Dead end...

[Nunu88]

So I've just had my 2nd laparoscopy which involved excision of endo, removal of a chocolate cyst & ovarian drilling. I'm now 8 weeks post op and I'm still getting pain - the same kind of pain I was getting prior to surgery. I've heard it takes a good 3 months to fully internally heal from excision so at the moment, I'm assuming the pain is down to healing still. But come 3 months, if I'm still getting pain...what am I supposed to do? I've been discharged from my consultant. Has anyone else experienced still getting pain post op?

Also, I've heard that being on the pill doesn't actually help Endo hence why some people are put on prostap etc. Is this true? Should I not be on the pill then? (I'm on Yasmin).

So many Q's - so confused! Answers needed xx

[luthien]

The pain can still be healing, it can take your body time, so patience is required

It can take up to four months for healing to be complete, depending on how much was done including moving things around. It is a routine surgery however it's still a surgery.

Do you have a check up? I will have mine at 4 months post op where they will check how I'm feeling and any other pains I have plus worries and concerns for the future. If you've had that at 2 months it seems a bit soon to sign you off from your op.

Everyone suffers differently from endo, some have lots of endo and little pain, some have a little endo and lots of pain, some have lots of endo and lots of pain, some have little endo and little pain. So the amount of pain you're in is not always related to the amount present. Also endo cannot be completely removed, there are always cells that will stick and start the process again, so it may come back, but it comes back at different rates for different people.

You are right in that the pill doesn't directly help endo, it will make you feel better, so less symptoms as it kind of puts the endo into hibernation. It is still there though. For some people that's enough to manage and it's all they want; pain free or less pain, for a short while until they decide what to do or long term as they're okay with it. For others they want a fresh start so to speak, so an op will remove the visible endo and allow them some time with no pain, time to consider what to do for the future or to get their life back and have some freedom. Being on the pill is entirely up to you, you shouldn't feel pressured to be on it; I'm concerned that doctors seem to be using that as a default treatment and an op second. It really should depend on the person, their place in their life, what they want for the future, if they want to think about the future. It shouldn't be advertised as a quick fix, its a hormone and there are side effects.

My specialist says that he usually sees about 50% of people after surgery back with symptoms again in 2 years; and the process / thoughts for op or not or treatment with hormones can start again.

I hope whatever you decide it works out for you and wish you a speedy recovery x

[Nunu88 in reply to luthien]

I've been on the pill for about 5 years now which was initially given to me as I never had a regular period and have PCOS. I'm not sure if the pill is making things worse for me or not I guess - I've never really tried to come off it and see how I feel.

I don't have a post-op check up, my consultant discharged me the next day after surgery once I'd woken up. Don't feel he should've discharged me as I have all these Q's he could've answered.

Thank you farahziya for your reply

[luthien in reply to Nunu88]

no problem. see if you can book a appointment and mention that you have questions! they should be able to help. if not see if you can talk to another specialist and get a second opinion I know it's lots of calling and talking but its your body and your health!

[Nunu88 in reply to luthien]

I phoned up today and it turns out I hadn't been discharged and they are sending through a follow up appointment so will definitely be asking lots of Q's there! Thanks again xx

[Hidden]

So sorry you’re still in pain.

My situation is different to yours.

My experience is my pain never went away after my op- it improved but was always still there. My periods and gynae issues improved. My endo was in POD.

However since my miscarriage last July my symptoms all returned and long story cut short I’m having further surgery in March laparoscopy & hysteroscopy , biopsy and endo removal if found.

Did your specialist remove all the endo? Was it excised? The reason I ask is some of mine was left- he excised endo implants from back of uterus and only lazered the implant on my rectum because of the location. That is why I think mine is back.

I was lucky that I’m still under my fertility doctor who took my concerns seriously and he was the one who referred me to a general gynaecologist ( he is no longer one)

I’d see your GP or contact the surgeons secretary to explain tou are concerned that the pain is back. You are well within your rights.

Good luck xoxo

[Nunu88 in reply to Hidden]

Thanks for your reply jess1981. My specialist said he removed all the endo he found and the chocolate cyst - it was definitely done by excision and not ablation, but I'm not entirely sure where it was or how much there was (whether this relates to pain or not I'm not sure). I think I definitely need to get back in touch with my consultant/GP. Thanks for the advice! xx

[Hidden]

I think you should do. Your GP should be able to prescribe stronger painkillers so at least you are more comfortable - I am currently on co-codamol and tramadol to ease my pain till my next operation. Unfortunately endo can grow back 😳 I hope your surgeon can help you and sort this pain out. Good luck xoxo