Endometriosis UK

Looking for some support awaiting diagnosis

Hi Ladies.

I'm completely new to this site but I've seen all the lovely responses you give. If it's okay, can I have a little moan and hopefully hear some of your stories?

I'm currently waiting for an ultrasound. About 2 months ago I had bleeding after intercourse. It had happened before but the tiniest amount. This time however was really really heavy, cramps like a period. I was really shocked by it. It lasted 5 days and I had only finished my period the week before. I went to the walk in centre and was referred the sexual health clinic where I was treated with very little respect. I had an internal examination and because I had extreme pelvic pain I was told I had pelvic inflammatory disease and that I had caught this sexually (the doctor gave me false information and made me feel really humiliated). I refused to believe what he said as I've always checked regularly, and when the results came back from my STI tests etc they were all negative. I took the antibiotics anyway and surprisingly they didn't work, the pain was still strong.

I was tempted to ignore the pain and put the blame on my pill (I've been on Cerelle for 4 months so maybe I was getting used to this?) However it was the week before my period and the pain and cramps were worse so I saw my GP. Luckily, I have a fab relationship with my GP, and he really listens to me. I explained everything and he asked me some more questions. I had been diagnosed with IBS earlier in the year but after chatting I made the connection that it's always worse around my period. At the moment I have pain when my bladder is full and I'm having horrible problems with my bowels. my pelvic pain at the moment has calmed apart from constant pain on my left side and back pain. It's been hard working out certain symptoms because I also have psoriatic arthritis. My doctor mentioned Endometriosis straight away. Sex gets painful but I had just put it down to other things, Before I went onto cerelle i had a bit of a break and my periods were horrendous, i also had a really strong metallic taste in my mouth which i have had this month for the first time since going onto Cerelle. Apart from this break I have been on Cerazette and briefly yasmin so the doc thinks this could have masked things. Also when I came off cerazette I bled for 7 weeks and became anaemic.

I really hope that my GP pushes this, because from what I've read an ultrasound usually doesn't show much? Has anyone else had problems with diagnosis or has it ended up being something else entirely? Sorry to have gone on but I'm feeling pretty lost...

2 Replies

Hi there! Don't apologize for going on about an issue that is obviously very bothersome. Majority of us have had trouble getting as diagnosis! But I can fortunately give you some tips to make it easier and quicker to get yours. Here's my story, I will attempt to make it shortish lol! I began with heavy periods, painful cramps during ovulation, my period and a week after which gradually turned into a 24/7 pain in my lower abdomen and pelvic, usually on the right side was worst but dont get me wrong, this was all over, I had pain after sex also. All these delibating symptoms and it took 3 years of doctors visits almost every week for my diagnosis. Many ultrasounds, CT scans, FNA's (fine needle aspiration), biopsies, endoscopies, X-rays, blood tests, all kinds of tests! I went in to the doctors one day with the same pain and he immedietly called an ambulance assuming I had appendicitis so I went in for a laparoscopy 6 hours after more tests sitting in a hospital bed, they took out my appendix and that was that, I did not have appendicitis nor anything wrong with it. They found dried up blood on both ovaries implying I had a burst ovarian cyst. I had an adhesion that had stuck my bowel to my right ovary but had no previous surgery which was odd to them but little did I know endometriosis causes adhesiosns but I did not get my diagnosis from this operation. Turns out you need a gynecologist that specializes in Endometriosis to assist in the surgery. So second operation here I go with a specialist with me by my side looking for what general suggestions can not diagnose let alone see. Diagnosis was confirmrd, hallelujah! Find out if there is an Endometriosis specialist in your area and have him assist in your operation and do not go under the knife without one, I did, and it was for nothing. Good luck and I wish you all the best!


Hi Meganfaithfull,

I really appreciate the reply. Thanks for the advice, it's really helpful. I'm used to having to push and push, it took me along time for my diagnosis of arthritis so I guess I should prepare for more hounding. I have done some research and found out that the hospital I am having my ultrasound at has an endo specialist that has ALOT of praise on here so I am thankful to know there are a few in my area. I just hope the wait isn't too long, my symptoms are worse today :(

Thanks again, and I hope you are doing well now xx


You may also like...