Help with diagnosis

Hi all, I'm just looking for a bit of advise from anyone that may have had difficulty gaining a diagnosis of endo (I think there may be a few from what I've read!) - sorry in advance for the long post!

I have been back and forth to doc and gynaecologist for years and still not really any further forward. My mum has endo and everyone I have spoken to about my symptoms have said they think I do too, but I haven't gained a diagnosis at all.

I've always had painful periods, but they just got worse over the years. I was put on the pill when I was 15 but that just didn't agree with me so was put on mefanamic acid (ponstan) to help with the pain but ot didn't do a lot. When I was 19 I think had the mirena coil inserted and when things got worse I was was sent for a laparoscopy but this was inconclusive. I've since been put in cerezette pill (still have coil in). Any scans I've had haven't shown up anything and now I'm almost 25 I'm still no further forward.

I am constantly tired, my sleeping isn't great (wake up most nights at least once and can't always get back to sleep straight away), any time I do exercise I get severe abdominal pain. Any abdominal pain goes through to my back and sometimes down my groin / thighs.

Getting really frustrated and just looking for any advice?

Thanks!

4 Replies

oldestnewest
  • Hi!

    Sorry to hear you're having such a tough time getting a diagnosis. I know how hard it can be to get diagnosed- on average it takes 7.5 years for a woman to get a endometriosis diagnosis! I was dismissed for years before anyone took me seriously. There's also a link between people who's relatives also suffer from endometriosis- so it could be likely that it is endometriosis or it could also maybe be an issue with your ovaries/ polycyclic ovarian syndrome or polycyclic ovaries- a lot of menstrual conditions share the same type of symptoms which is why it's so hard to find out what's going on most of the time.

    I would say that you should always trust your body and if you don't feel right- definitely push to get some answers from your gp or your gynecologist if you have one. Maybe it's worth asking to be referred for an ultrasound or for another laparoscopy? It is possible for endometriosis to be missed during a laparoscopy if the endometrial tissues are hidden or deeper into the tissue. I really would suggest writing down all your symptoms and going to your doctor with a list and demand to either be referred or to have some sort of investigation started, at least that way you can rule out endometriosis and put your mind at rest.

    I put a post up a while ago about my story in general getting diagnosed and the issues I had leading up to getting diagnosed that you may relate to or might help in some way.

    You deserve to know what's going on so don't be afraid to push to get help and answers!

    Hope you manage to get some help.

    Love Jordan

    X

  • Thanks so much! It's such a pain and by reading more about it I can see that most people spends years fighting for a proper diagnosis. Going to make an appointment for the docs next week so fingers crossed!

    Xx

  • Hi,

    So sorry to hear you still don't have a diagnosis. I am going to have a laparoscopy soon so I haven't been confirmed yet, but it was a long fight for me too to even get this far.

    A friend with endo told me that she did some blood tests before surgery, apparently some forms of endometriosis can be found in this way. Maybe try ask your gynaecologist about it?

    Also, one advice that really helped me was to go see an expert in Gynaecological Endoscopy, since not all gynaecologists have been trained in this kind of issues. I have finally seen one and he found what was wrong with me in 10 minutes, no kidding. I have experienced the same pain at the lower abdomen when exercising, but in my case he said it had to do with blood pressure.

    I hope you'll get better soon, don't stop looking into it!

  • Thanks! Definitely going to try and get more answers from the doctors. Appreciate the response :) xx

You may also like...