Im new here....The long wait to diagnosis... - Endometriosis UK

Endometriosis UK

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Im new here....The long wait to diagnosis begins.

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Hello everyone

im currently trying to get to the bottom of a curious pain that I've been having recently. I've been told it could be retrograde bleeding, but I have a long way to go before someone will diagnose me (coming from seeing other women and their stories)

....anyway, a little about my situation:

I've been experiencing painful periods for about 3-4 years now, but never believed it was anything more than cramps and just my dumb luck. Im irregular and im on the combined pill. yay for me it's always a surprise ninja attack from Mother Nature. It can really put a spanner in the works for me as I work abroad and Half my packing is pants and feminine items.

In the last year my sister got diagnosed with Polyps and the other sister had a cysts on her ovaries (not a great genetic set up for me then) so I turn 24 and get my first smear done in April, results came back as "Unusual" however I was out of the country till this month (sept) and was unable to do much about further testing.

Im due for an appointment next month to have further testing relating to the unusual findings in my smear test, but for the last 12 days I had horrendous abdominal and stomach pain, worse than I've ever had in recent years

(there was only one episode about 4 years ago where I was doubled over in pain and sent home from the hospital with the message of 'hot water bottle and paracetamol-yeah....thanks NHS.)

Anyway this time I spent my days going back and forth to the hospital. The first two days the four doctor/consultants I saw, believed it was early appendicitis. (bloods and urine clean and clear so no not appendicitis....)

The fifth surgical consultant I see on the Monday; then starts asking if this has ever happened around my period, I explain my history and family connections to this type of pain and he starts to wonder if it's Retrograde Bleeding.

He says to go home and see if it goes away with my period ending but that they'd call Friday and see how I was doing.

Cue Friday. Im still in pain and my period is on it's last day.

I go in to hospital as the receptionist I speak to says I have to readmit myself through A&E AGAIN to be seen.

I finally get to the ward, the fifth consultant I had seen wasn't in and I see a new sixth consultant who examines me and tells me that it's merely a pulled muscle. (okay....no)

Their only care was to give me the option of staying over the weekend and being dosed up on opioids to 'manage the pain' (im seriously not a fan of that and want to get to the bottom of the cause of this horrendous pain! Not just manage it!)

So I come home and my period ends, the pain has started easing up, Surprise surprise im starting to wonder if it is connected to the periods...

This pain came with constant bloating/swelling of my abdomen and stomach, a worrying lack of appetite (im a chef so I normally eat ALOT) I could barely stomach a piece of toast in a day

And of course the constant pain that felt as if someone were ripping my insides out with a spoon and no matter how I laid down (left or right) The pain moved with me.

....

So I guess i'm wondering, anyone else in the same boat? I've just started my journey to see whats causing my pain, is anyone else doing the same? or has done the same and can spare some advice for me?

<3 to all the ladies going through what you have, you're awesome. (and give me hope!)

3 Replies

Hi,

I am so sorry you are having to go through this! The NHS really need to take looking into and quickly diagnosing endo quicker and in a less dismissive manner.

My story is slightly different but I did have tests for cancer/cysts/STDs before they would even consider the posibility that I was right (as I basically sat in with my gp and refussed to leave until they got me a proper referral as I was adimmant it was most likely endo) and eventually they gave in and said it most likely was endo but that they wouldn't do the surgery as I was too young! (I think I was about 18/19 at the time) now at 23 after GPs palming me off and telling me that the one and only painkiller that no longer works for me is all they can give me (I am also on the pill and have tried a couple of different things they gave me like a blood thinner or something) I demanded to be reffered back to a gyne so I have that appoinment in a couple of weeks.

While I can't give you much advice as all I seem to be doing is fighting with doctors to take me seriously I would say try and tell them you want to be put through diagnosis for endo as it is affecting your wellbeing and health. I can sympathise with your long journey to get this resolved though!

Good luck with it all and i hope they do find the cause of all your pain xx

thanks Chrysta!

I appreciate your reply, its good to know someone else is fighting the GPS/Consultants too, there's not nearly enough of a focus on young women and the huge list of problems that their reproductive systems can cause!

Im heading home tomorrow and seeing a Doc on the 4th, hoping I can be referred to a Gyno if they understand the problems I've been having....

Good luck to you! I hope they come to their senses and do the surgery for you!

Have you considered going to another city with your medical file? (you can request to have it printed at your GP) maybe if they won't listen, you can make someone else listen!

x

I hadn't thought about going anywhere else but I do get private healthcare through work now which starts in October so if I get nowhere with this appointment I am going to see if I can go down the private route but I need to check they actually cover it...but thanks for suggesting trying somewhere else!

I think part of the problem is we both seem to be passed from one doctor to another when really we need someone to see this through start to finish but clearly that is too much as for 🙄

Hopefully we will both have some luck and finally get somewhere with this!x

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