What has been the silliest diagnosis or a... - Endometriosis UK

Endometriosis UK

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What has been the silliest diagnosis or advice you've received from a medical professional relating to period pain or Endometriosis?

willowjade222
willowjade222

I first went to my GP with symptoms when I was 13, shortly after my first period. I was in severe pain, unable to move, passing out and vomiting. My GP told me it was normal for my age to have period pain and I was probably underweight and "should try eating more cheese and apples".

I'm 27 now with the same symptoms with more added over the years. After such a long time being told it was normal or "it just happens to girls" i'm only now able to accept that it's not normal and i'm trying my best to get a diagnosis.

24 Replies

Been told I just have “feminine problems” and my periods would be easier if I found a man and had lots and lots of babies 🤨 still fighting for a diagnosis for my period pains, even if it’s not endo, but my periods are far from normal! X

skybluepink
skybluepink in reply to cmbxm

They will probably diagnose endometriosis at age of 71 like me with when could be because of conditions utis & BV & are a risk from other conditions the NHS ignores early diagnosis.Surely this could not be because of Funding & benefits which may be needed as time goes on . Yet insurance companies regard as preexisting not insuring that which NHS has deliberately ignored .This doesn't make ethical sense?

cmbxm
cmbxm in reply to skybluepink

That’s the sh*t thing, I can’t go private cos I can’t get insurance, nhs don’t want to do anything, feel like I’m hitting my head against a brick wall! “how is this ethical?” is a brilliant question and to be honest, if my next consultant wants to dismiss me I will be asking them that exact question!

ElizabethC
ElizabethC in reply to cmbxm

Oh my, I had something similar from a female GP who said I should just get pregnant and then won't have any more problems with period pains as apparently pregnancy and having been pregnant would stop the pain. As my mother had had two children and two other pregnancies (both of which were miscarriages) and STILL having period pains, I knew that was totally untrue.

Also, I was 17 at the time! Totally irresponsible thing to say to a teenager.

cmbxm
cmbxm in reply to ElizabethC

I’m only 19 now, the whole “have babies” thing started when I was 16, I’m so happy I’ve got my head screwed on and didn’t listen to all those doctors, makes me worry how many teenage girls have deliberately gone out and got pregnant cos their doctor has told them it will make them better 🤦🏻‍♀️ it’s so irresponsible and any doctor who suggests that needs their license removed x

I’ve been told so many things like “I’m too young to have endo” (I’m 19), “I should lose weight even though it won’t help my pain, I’ll just look nice and slim even though I am not overweight or anything. Another gynae told me to have a baby at 18 as temporary relief 😂

I’m still waiting for a lap but it was long and difficult process that including paying £214 for a private consultation with an endo specialist who was amazing xx

My mum took me to the doctor at the age of 12 after heavy irregular bleeding and he suggested she get me more sanitary pads and prescribed iron. No thought or consideration as to why that was happening, no tests or anything.

The nurse we saw on the same day suggested to my mum that maybe I wanted to see regular bleeding because maybe I was sexually active and wanted to know that I wasn’t pregnant. What?? I was 12!!!! And fed up of bleeding everything 9 days!! The older I get the madder I am about it and the more unacceptable I realise it was!

I told the general gyne that I was so so exhausted I was too tired to do normal/essential things like get a bath and wash my hair-his idea 💡 join a gym! Yeah I will definitely have the energy to do that while I feel like this 😂 same guy said “it’s probably not endometriosis, very much doubt it as it didn’t show up on your ultrasound” 🤦🏼‍♀️ at this point I knew I needed someone else!

Yep the untrasound! I think I’ve had about 3 now and every time they’ve said it’s not endometriosis and I believed them because they are doctors and should know!

My pain started when I was 16 and I knew that it was endo, I was told by several doctors to just deal with the pain and it should settle down in 10 years time and that it couldn't be endo as I was to young...I'm now 20 and had a laparoscopy in April and still no better 🤦🏽‍♀️

When I finally went to the dr after years of heavy very painful periods, passing out, bleeding from rear etc I was told “I didn’t really want to be messed about down there”. This was a female dr referring to getting an gynaecological appointment.

I suffered from shooting abdominal pain on the right side when I was younger and my very eager doctor decided its chronic appendicitis , had surgery to remove appendix and 1 week later once painkiller wore off I was in absolute agony then they found big ovarian cyst not sure how they missed in Ultra sound scan before .Had another surgery to remove cyst and then it confirmed it was endometriosis all along nothing to do with my appendicitis.

willowjade222
willowjade222 in reply to niggle

That is absolutely ridiculous! I had a friend who had her appendix removed because of a miss diagnosis for Crones disease too! There is far to much guess work and trying to save time when it comes to diagnosing conditions that aren't fully understood.

After vomiting several times and collapsing, and being rushed to hospital with crippling pain, I was asked if it was wind! Turns out a chocolate cyst had burst!

I think doctors are useless like told me for 14 months after I had my son 5 years ago that it wasn't endo after endless scans hospital admissions decided to do a lap that's when they found it and didn't help me one bit made things worse but awearness needs to be raised and doctors need to listen to us more at the end of the day we know our bodies and know when something is wrong with it xx

“Are you stressed?” Is my favourite one 😂 yeah I’m stressed mate, stressed cos no one can figure out what’s wrong with my body!

C2691
C2691 in reply to cmbxm

This drives me mad too. Stressed or depressed 😩😩😩

I had to go to A&E because of severe dysmenorhea in my teens.They asked if I had had an abortion hadn't even had sex ? Eventually the Pill controlled the symptoms no one mentioned endometriosis yet had a D&C & signs of lip- Lymphoedema only just diagnosed at stage 2 at 71 yrs. I Used to turn green & was nauseous in fact they suggested didn't go to work ii caused such a problem.After menopause still had the cramps after HRT had masked. Now cannot tolerate internals .Yet the issue re chronic cutis acute 3 weekly interspersed with BV still is not being planned for & managed appropriately. And I believe there is a genetic risk which could render the endometrium eventually cancerous because of the nitrites .Do they want to Know?

Surely this is not another MeToo Situation again .

So, a lot of my endo pain relates to painful intercourse. I have lost count of how many healthcare professionals have asked me "have you thought about trying lube?", "you are aroused before you try, right?" and, my personal favourite, "how big is your boyfriend's penis?"

Hahaha! Yes I had something similar, the doctor handed me a leaflet on foreplay!

My diagnosis’ in just the last 4 months in order: UTI, IBS, appendicitis, a cyst & polyp, a sprained hip (this was my favourite because I literally told the dr that they found a 5cm cyst on my right ovary and that is what is causing my pain and he continued to tell me I’ve sprained my hip😂), then I got told I need to have an STI year? (I knew I had a 5cm cyst?!) then finally after surgery endometriosis !!!!

Last week as I was waiting for my surgery, my consultant still told me I’m too young for endo and I’ve been taking cerazette for 2 years so can’t have endo.... 2 hours later I woke up and they had removed my moderate ENDOMETRIOSIS!!!

CJessicaD
CJessicaD in reply to CJessicaD

An STI test***

That taking 20 advil a day is normal

Oh my god yes, I've had so many STI and pregnancy tests! It's so frustrating, I say I've been in a monogamous relationship for four years and I was tested like, a month ago, and they're like "... we'll just test you again, just to be sure!"

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