Has anyone else struggled with diagnosis?... - Endometriosis UK

Endometriosis UK

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Has anyone else struggled with diagnosis? Help!

Tortygirl123
Tortygirl123

Hi I’m hoping someone on here can help me please! I’ve always struggled with my periods and visited the doctors countless times since the beginning of high school (I’m 19 in full time work now). I feel like I always got fobbed off and told it was normal and have been given different contraceptive pills along the way. My periods are extremely painful to the point I can’t walk. And the heaviness is awful i have to carry spare clothes with me everywhere as I will soak through super size tampon+pad together in a matter of 20/25 mins. I feel ill constantly and I often faint especially whilst on my period and get dizziness too. I am on trexamic acid and mefenamic acid but they dont help very much. Finally after 7 years I got to speak to a decent doctor who suspected endometriosis, I got given a blood test which was normal so I was then referred for an ultrasound which came back normal no action required. However since that I haven’t been able to speak to this same doctor and when going back I had a rather rude Doctor who said I was a young girl and it was normal and that there was nothing else they could do for me if the scan is normal. I really don’t think this is normal and that there is something wrong with me. Did anyone else struggle with a diagnosis? I really just don’t know what to do anymore but I can’t go on with my periods like this.

9 Replies

Hi no this isn’t normal.I had what they call a normal ultrasound, nothing was found. I then had an MRI and told adenomyosis. This gives me heavy bleeding, so along through pads and clothes, low iron, clots, case labour pains.

Please change GP as you need to be investigated further, keep going until someone listens to you x

Thankyou so much for listening to me! I feel like the doctors just think I’m over dramatic and I’m making a fuss. But definitely just going to keep pushing until I get answers x

That’s okay. Maybe take someone with you (when this is allowed) or get a relative to speak to your GP during a phone consultation. I think with some doctors you have to be really strong and tell them what you expect and what you want to happen. I have a good doctor but during Covid don’t feel I am listened to at all right now, I feel in the past it is because I am older that they have taken more action x

Sorry to hear hun I no the feeling u feel like ur banging ur head against a brick wall I seen gynaecology a few weeks ago got no answers or diagnosis but been previously told its suspected endometriosis so I looked up on the Internet and luckily in my area Merseyside that there is a clinic and Liverpool woman's that specialise in endometriosis and ask my doctor to refer me to them she has done so could be worth looking it up to see if there is anything in ur area

I'm in the exact same position as you. I'm 19 and I have been struggling with the very same symptoms. I have been treated the same way, like a silly girl who is over dramatic and it is hurtful and has a negative impact on my mental heath, my confidence and my relationships with people. Unfortunately young women will always be challenged about their symptoms and the severity of it, but we have to keep fighting and demanding that we are heard! We are not imagining things, our bodies are fighting against us, and it's not healthy, which is why we ask for help. Don't let anyone crush your spirits 👍

Morning lovely,

Sorry for your experience - it's a common one, unfortunately.

My GP apparently has a special interest in gynaecology but she said I couldn't possibly have endo because I shouldn't have cramps unless they're exclusively on my period & my periods would be heavier. I did tell her that she was fundamentally wrong and I did say that she needed further training! She also sent me for internal & external ultrasounds & told me that because they were clear, there was nothing wrong.

I don't get overly heavy bleeding but I know many who do, as mentioned on this thread already - that can be from adenomyosis & can happen with or without endometriosis.

Look up the NICE guidelines for endo diagnosis & treatment & present them to your doctor. Endometriosis can only, accurately be diagnosed via laparoscopy. An MRI 'might' show some endo but probably not the full picture. Also, a general gynaecologist may miss endo because of their lack of experience, as endo doesn't just grow on ovaries, tubes & wombs (as per their ancient text books) but can spread to all internal organs, from bladder, to kidneys, to lungs, even (in rare cases) the brain.

(This only applies to the UK: - The best route is to use the website bsge.org.uk/centre/ to search for a specialist centre near you & get referred). Go private if you can afford to. I would if I could.

If anything, whilst you're going through this, you need to supplement your iron because your levels must be dangerously low - have you had a full blood count?

I'm finally on the waiting list for a diagnostic laparoscopy... It's only because of the brilliant support from this forum that I plucked up the courage to challenge my GP & get her to refer me. Otherwise, I'd still be carrying on thinking I'm making a fuss about nothing, just like the last 20 years!

Keep in touch, do lots of research & fight your corner - we're all here to morally back you up.

All the best xx

Honestly, I would call back and make another appointment with a different GP or change surgery. Someone will listen to you, you were just unlucky last time please dont let it put you off seeking help. At the very least say you want referral to a gynaecologist as the amount of blood you are losing is definitely not "normal". Ideally referral to an endo specialist as the others say, but this might be tricky if the GP is not on board. A general gynae is better than nothing and will have a much better u understanding of your symptoms.

For anyone struggling to get listened to by their GP because they are young, consider taking an older relative, mum or aunt perhaps, to your appointment. Someone who can look the GP in the eye and say "what my daughter/niece is going through is definitely not normal". Confirmation from another person makes it hard for them to claim you are exaggerating!! I realise its difficult at the moment as most appointments are being done by phone but perhaps possible to have a video call

Agree with all the advice here- I have had dreadful pain all my life- had a hysterectomy at almost 50 last year- periods were still full on , every 3 weeks and bleeding thru clothes. Don’t let this take over your life- you must push for treatment. I have just found out re BGSE and also look on Nancy Nook Endo Facebook and website pages- a US site but a wealth of knowledge on here. Best wishes xx

The ultrasound will often come back showing nothing because it can’t be used to diagnose endo even the NICE guidelines acknowledge onward gynae referral with symptom history regardless of ultrasound results! I always ask to be booked with a specific Dr when I call the reception to arrange it, if you can do that and wait a bit longer for the specific person it’s usually helpful!

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