Lap three weeks ago, consultant today...... - Endometriosis UK

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Lap three weeks ago, consultant today......

worth71 profile image
6 Replies

so my first lap was three weeks ago, i awoke to be told by the surgeon that i have severe endo that was too severe to treat at the lap, and that a hysterectomy inc ovaries etc will be required. That was pretty much it and for the last three weeks i've tried to get my head around whats best thing to do, as you hear that hysterectomy does not always cure severe endo, and then the hrt debate.

So i see the consultant today, it was blatantly obvious he had not read my notes, as he seemed to think i'd just had an ablation for a bit of heavy bleeding and said you should be fine in a few weeks!!!! i asked why i was told to have a hysterectomy etc, he then looked at my notes, oh yes i see you have a few spots of endometriosis, he then drew a diagram of the uterus etc and explained that endo flows back through the fallopian tubes and lands in the pelvis, he then told me my ovaries are stuck to various other parts of my pelvis, and its in between bladder, womb and bowel and oh yes there is lots of it, yes this might cause some pain, hmmm you reckon :/ i asked why it wasn't treated at the time of lap, he seemed to avoid that question. he said give it time to allow the ablation to sort out the endo pain, and within two minutes contradicted himself and said the ablation wont help endo pain!!

he said see me in three months, i got a little tearful, he said he could put on the list for a hysterectomy, i asked would they remove the endo at the same time, yes he said, i forgot to ask how they would remove it, he then said yes remove it all and pop you on a bit of hrt if you need it, i asked about the hrt and endo that will it cause it to grow again, he said that no it doesnt and that it is a myth!!

its now left i will see him in two months, he has put me on the list for a hysterectomy but i still feel had i not raised any questions that he would have just sent me on my way, purely because he hadnt bothered to read my notes, he also said no rush for the hysterectomy as its not like i have cancer is it!! so i feel i've wasted that appointment as i just didnt ask the right stuff, but he kind of threw me by his initial lack of what i was there for, but he was so hard to ask questions, he was nice enough but i feel all what i've read up on, the real womens experiences he has poo pooed, he is meant to be the endo specialist for that hospital.

i'm in far more pain now than pre-lap, i'm not sleeping barely due to extra pain, or i'm having to go the loo 8-10 times a night since the lap, i'm not drinking before bed, i've not stopped bleeding since lap, i was actually on my period when i had the lap, carried on bleeding and now my period has come i think, i asked would the ablation work yet he didnt really know.

he sent me out to wait to get my paperwork for next pre-op, as he came back out he said are you ok, and put his arm around me and patted my back, in quite a compassionate way, i think he actually read my notes in those few minutes and realised what had been going on.

Gp on friday, i know she won't be happy with how this appointment went, at least i'm still in the system though - any advice would be good though guys xxx

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worth71
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worth71 profile image
worth71

I still can't get my head around the no treatment of the endo whilst having the lap, I keep reading everyone else's stories of their laps and that they were treated for endo, I feel a bit cheated - sorry just having one of those days xx

kellykeloggs profile image
kellykeloggs

Same here worth! Ok they didn't expect to see the endo but as I agreed to as much as losing a tube and an ovary (which they didnt take out in the end) why not clear some of it rather than waking up to hear hey you still have pain as we took nothing and did nothing but we have photos of what we saw for you to look at!!!??? Oh and we wont see you for MONTHS and leave you more questions than we are prepared to answer!! :(

lillyflower profile image
lillyflower

Hi what a horrid day you've had! I hate that when they haven't read notes my surgeon did that before my op its really un nerving! I wasn't offered anything other than told to buy pain relief until my follow up appointment and my pain is still worse now than before op so can totally understand that. I'm glad he's put you on list as at least it keeps things moving and hopefully you have a good doctor who will be able to answer all your un answered questions and as these waiting lists can be long you have plenty of time to make sure you get all the answers before you make your final decission. If you see the gyni in 2 months time maybe you can write a list of all the things you wished you'd ask and then hand them over and make sure he addresses all your concerns and questions. It's so easy to forget things when they say something you weren't expecting too! I'm afraid I cant help with info on hysterectomy or hrt but want you to know I can understand how frustrating this is. I'm already worrying about making sure I address everything and know ill forget something or walk away more confused!

I hope the doctor clarifies things for you and I'm sure others will help with info from their personal experiences too. Hope your pain settles soon too I think the extra pain actually makes it harder to deal with things seems to with me anyway! Good luck Friday xx

worth71 profile image
worth71

Thanks guys, I think we spend so much time wondering before we get the 'lap' all the ifs, buts etc, and then ok yes you have endo but I still feel as lost as I did before the lap - and yes he just totally contradicted all we've ever been told on the endo/hrt thing, I wish I could've seen the surgeon that did my lap, the few mins I had before and after the lap, he was one of the best gynae docs I had seen ever - I feel this consultant is basically trying to shut me up by just giving me a hysterectomy, it was nothing to him, but this is my life, I have to be sure they do the right thing for the right reasons, I also have to have a proper cut, it can't be done by key hole which I'm not keen on, as even though I've lost weight, I am still over weight so I'm worried about a bigger scar not healing, I'll keep working on the weight loss in the meantime - and yes my gp is wonderful, she will talk me through stuff, and yes I will make sure I ask the extra questions - I think you're right Lilly about being in so much more pain after the lap, it does make it harder, I spose it's still early days really - I'm just so emotional, I'm constantly on the verge of tears, I think it's maybe a combination of the mirena coil gone, and lack of sleep - hope you're doing ok too xx

endo_star profile image
endo_star in reply toworth71

Hi worth. I'm sorry you're having to go through all this! I had a lap last year and they didn't remove any endo at the time so I know how gutting it feels. The best thing I did was ditch that gynae and get referred to an endo specialist. I'm always harping on about it on here because I feel so strongly! General gynaes don't have the specialist skills required to remove endo properly and safely. Have a look at this link and see if there is a centre near you, you have the right to a 2nd opinion so your GP should refer you bsge.org.uk/ec-BSGE-accredi... xx

purpleburple profile image
purpleburple

Hi Worth sorry you're having such a bad time of it:( FWIW the ablation I had done three years ago was brilliant in the way it sorted out my heavy periods but unfortunately I've had pain on and off since then. The laps I've had since to remove cysts and endo have also only removed the pain for a short time. As I recently posted I'm now back in pain and the last few days it's been mostly quite an intense burning pain:(

Like yourself it looks like I will have to consider a hysterectomy but it's not something you can just fit in is it? I have three children and they're lovely but it does mean life is always busy and if I'm going to undergo a hysterectomy it needs to work! As you say there are all the pros and cons re HRT and the endo returning.

doodah is right you can seek a second opinion. The gynae who did my last two laps is a specialist in endo and there are a few about. He was actually my second choice as the initial gynae I saw on the NHS I wasn't happy with, (my first lap and ablation I had done privately). I think eventually you get answers but it does seem difficult to find them.

Hope you feel better soon x

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