new member!

[freyatom]

Hi everyone,

I was hoping to get some insight. I think I may have been misdiagnosed with IBS instead of Endometriosis. I posted onto an IBS support group, asking if anyone else struggled with their period and couldnt walk or move when on. Most women responded saying this isnt normal & told me to look into Endo.

I booked an appointment & I'm going into the doctors on December 1st.

Do you guys have any advice for getting a diagnosis?

Ive been in and out of the doctors and A&E for almost 2 years now, so any help is greatly appreciated.

Thank you xx

[SeventeenNineteen]

Hi Freya welcome to the forum.

For your appointment December 1, it would be helpful if you could bring a record of your GP and A&E appointments for the past 2 years, very clearly written down in a list showing the date, and then the description of symptoms that you were admitted for.

The GPs will have this record of course, but its helpful for you to be able to show clearly the amount of times you have been seen, highlighting the symptoms you had each time. If you can track this to your cycle in any way-- maybe if you record it on an app or otherwise, it might be very helpful and show a pattern.

Unfortunately many really struggle getting a diagnosis, the average from symptoms to diagnosis can take years. When I was diagnosed it was emergency treatment. But the more prepared you are, and records you have in showing your symptoms, the more likely they will be to consider referring you on to a specialist to have a laproscopy, which is the most definite way to have a diagnosis.

Good luck and keep us updated on your progress.

[wonderlander]

I definitely think a clear overview of your symptoms, including at which point of your cycle you experience each one if you can, will be beneficial. Also make sure you’re clear about your symptoms and how much it affects your day to day life - that you can’t walk or move, if you often have to take time off work etc. Be prepared that it might not be straightforward and it may take some time to get to the bottom of it, but keep pushing through. Good luck

[TennisCourt]

Hi! I have also been told I have IBS but currently in the process of getting diagnosed for endometriosis, my surgery is due in December but it’s very very very likely I have Endo.

My “IBS” type symptoms are severe bloating, pelvic pain, frequent and loose bowel movements (1-4 times a day), but then I could have constipation the next day. I also get severe pain in my rectum, I get very painful bowel movements especially on my period.

I tried lots of diets and food just did not trigger my problems.

I also have always had herrendous periods that no doctor could ever explain. But no doctor linked my period problems with my IBS symptoms, which now I know is a sign of Endo.

I am so glad you are looking into this further. My advice is keep fighting. It’s a long journey for us all, I’ve suffered for 10 days but really pushed at the doctors for 2.5 years and it’s led me to have to go private for my surgery as I was getting no where personally on the NHS.

At your GP appointment, ask to be referred to gynaecology but please be aware that they are not Endo specialists and may dismiss your symptoms (this happened to me)

You no doubt will be sent for an ultrasound, mine was clear which can happen but doesn’t mean there isn’t anything wrong. The only 100% way of finding Endo is through laparoscopy surgery.

And if you feel frustrated with this process, what I did after 2 years was make an appointment with a private consultant who was a Endo specialist(look on the BSGE website to find yours) It cost me £170 but it was so worth it for me as it enabled me to finally have the validation, and finally have the next steps being the surgery. They can then put you back into the NHS for surgery.

Good luck and let me know if you need any more help❤️ happy to chat as you were me at the start of this year xxxx

[Ova104]

You poor thing you need endo specialist not just gynae. That happened to me diagnosed IBS after endoscopy colonoscopies over the years told nothing wrong and some even said oh probably food intolerances. Only found out endometriosis in 2015 after 44 years of being on the floor monthly trying to get pain relief with periods. Don't give up and be very firm and look up good gynae/endo specialist. Hugs

[Cocoacupid]

I would ask your gp to refer you to gynecologist team and push for it. Xx I did it’s only taken about twenty seven years of my life to get a proper diagnosis. Xx

[ccfd9]

Hi, there is an app from Cameron Nezhat in Atlanta which asks a number of questions and gives you a score. If your score is over 90 then there is a 95% chance you have endometriosis. This is not a diagnosis but you can use the results to show your GP and ask his advice as to what to do next. Is quite common for endo sufferers to be diagnosed with IBS. Good luck