Coil advice please: I had my third lap... - Endometriosis UK

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Coil advice please

emmaibiza profile image
17 Replies

I had my third lap nearly 5 weeks ago. No Endo had grown back so none was excised but I did have presacral neurectomy (cutting of nerves to uterus) to hopefully help adenomyosis pain. I also had the coil fitted. I started my first period on Monday this week since the lap and this morning I have noticed some big clots. I've never suffered with clots before and they are making me a little worried. Is this normal when you have the coil fitted that you can have clots? Sorry for the detailed post but wanted to ask on here before I ring my consultants secretary

Xx

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emmaibiza profile image
emmaibiza
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17 Replies
lynnieeeee86 profile image
lynnieeeee86

Hi

I had the coil fitted on 17th may and still get clots, im not worried as i always had alot worse clots. These are lighter in colour and a bit smaller. They not only just come at time of the month, they randomly appear at different times x

emmaibiza profile image
emmaibiza in reply tolynnieeeee86

Thanks hun. I don't feel as worried if you have them also. Just think it's strange as I've never had them before but these are quite big. I'll see how I get on over next few days and if not better ill ring my gynae just to be sure. X

lynnieeeee86 profile image
lynnieeeee86 in reply toemmaibiza

Yea definitely do, anytime i ever mentioned clots they always told me they were 'normal' which do find hard to believe!

Hope they settle for u xx

emmaibiza profile image
emmaibiza in reply tolynnieeeee86

I use to get clots when I was younger about 13 years ago and they always told me it was normal too. I don't think they are. They aren't nice yuk. Pains awful too. Hopefully the coil will stop my periods soon xx

Stephie2017 profile image
Stephie2017

thats good that none was found! Did you have endo symptoms before this 3rd lap? Or was it mainly to help with your adenomyosis?

xx

emmaibiza profile image
emmaibiza in reply toStephie2017

Hi hunni

I had my Endo excised for second time in March last year. Didn't help my pain apart from some tugging and pulling pains I used to get on my left side. Then since December my periods started getting worse and worse the pain was horrendous so I was 100% sure my Endo had grown back so I was really surprised when my gynae consultant said none had grown back. So it must be the adenomyosis causing my pain and I have a bladder condition called interstitial cystitis so my consultant said that can be causing lots of pain too. Wish i could have a lower abdominal transplant I'd be happy being the tester person for one haha.

Xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

I'm surprised too as doesn't it just always grow back? Was it the same person who did your surgeries before?

I have heard that adenomyosis is evil- I'm sorry that you have that :-( What does the bladder condition cause symptom wise? Im sorry to be nosey its just that lately I am really struggling to wee and a couple of times in the morning gone so faint that i nearly pass out....

Yeah that would be good wouldn't it?

xx

emmaibiza profile image
emmaibiza in reply toStephie2017

Be as nosey as you like hunni. Always helps when you hear similar situations to your own.

I have been told that if you have a good gynae consultant who excised your Endo then it shouldn't grow back in the same place. It can grow back in other areas but not where it has been excised before. Not sure how true that is.

My bladder condition is the opposite to you hun I need a wee 50 plus times a day it's awful. I look at a drink and it makes me need a wee. The presacral neurectomy seems to of helped my bladder as I don't seem to need a wee as much. I have a friend who has Endo who has been struggling like you with being able to wee. She is currently undergoing test to get to the bottom of it. Have you had laps done? Are your bladder problems a new thing? Some girls seem to have this problem after having laparoscopy. Some clear up and then some like my friend who had her last lap 2 years ago doesn't, so might be worth mentioning to your gynae consultant if you have follow up. Sorry I can't be of more help with that hun xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

Really?! Great! That means mine have all been rubbish!! Although this time I am having Laser (instead of diathermy) with a leading surgeon so fingers crossed!! Thats good though isn't it- if it doesn't come back I mean!!!

Ive had two laps- my last one was in 2013....its since having my silly rod out of my arm- you know that implant thing...

no no you were helpful!!

I do hope you get sorted though xx

emmaibiza profile image
emmaibiza in reply toStephie2017

My first lap was with a consultant who I was told was am expert in Endo and he did laser treatment and made my symptoms worse. Not meaning to scare you but a good consultant doesn't mean he's good at Endo. Is your hospital a bsge accredited centre for Endometriosis? My advice to everyone is to make sure you have surgery under one of them hospitals so your consultant is a Endo specialist. I only say that cos my first consultant caused me so many problems messing about with a laser i didn't know I had Endo or anything about it when that consultant did my surgery. When is your next lap? I have been told that when they laser the Endo off it doesn't actually get rid of the Endo as they just burn the top layer of it off so the Endo is still underneath, I'm no doctor but that's what I've read hun. Just don't want you to end up like me and in more pain etc xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

it is a BSGE one this time round :-)

You know what....I actually don't know what the hell they are planning on doing....the surgeon seemed to just know what she was doing...said she would look after me...she was certain my endo had come back from the mir results and that she will see me in 4-6 months! I don't know if she is going to be checking my bowel, how she will be doing the op...I actually don't know anything! I didn't think to ask!!! How do I not know anything?!

xx

emmaibiza profile image
emmaibiza in reply toStephie2017

Ohh good I was worrying then that you was with a consultant who doesn't know about Endo, if you are at a bsge centre you should be in good hands. Maybe you've got Endo on your bladder? I had it on my bladder and bowel last year. I might be wrong about the laser I'm sure I've been told it's a waste of time but I read that much stuff I do get confused haha. I hope you don't have to wait 6 months bloody hell that's ages away.

I literally write a list to take with me to my gynae appointments of questions haha I'd go in and forget everything otherwise xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

I did forget....i forgot lots...should I just tell them at the pre op? xx

emmaibiza profile image
emmaibiza in reply toStephie2017

Pre op is usually with the nurse but they make notes so I would ask them or tell them things you forgot to say. Mention your bladder issues too so she can make a note for your consultant hun xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

ok- thank you. I just don't want to tell my surgeon the extra symptoms on the day and then they turn me away after 6 months of waiting due to them not having the proper information and not being able t prepare xx

emmaibiza profile image
emmaibiza in reply toStephie2017

I wouldn't worry about that hun. I was just getting dosed up for being put to sleep and I was shouting to mu consultant to do a smear as I was due one and couldn't have one otherwise cos of pain. Then he was only doing the presacral neurectomy if he thought it was necessary but I was telling him to just do it anyway. I bet he was cursing me giving him lots to do and being last on the list but still mention it all to the nurse and really if she is a good consultant she will have a good look round and see everything that's wrong xx

Stephie2017 profile image
Stephie2017 in reply toemmaibiza

lol!! Thats quite funny!! Ok I will mention it at the pre op :-) Thank you....you have put my mind at rest a little. Its just weird as I have no idea what they are going to be doing and most of the time they talk to you when you are still dozy after surgery and I honestly have no idea that they have found previously...!!! xx

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