I am sure I have endometriosis, but docto... - Endometriosis UK

Endometriosis UK

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I am sure I have endometriosis, but doctors wont help!

carldahr profile image

I started my periods when I was 10 years old, and I always dreaded that time of the month due to having “bad periods”. I was put on the pill soon after this and I was told this would help settle them as will help “level my hormones”. From then i was put on what feels like every kind of contraceptive pill and brand out there, as non of them seemed to be helping at all.

After doing this for 8years, my periods continued to get worse to the point I was going through my monthly cycle every 2weeks!

Just before my 19th Birthday I went to the doctors about this and they said to lay off the contraceptive pill as due to being on them for so long my body could be having like an “adverse effect” to them and “playing with my hormones too much“ and this could be why I was getting my periods every two weeks and getting severe agonising pain.

The doctor suggested after a few weeks I have the Mirena Coil fitted and this would stop my periods and the pain. But it didn’t.

Okay, my periods stopped but the pain just continued to get worse and worse.

Since July 2016 I have visited A&E, OOH Doctors, and my GP over 100 times. I’ve had numerous Ultrasounds, Swabs, Blood Tests, and CT Scans which all come back “normal” and sent home. I’ve also been miss-diagnosed along this long journey a number of times with IBS, Gastro Diseases, and ectopic pregnancies!!

My symptoms progressively got worse and more aggressive, getting severe pain every single day. Pain killers wouldn’t even touch the sides, I even started spotting when the pains were at their worst.

I continued having regular visits with my usual GP and A&E and finally, I started to get some answers, where three A&E doctors suggested it could potentially be Endometriosis. Which I had been asking if it could be this since 2016. But they said I would have to go back to my GP to be referred.

I had my first Gynecologist appointment on the 12th July 2018 where she confirmed that they are 95% sure it’s Endometriosis and referred me to have a laparoscopic procedure to confirm the condition with +/- treatment of Endo.

I went in for surgery on the 6th September 2018. Before going down I met the surgeon who seemed to have a pre-conception that if I had the Marina Coil fitted then they wouldn't find Endometriosis but went a head with the surgery anyway. After coming round for the operation, the nurses and surgeon turned around and said positively 'we didn't find anything, you don't have Endometriosis' and I just burst out crying as, after all this time I just wanted answers as to what has been causing this pain.

After my surgery straight away I booked in an appointment with my GP to find out the next steps but I got far from that. In fact, I felt backed in a corner about taking anti-depressants for relief from chronic pain and a reply saying 'I am unsure of the next steps, what do you think?' and of course I'm not a Doctor, how am I supposed to know?!

He has currently written a letter to the team who carried out the surgery to see if they have any suggestions but its been a month and nothing!

Anyone got any suggestions or advise for me, I need all I can get!?

1 Reply

oh my goodness you poor thing .there is nothing worse that having no diagnosis .a laparocsopy is the only way to tell if there is endometriosis .i had a few gynaecologists .before i got diagnoses.as i keep saying .we all need to find a good gynae that is trained in this condition many are not so dont diagnose it .the other thing i had as well as endo was when i finally had a hysterectomy .he found that i had ademiosis.not sure thats spelt right .that is a condition where the lining inbeds in the womb .that is very painfull too .aparently to get a diagmosis of this they have to look inside your womb.hope this helps let me know if you get any answers

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