9 years later! - still at a loss.

[grey9]

Hi everyone!

Kind of new here so this may be a long one, but here goes.

Starting at 13 with the vomiting and fainting whenever I had my period I was put onto the pill to stop my periods and have been on it ever since. I am now 21, and suffering with severe irregular bleeding (4 weeks non-stop) and severe pain also. The doctors give painkillers for many years I felt completely un-listened to. It took me becoming severely unwell to get sent for an ultrasound from my doctor where I was diagnosed with polycystic ovaries. After I was diagnosed, that was it, no help, advice, support, nothing.

3 years later, still suffering the same, not being listened to. I am waiting a diagnostic laparoscopy for suspected endometriosis - that has been scheduled at the exact same time as my final exams at university... great!

I had another hospital appointment on Monday with a new consultant, she was dismissive, rude and did not listen to me, saying I should try the coil and cancel my operation.

Completely at a loss, feeling like nobody understands and nobody listens to me after 9 years of suffering...

Can anybody relate to this? I just want to know what is wrong with me!

Thank you xx

[Cupcake1617]

I can relate to this so much. Sorry to hear you’re having a nightmare with it all too. I’d say listen to your body and go with your gut feeling and fight all the way - as that’s what it seems to take! I kept a pain and period diary which I took to every hospital appointment and it’s always very useful.

As for the uni timing, I had a similar clash and university were good and understanding. So if the date can’t be around your exams, speak to them and see what the uni can do x

[grey9 in reply to Cupcake1617]

Thank you so much. I plan of fighting until I'm listened to!

Glad to hear everything went ok with your uni around your operation time, thank you for your advice! x

[applebird]

Hi, is your lap booked with an endo specialist at endo centre?

bsge.org.uk/centre/

Trust me have been there it has been very disruptive to my life, prior to diagnosis at 24 I bled for a full year non-stop - you do need a lap (make sure it is excision surgery by specialist - generally they will do a diagnostic, have a look around and then schedule you for whatever you need at a later point when they know what they are dealing with)

You can ask to shift your date if it clashes with exams or alternatively have the surgery and then do resits in August. However you might still be quite unwell in recovery until July so maybe better to get them out of the way.

This is a really stressful year for you so remember to take time for yourself. Whenever I am stressed I tend to bleed a lot even if not my period so this could be what's happening for you.

Take care x

[grey9 in reply to applebird]

Where I am for uni is in the middle of nowhere so there is nothing like that around, I'm just booked in at the hospital here with gynaecologist. I am now looking to go home to get the surgery as we have a few endo specialists there.

Sounds awful for you, hope you managed to get sorted/some resolution? X

Ditto, any form of stress at all my body reacts massively!

Thank you so much for your advice x

[applebird in reply to grey9]

Nps at all. Going home for surgery sounds like a good plan.

I got my diagnosis 3 weeks before starting a uni course at 25 when finally got surgery. I've had to take 4 years out overall (3 medical for major surgeries, and 1 for maternity when we were told to hurry and have a baby when I was 29), now part time for my final year as endo has come back which has added another year on and I'm now 33!

Still fighting for my resolution, I have quite an aggressive endo and concurrent adenomyosis. I think hysterectomy probably best answer for me, but hoping for a sibling for my little boy. Very blessed with him.

Everything will work out and you will find treatments, lifestyle changes that work best for you. It sounds like you are doing really well dealing with it. For me surgery has generally only benefitted up to 2 yrs after, but for some it can be 5-10 years or lifetime. Everyone is different - focus on you and getting better xx