I am absolutely bloody ( excuse the pun ) gutted. I had my lap this morning and when the consultant came to see me she said :
‘Well you’re really too young for endometriosis so we’ll have a look , but I don’t think we’ll find anything ‘
From that moment I knew the effort would not be put in to me.
I came around to be told - no sign of endo , or anything really and if it’s minute I just have to wait for it to develop. She said my bowels look very slightly odd but nothing too bad. I asked well then how does this explain my bleeding for 30+ days or the fact NOTHING can touch me down below . She didn’t have the answers - expect for saying maybe it’s in my head and I neee therapy . I just burst into tears! I know that I’m in pain , I know I can’t live a normal life of an 18 year old and I KNOW I have not made this up !
She even decided to tell my mum endo doesn’t really exist in this age group , even though my. Mum , nan and aunties all had it from 15 and had a hysterectomy before they were 30!!!!
I can not believe that in 2018 I’m still being told it’s in my head! My 65 year old grandma was told the same thing !!! That was nearly 40 years ago !!!
Just gutted ! X
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Lucy_x
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I know..that was one of the things I was dreading! Kinda in two minds..at one..I kinda wanted them to find something so I had some answers for everything..But the other kinda didn't..It's weird! I'm sorry you didn't get the answers you wanted as I know how I would of felt! xx
Hey, did you have your lap with an endo specialist or just general gynaecologist? It doesn’t sound like they know what they’re talking about and it’s stupid to say if it’s minute you’ll have to wait for it to develop! I wouldn’t be happy with that explanation. Did you see the pictures that were taken during your lap and did you ask where they looked during it?
I’ve been through this and know exactly how you feel it really is horrible and I’m sorry you’re going through this. After my negative lap I was referred for a second opinion with an endo specialist and they did a repeat lap 4 months after my first one and he found endometriosis in 4 areas. It’s possible they did miss it or that you have microscopic endo or even possible that they didn’t look properly. And by the sounds of things they’d made up their mind before they operated on you which is totally unprofessional. If I were you I’d make a complaint to PALS and see if you can be referred to a specialist in the meantime. I hope this makes you feel a little better about things and if you have any questions just send me a message x
Thankyou so much for your response !!! I’m so pleased that other people beside my family agree that this is all just stupid ! Anybody who knows me , knows I’m not healthy at all when it comes to my tummy etc. I’m not saying I want it to be endo , but it is something and now I’m back to square one.
I’m already looking at other consultants to try and get some other opinions and I hadn’t even thought about contacting PALS, but that’s a really good idea!
Oh also it was a regular gynaecologist and they wouldn’t show me any pictures because they said the printer was broken ! Endo seems to be in very peculiar places with my family ( we like to be awkward ) - and it’s always behind organs or around the kidney areas etc - which they didn’t examine either. It’s also been common for my family to have blood in their ovaries which wasn’t picked up until a hysterectomy or ovaries full of cysts - just feel so low ! Sorry for the rant xx
That sounds weird my first gynaecologist who missed endo also refused to let me see the pictures and he only looked at my reproductive organs whereas I had it on my pelvic sidewall on both sides and in the POD and behind my uterus. It’s totally understandable that you feel so low I know how awful it made me feel! I would definitely try get referred to a BSGE centre to see a specialist for a second opinion. Also if you do contact PALS it might just help speed things up a bit if you tell them how bad the care you received was. Thank you and I hope things start looking up for you xx
Really ? How strange . I can’t believe this is happening to women still !! I’m going to try my hardest to get a second opinion and contact PALS . Thankyou for your kind words xxx
Yeah I know I really don’t think it’s fair for just general gynaecologists to be doing these operations! I hope you get some answers and fast! No problem I hope it’s helped and feel free to send me a message if you have any questions or just want to talk! Good luck xxxx
So sorry to hear this you poor thing. How do you feel about pushing to get a second opinion? You know your own body and your family history. Please don’t give up. I’m 32 and just been diagnosed and had my endo removed after suffering with issues since I was 17 and not even getting my first lap until I was around 25. I was (which is unusual for me as in really stubborn) too accepting. Don’t accept the pain. Good luck. Rooting for you xx
Thankyou so much !! I’m going to have to get a second. Opinion I think , I can’t go on not doing anything . I bleed for 30 days sometimes , I bleed through a night pad and a couple of pairs of pants in a couple of hours , it’s just not right! If I’d gone in with something physical like a broken arm it would be a different story ! Nobody can see the pain of my stomach etc , just so frustrated !!
I’m so sorry it took you so long to be diagnosed as well, I hope you’re feeling better xxx
You’re quite correct - it’s not right you’re dealing with that. It must be so frustrating and depressing for you, compromising your quality of life in that way. Go for the second opinion for sure. I found keeping a long list and diary of all of my “problems” and being quite clear in how I explained it and how badly it impacted me over and over again finally started to get people listening.
Thank you. I’m sore today from my lap as expected but emotionally positive! X
you must see a bsge specialist. write down your symptoms and u must make it clear to them how it is affecting your quality of life. if u were to see the dr that did the lap then u need to say as they havent found anything during the lap that further investigation is needed as your symptoms are still persisting. i think u would benefit from an mri but can be difficult to get one.
