feel like I already know what my answer i... - Endometriosis UK

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feel like I already know what my answer is going to be....

Neenee92 profile image
20 Replies

Hi everyone I am getting closer to my appoitment to see my gp to recieve my results from my transvaginal scan I had....

I feel like I already know what he will say to me, I think he will say that everything looks fine but like I seen many of you all say a women knows her body and I have been getting these pains and discomforts for nearly a year know I hope it isnt endo but I have a very strong feeling...what would be your advice if they come back fine the resutls should I take this further and see a specialists....or has anyone been told they didnt have it and then found out they did?

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Neenee92 profile image
Neenee92
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20 Replies
Kirstyjane profile image
Kirstyjane

All they can see with the transvaginal scan is whether you have cysts on your ovaries and if you have any strange masses in your uterus i.e.fibriods. if you had an unusually large endometrioma it might show up but a clear scan often means what you actually have is endo. You will then need a lap to confirm the endo.

Neenee92 profile image
Neenee92 in reply to Kirstyjane

oh really this is all really dragging me down i am just constantly worn out...so when i get my results and if he says that everything seem fine should i just point out that i want to see a specialist or be referred to have a lap

dabba76 profile image
dabba76 in reply to Neenee92

Hi

My scan was clear (no cysts) so they said my endo could only be minimal. Turned out it was widespread & had to have my fallopian tube removed. Endo cant be seen on a scan. I'm not sure if you have been diagnosed previously or not but if I were you I would insist on being refer to a specialist.

x

Neenee92 profile image
Neenee92 in reply to dabba76

oh really wow hearing more and more peoples stories with this is so so helpful...I have not been diagnosed with it but have seen two different doctors and from the symptoms that i am telling them i have they both said it sounds like it could be endo.

i was sent for bloods which came back clear i then went back to my doctor and told him that my symptoms were still occuring so he then sent me to have a transvaginal scan which i had last week monday i am due to go and get my resutls for this on thursday....so from hearing all that has happend to people i have been speaking to on here i will now defiantly be asking for a referral to see a specialist...

my main concern is my fertility i am so worried that it could lessen my chance of ever having children as i have already had a misscarrige this year i was really early on but this is when i started to notice all the symptoms i was getting

gemp54 profile image
gemp54

Hi, I had 3 scans showing only cysts on one ovary but I had my lap a few months ago and I have rectovaginal Endo with part of my bowel Attached to my abdominal muscles. Definitely push to take I further! Xx

Neenee92 profile image
Neenee92

omg hope you are doing as well as you can do the pain must be so bad at times...what did they end i mean like will you need to go back for any more laps? xx

lifewithendo profile image
lifewithendo

Hi

I would definitely request for it to be taken further as said above it is rarely seen on a scan and a lap would need to be done to confirm it is endo. Don't let the doctors fob you off they kept telling me it was just my IBS symptom but we know our own bodies!

good luck, here if you need to chat xx

Neenee92 profile image
Neenee92 in reply to lifewithendo

yes 100% will be taking this further when i see my gp on thursday i will update you when i have been...just want them to give me an answer why they have to take so long about it all i just cannot understand

But thanku so much it means alot everyone is so nice and understanding on here :) xx

lifewithendo profile image
lifewithendo in reply to Neenee92

ah its ridiculous isn't it, i understand their extremely busy but they surely don't have to take so bloody long. I'm currently waiting for my third lap, i went to so see my gynecologist in February and they then referred me to a specialist. I then finally saw the specialist in August. After having to constantly chase up the appointment with my gyne and GP and the hospital, i was just getting pasted from pillar to post. They kept telling me i wasn't on the system and then i was, then they lost my notes and then they even told me that they put my notes in safe place at my GP but forgot to log them... blah blah blah. I then didn't get my letter until week before last, my pre op should have been today but now next week and my lap is end of the month, i just really hope they don't change that! Sorry for ranting on and on.

aw you're welcome :) xx

Neenee92 profile image
Neenee92 in reply to lifewithendo

Haha no worries hun rant away you know the joke is that i actually work in a hospital so I know they are really busy but then most of the time its certain people just cannot be botherd to do what there paid for...my little rant of the day.

but i almost feel that they dont believe me when i tell them how much pain i am in i mean the first time i went to my gp basically told me i am a women and women get these types of pains some worse than others and we have to deal with them :@ so after my 3rd visit i said i know i am a women and i have been having periods since i was 11 years old i know when something is different these are not normal pains.

but speaking to all you lovely people i will now defo not be leaving that gps on thursday until he has mad a referral to see a specialist.

xx

Hey love. I know exactly how you feel. I have been on my period for a year and a half and have sometimes been in the emergency room with the amount of blood lost. They have found cysts in an ultrasound but nothing else. I have asked to see my gynaecologist and I am still waiting (it has been 8 weeks) for a letter in the post. I'm so worried they'll tell me I'm fine because then where do I go from there?

