I feel like I've been ignored all these years. Is it hard for a diagnosis for endometriosis?

[RT22]

Hi everyone.

First time posting... so I'll just get into it. I've suffered with pains for the past 3 years after my second child. Chronic stabbing pains in my left side below rib, chronic neck and shoulder pain. Painful intercourse during and after. Pelvic pains which cause walking very painful, painful bowel movements and painful period first day of my bleeding.

So I guess I'm asking do I have endometriosis? I have a doctors appointment on wednesday for tests and hopefully to look to booking my keyhole surgery.

I feel like I have been over looked from all of my pains. How did everyone else get the diagnosis, when they knew you had it. I feel like I've been ignored with all my symptoms.

Rianna xx

[Gemmaa96]

I found it a long process. My issues began at 15, but my only symptoms were severe period pain & irregular periods. I had scans, contraception, blood tests and everything came back fine. But we carried on fighting it, and after miscarriages etc I was put in for laparoscopy and was diagnosed at 19 years old. And since then it’s gotten so much worse! I’m no dr so can’t tell you if you do or don’t, but what I do know is it’ll only be picked up via surgery. It certainly sounds like somethings going on. But my main symptoms are flare ups, which are agonising. Irregular heavy periods, vary between 1 & 3 bleeds a month. Leg pain, pelvic pain, painful intercourses especially after in my lower belly xxxxx

[Lindle]

Is the shoulder pain on one or both sides and is it worse with periods?

[RT22 in reply to Lindle]

I had this in january they never knew the cause or even looked into it, but I couldnt move with the pain. It was in my right shoulder and neck.

[NH88]

Only way to find that out is through surgery, and surgery done by an endo specialist otherwise it could still be missed.

I suffered issues from the time of my periods at about 14...and only got diagnosed at 27. This is dispite my older sister having been diagnosed (also very late even though her symptoms were worse).

Gps dont have much info on this subject and are unwilling to seek further investigations. I actually had to go private in the end as I wS at the end of my tether.

Endo symptoms are hard to dissociate from other problems and as such the idea of endo sometimes doesnt even entre into a professionals head.

The average diagnosis for a person (and this is from the time they have a professional looking at the issues) is appropriately 7 years.

I would go see a specialist if you are in doubt.

Good luck

X

[RT22 in reply to NH88]

My usual doctors seemed to have not put things together, but because the nhs are now getting help from private doctors I was lucky enough to speak with one and he basically said on the phone I think you may be suffering with endometriosis. In a weird way I was so pleased the words came out of his mouth. I suppose it takes that one doctor to read my notes and see what I'm going through. I cant be in pain and them tell me they is nothing wrong. I hate that they havent looked further x

[NH88 in reply to RT22]

I know the feeling of relief that comes with knowing what it is that is causing you all the pain you suffered with.

Its a constant fight to be heard, but I agree wholeheartedly that noone should be in pai and suffer and be told that its nothing wrong.

You are on your way to getting the answers you need and the way forward that needs to be taken for your individual case.

Keep strong x

[Starfish123]

I do hope you get a diagnosis soon, my Endo wasn’t found until I was 52 after suffering for over 40 years. I was told every woman’s period is painful, and you don’t want to be messed about down there by Drs. Insist on a referral to a gynaecologist to investigate your symptoms. My Endo was only picked up because I had a op to remove cysts on my ovaries so they planned to remove cysts tubes and ovaries in case it was cancer. I was left with part of an ovary as it’s attached to the bowel. I was covered on one side with Endo but nothing on the other side. I now have residual pain which comes and goes but it’s no where near as bad as the period pain. I’ve had 3 ops in the last decade and they were far easier to deal with pain wise than my previous monthly periods.

Don’t be fobbed off.

[RT22 in reply to Starfish123]

Thank you for your reply. They found a small cyst with my miscarriage I had before my second child but they never looked into that just said it was normal to have them xx

[3caramel7]

It is 7 years around the world. Its not just an nhs or British problem. Endometriosis is a sneaky son of a gun, it can be found anywhere in the body, yes its even been found in the brain!It comes in different forms and it can even hide!When I suggested that my chest pain could possibly be caused by Endometriosis the Doctor did a double take!

It would be wrong of me to diagnose you since I am not a Doctor nor do I have a full history.

What I would say is everybody with Endo has a story. A main epic one. Backwards and forwards to the GP, A +E etc

What I would say is, if you decide to go private , make sure that he works in the NHS and that he has the right experience and is accredited. There are just as many nightmare stories when people have gone private!

You are not on your own. Help and support is here and out there. Unfortunately not enough R +D has been done . Im sure if men had this disease and suffered with the pain that we do, we would all be in a different place right now!