo. I have never expected my periods to be normal or pain-free, I just feel a bit lost about what to do. They always recommend the coil! I don't want it!

DP has a tens machine so have got that on, first time trying one and it is helping. I've already had a surgery this year and got another late autumn, I don't think I can face going on the waiting list for this as well.

Has anyone had luck with stronger painkillers? Coedeine is the only one that's helped me before but it makes me constipated, and with endo on my bowels, excruciating bowel movements during my period, and a history of an anal fissure I can't really risk it.

9cm cyst is miserable, I'm so sorry!

I know endo recurrs. I think I just always thought I'd manage to get to pre baby before likely needing another surgery for fertility reasons.

Also my mood is in the gutter so sorry if I sound like I don't appreciate any suggestions!

Ah forgot to reply to the BSGE centres point - I was actually just on their website checking! I was incredibly lucky that my closest hospital was one, so the A&E cyst emergency surgery visit led to endo diagnosis and some great care. Have since moved but there's one 30mins away still.

@flipperdoda that sounds awful. Unfortunately by the time I had my first op my tube was fucked. I have one DD but she was my lucky shot and I've never been pregnant before or since her. I think you shouldn't delay.

To be honest this is still SO much better than pre surgery that I wonder whether I'm making a big deal out of nothing sometimes! It really screws up my perception of whether it's a "this is shit but you have a chronic condition and there's not much to do about it" situation or a "no you shouldn't be expected to live like this go to a consultant" situation. I genuinely have no idea.

Are you suggesting don't delay surgery, or don't delay trying to have a kid? They told me after I was diagnosed not to delay having a kid...at age 21. Which was great of them. So now every period I also get horrendously anxious that I will never have a kid. Which is shit. But I'm 27 and my partner is wonderful and I want his kids but it's also something you can't rush into and we've been together less than two years and aren't married so...he knows once we're even vaguely ready, we don't have the luxury of hanging around, but I can't rush it any more than that really.

Surgery is different and I hadn't really considered that delaying it could have long term damage effects.

"It really screws up my perception of whether it's a "this is shit but you have a chronic condition and there's not much to do about it" situation or a "no you shouldn't be expected to live like this go to a consultant" situation. I genuinely have no idea".

I would say the latter and if you can go to be treated at a BGSE centre so much the better. Those centres are also, generally speaking, far better at overall management of more complex endo cases.

You have surgery pencilled in for late autumn; is this a further laparoscopy and if so is that being done at a BSGE centre?. I would not want more surgery than is absolutely necessary here.

Glad to read the TENS machine is working out; I could never get on with that.
Four days of pain after all is four days of pain all the same. I was also advised similarly by a gynae consultant (the one who performed my lap diathermy op on my extensive endometriosis) that if I wanted more children I would need surgery again.

No sorry both surgeries this year are unrelated to the endo, I just am not sure I can face yet another being added to the list even though it would realistically be next year - it's been a rubbish health year!

True and I remember being "told off" by a consultant for thinking that as long as I could get on with life, I was taking enough painkillers - they were very blunt that I really shouldn't be in pain every period despite it being normal for me. That's why I've asked to review better pain med options. They've booked me an appt for three weeks time, I can ask about scans and referrals then too.

I haven't straight out been told that I'll need surgery to conceive but I've assumed that as a realistic option. They did say it was widespread but actually didn't affect reproductive organs too badly so I'm quietly hopeful but would rather keep my hopes low and be pleasantly surprised than the other way around.

"True and I remember being "told off" by a consultant for thinking that as long as I could get on with life, I was taking enough painkillers - they were very blunt that I really shouldn't be in pain every period despite it being normal for me. That's why I've asked to review better pain med options. They've booked me an appt for three weeks time, I can ask about scans and referrals then too".

That consultant was correct; periods should not ever be so painful ever that any woman ends up taking pills almost continuously.

Its unlikely that endometriosis will show up on a scan like an internal ultrasound scan; I've had more of those than I care to mention and none of those detected the endo present in my uterine cavity. It took a lap op to see it all.

To my mind you need a referral to a BSGE centre re endometriosis; this is what I would be primarily aiming for as you also have bowel involvement with this.

They were saying I should be taking more pills to stop the pain ha! I'm not sure my periods will ever be painless or even mostly so. I just need them not to totally take me out for one or two days each time.

Scan was with reference to cysts as a PP mentioned. I know endo doesn't show up on them - I've had a host of scans too.

May well ask for a referral as I mentioned, they were great last time.