I feel like we aren't taken seriously enough. We just have to push through and listen to our bodies. I hope you get the answers and help asap and if you ever want someone to talk to, send me a message I'm a good listener 😊 best of luck x

Neenee92 profile image
Neenee92 in reply to

That is so bad you must be so drained with it all especially with all that blood you are loosing, this really angers me that people are just left to get on with these type of things like you said a women knows her own body!!

any little message i get right now is a help so yes i appreciate your comment so much and i will keep you updated with my outcome on thursday...i really hope you get your letter through so keep ringing to push it more so wrong that you have been left to wait this long :(

thanku so much and let me know when you do finally get your letter through what they say to you

xx

Hi

Could you ask your GP to send you for an MRI? If your bloods came back ok then the ultrasound probably won't have any answers... they can only detect endometriomas but the bloods would have picked those up anyway. Some GPs don't seem to realise how limiting ultrasounds are. My endo diagnosis was by detailed MRI. My GP booked one and then referred me to the consultant.

Just be forceful with the GP. Make an appointment with another one if you get no where I actually find the make GPs at our surgery are the most understanding. All the best. X

Endo19 profile image
Endo19

Don't know if this helps but I recently had an ultrasound and internal scan, cleared me for cysts but saw secondary signs of Endo, so there might be other signs indicative of Endo. I had fixed ovaries which indicated my Endo is back (was diagnosed 10 years ago) have had 3 laps this will now be my fourth. Was ok whilst on the pill coming off has resulted in my Endo returning which was inevitable but was also holding hope for pregnancy. I was also told if we still struggle we won't be eligible for IVF as the existing condition must be treated, so I have to have the lap to confirm the Endo and treat the effected area and then see what happens.

Hope that helps you somewhat I know what it's like to have lots of questions with little answers.

Neenee92 profile image
Neenee92 in reply to Endo19

Hi endo19

Thank you for your comment it is much appreciated...so sorry to hear that your endo is back hope you are coping with it as much as you can...how are the laps are they really painful afterwards?? that's the bit that is really scaring me :( i have not been referred to have one yet but spoken to so many people on here now and think this is defo the next step so i will ask to be referred to see a endo specialist on Thursday when i am at my gp's.

The bit about the pregnancy really worries me as well as i had a miscarriage earlier this year and now worried that this could stop me from trying for a baby with my partner when i am ready because i am worried that this could happen again so thursday i need big answers.

i will let you know in thursday what my next step is...thanku again it means so much and is alot of help for me :)

xx

Endo19 profile image
Endo19 in reply to Neenee92

I'm not going to lie they are painful afterwards but you do heal relatively quick as its keyhole surgery. I hope you get the answers that you need and try to stay positive as difficult as it may be.

Vicki_Ann profile image
Vicki_Ann

Push for that lap regardless of the US results. I lost count of how many ultrasounds I had that showed nothing significant before I got so fed up I paid for a private appointment with an endo specialist. One doctor even took a transcervical uterine biopsy while I was conscious without any local anaesthetic.

Some healthcare professionals just are not clued up about endo and diagnostics required so keep pushing.

I know it's draining, but it's worth getting that diagnosis and no longer just being dismissed as a wimpy woman moaning about her periods!

Neenee92 profile image
Neenee92 in reply to Vicki_Ann

Hi Vicki_Ann

thannku for taking the time to send me a message it means alot... I just feel so lost at the moment just need some answers :(

But yes I will defo be pushing to have a lap even though i am very scared but from speaking to many people on here this seems that this is the best chance i have of finding out if it is endo.

I know what you mean about the scans it seems like thats all the seem to think of when the pain continues you would think that they would then try something new but nope.

I have come to realise that my doctor has no idea what he is talking about i told him more about endo when i saw him than he could tell me lool but i will defo be asking on thursday so i will let you know what happens.

thankyou again means alot :)

xx

Neenee92 profile image
Neenee92

Lets hope i get some good answers 2mrw my birthday aswell so hopefully i come out of my gps with a smile so fingers crossed i get a good outcome, thankyou everyone that has taken the time to reply to me all your advice has been a real help :)

xx

Endo19 profile image
Endo19

Hi

Just thought I would update had my third lap last Friday and I'm not in as much pain as ones I had previously. I was nervous about recovery also but I'm there now and am doing ok, obviously in some pain but five days on and it's getting better slowly.

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