What to do now? : Hello, I'm like 99% sure... - Endometriosis UK

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What to do now?

xximilixx profile image
11 Replies

Hello, I'm like 99% sure I have endometriosis as all my symptoms match up and nothing else has been diagnosed.

After waiting 3 months I finally got my gynecologist appointment. Up until this point I've had blood tests, swabs, ultrasound and an examination all of which came back clear (which I'm aware it does with endometriosis)

The doctor said he won't refer me for a lap even though I kept asking him and was trying to hint that I wasn't leaving without some progress after waiting all this time.

He just sent me away telling Me to just take pain medication and think about getting the coil (which I've considered but I don't want to just mask it all with contraceptives without getting a diagnosis first)

From reading other people's experiences I wasn't surprised that I got no where with this appointment but I just wanted to know what I should do from here?

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xximilixx
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11 Replies

Hi was this the GP that said he won't refer you for a lap or your gyno? If it was your gyno I would change and get referred to another one because that's just ridiculous you know your body so you should have the right to have the lap to see what's going on! Don't give up fight for it I had to at the beginning the GP just kept saying it's a phrase your going blah blah and I just kept going back and i said I'm not leaving here until you refer me to someone because this has to be sorted out. Hope it all works out for you!

xximilixx profile image
xximilixx in reply to

It was the gynaecologist that said it! I even asked him to check with his superior and apparently even he said it wasn't necessary. He said I can always come back if things don't get better but that's going to be another 3 months waiting for an appointment. Looking back there was also a lot of victim blaming to try and explain my symptoms when I said it was painful during sex but looking at my cervix didn't reveal anything he put it down to me 'not being in the right frame of mind' which is just ridiculous

in reply to xximilixx

I'm sorry but that is so stupid!! Who does he think he is!!? He has absolutely no right to say any of that. Don't let this stop you fighting for an answer. Tell your GP how ridiculous he was and that you want to be referred to another gyno and in my experience I just feel female gynos are more sympathetic and can understand more so it might be better to be referred to a female one. But that's just my experience obviously everyone's different. Even before going on the pill or anything you have to have the lap to see what's going on and then you are then able to make the best decision

xximilixx profile image
xximilixx in reply to

I really wanted a female gynaecologist because I really don't feel that men can relate I also didn't feel comfortable with having a male examining me but felt that if I asked for a female I'd have to wait another 3 months for an appointment. He was surprised when I told him that I scream in pain sometimes but a female would understand that. I just really wish this time had been productive so that I don't have to wait all over again for the same thing to happen

in reply to xximilixx

Yeah it's frustrating especially having to wait that long!! Fingers crossed next time it will be

Embob profile image
Embob

Hi my friend had a similar experience recently - the gynae told her she should just take mefenamic acid and refused a lap!) so she went back to her GP (one who thankfully knows that a lap is required to diagnose suspected endo) who immediately referred her to a different hospital. She is now waiting to hear back from the hosp with a date for her surgery.

Sadly we sufferers must constantly fight and fight some more to be taken seriously and receive the treatment we need. Don't give up and good luck x

xximilixx profile image
xximilixx in reply to Embob

He said the same thing to me and I said the Mefenamic acid didn't do anything to help and all he said was 'well it should' I do feel like he was just newly qualified and just following the books. I'll keep trying though!

Shellfinboo profile image
Shellfinboo

I would go back to your GP and request to be referred elsewhere. Unfortunately it's so common to have to fight to be helped . My first consultant was awful and I was made to feel like the only thing wrong was me was my head and "wanting something to be wrong" I'd been made to feel so terrible I left seeking further help for 2 years and was in a mess by the time a friend who had been through the same encouraged me to go back again. Don't let them push you off until you have the help you need. Good luck

Empo profile image
Empo

Hi I had a very similar disappointing gynae appointment recently.

My ultrasound showed adenomyosis with possible endometriosis in my bowel. But according to my gynaecologist my scan results were normal.

She refused to listen to me. Refused to refer me for a lap. Said from my symptoms she suspects endometriosis but highly likely I have IBS.

Sent me away with the contraceptive pill.

I was so angry and disappointed I stood outside the hospital and cried.

After waiting so long for an appointment to be told she wasn't going to do anything.

I am still to go back to gp to ask to be referred to someone else as I feel I wouldn't be taken seriously.

Hope you get somewhere with your gp.

It's a terrible feeling being told there's nothing wrong with you when you know there is.

I'm in exactly the same position, I'm keeping a symptom diary with all the meds they're telling me to take so I Have proof to show them next time if it worked/didn't! :) x

staceymacg profile image
staceymacg

Hey! I'm sorry you're not having much luck!

I've had similar experiences, I just had a lap by a general gynae where no endo was found but I am sure it is endo!!

I have just been referred to a BSGE Endo Centre to see an endo specialist but I'm not guaranteed they'll accept my case so I'm really stressing out :(

Maybe try that? Xx

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