Hi Lucy I'm sorry your going through this I'm also going through the same thing and very confused with what's going on I'm getting very emotional everyday since I had my lap on Monday. If you need to chat I'm here as it's nice to talk to people that are going through the same thing.
It's terrible that you have to go through this because of a clearly inexperienced consultant who also has a very poor bedside manner.
I don't think you mention how old you are? Just curious what made her think you are too young?
Don't give up. Please try to find a good endo clinic/specialist and go in and tell them all your family history etc. In the meantime, have you tried any treatments like the pill or mirena?
Thankyou so much , I won’t give up - I can’t ! I am only 18 so I am rather young still - but like my mum tried explaining to her , statistics don’t mean anything when it comes to medicine etc . I’ve been on all sorts of pills and they actually don’t help - of anything it makes me less regular. I’ve had a very very brief chat about the coil - but right now I am in so much pain after just being touched down there , I don’t think the coil would be the best move .
1 - it doesn't sound like they know what they are talking to, unless its a BSGE accredited centre and specialist I wouldn't believe a word out their mouth. I can straight up tell you Endo is thought to be genetically linked and the running theory now is it can be caused by certain stem cells in parts of your body becoming endo tissue by accident, no one is "too young" to get it.
2 - you can complain through PALS if you are in England or the rest of the UK - I still haven't figured out what the equivalent in Scotland is
3 - by law you can get a copy of EVERYTHING from the hospital. Request a copy of your notes, scans, all records they hold pertaining to you. It might come in use later, but also, you will have proof of your suspicions about how you've been treated. IF you have issues with this patients-association.org.uk/ can help, they’re currently helping me get my medical records from the different hospitals I’ve been at.
4 – demand to be seen by a BSGE accredited gyno and keep demining it and keep demanding and keep demanding until they do it, eventually if you kick up enough of a fuss they’ll do it to shut you up.
Thankyou SO much !!! You’re so kind to outline all those things for me , as sometimes it can be so overwhelming !!! I will be complaining to PALS and getting a copy of my images - Thankyou for the link of us difficult !
Oh my gosh it’s crazy that medical professionals can still be so blind today when it comes to ‘women’s trouble’ - I said to my mum why on earth would I be making this up ? I can’t do anything ? That’s not like I’m gaining anything !!
She said my bowel looked slightly distended ? But she said that WOULDNT cause all the other pains and bleeding etc ? She tried saying I may have a clotting issue but after ruled that out once I pointed out I had teeth extractions and tonsils out which were fine ( these were on my notes ). So she’s said the gynae department can do no more for me there.
I’m going to request the pictures back because I think that’s so poor the didn’t mention it.
My dressing from the cuts was leaking and the nurses changed it for me but didn’t wipe away any of my blood & have sent me home with no pain relief . I’m just absolutely devastated.
Don’t get me wrong some of the nurses were absolutely brilliant !!!!!! Just feel the overall conclusion is poor xxx
18 is not too young for endo. Even if that consultant didn't find endo she should have offered a follow up for more investigations.
Yasmin worked the best for me in terms of the pill. Everyone is different though and your situation sounds very difficult. If the pill hasn't worked for you the coil might not work either. Zoladex would be another option but you probably need to see and endo specialist for that anyway.
Your family history should tell them a lot and they should investigate accordingly.
Thankyou so much , I’m just recovering and then will be pushing for a specialist with everything I have ! Thankyou so much for taking the time to think of me xx
They've treated you terribly! I feel frustrated and disappointed for you. The writing was on the wall when they said before your op that they don't think they will find anything. And they sound so stupid saying that you're too young. I'm sorry this has happened, but reassure yourself that it's not over. You deserve to be properly diagnosed. You will get your diagnosis, so try not to worry. Focus on recovering and looking after yourself, and don't take no for an answer. Take care of yourself x
Just to let you know your never too young! Im 19 and has stage 3 endo so it can definatley produce in people 20 and under! Endo can be hidden in odd places and can be different colour that can easoly be missed. Never give up if ypu have a gut feeling it is usually correct. Did you see a specialist? And keep pushing i was ignored for 8 years but got my result sending love your way any questions let me know xxx
I feel your pain! I was told it was all in my head and then when surgery found nothing, they refused to even bother with anymore scans. I decided to come off the pill, and have felt so much better for it, and also for the same reason as you stated, that if any develops, they will be able to see it in future I hope! I found a painkiller that helps with the period pain like nothing else ever has, and it took a lot of trial and error but I finally feel like I'm getting there! After my last transvaginal came back clear I decided to stop pushing because it's exhausting fighting your corner and having literally no one believe you!
I have vaginismus and vulvodynia so I get where the nurse was going when she said it might be 'all in your head' but that's a really crappy way to have it worded to you, especially straight after surgery! Maybe vulvodynia might explain the pain as to why it hurts to be touched? And while that is 'all in your head', it's a valid medical issue that there's treatment for! Also if your bowels look strange, might be worth asking about IBS or IBD as I had this and since I started treatment for it, the pain that I always thought was in my womb has reduced drastically!
I'm here if you ever need to vent/chat, all the best! x
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here if you wana chat xx
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