Awaiting diagnosis- my story

[rachel239]

For the last year and a half I've been struggling with bizarre and excruciating pelvic pain. I've been to A and E three times and each time they did urine tests and found nothing. They sent me packing with antibiotics each time.....and I belived them for a while.

My first doctors appointment about the pain, when I began to question the true origin of my pain, I was tested for chlamydia. I knew in my gut that it wast an sti. Since then I've been tested for every STI under the sun and all results have been negative.

My second appointment was with the registrar in my surgery. Shes fantastic and seems to really care. She referred me for an ultrasound, and found that I had an ovarian cyst that was 5x4.5 cm........they couldn't even see my ovary.

I also belived that for a while, blaming my pain on this 'random' cyst, which bizarrely disappeared 6-7 week later at my follow up scan.

After I while I knew that something still wasn't right. They changed my norethistrone to desogestrel and the pain only got worse. Then came my first gynae referral.

It was this gynaecologists first day on the job and I was her first patient. She was flustered and more than a little condescending. Nonetheless, I was examined internally for what feels like the millionth humiliating time. Her conclusion was that because I'm "at an age of being high risk to STIs" (21yrs) she was going to treat my symptoms like one. It wasn't until I finished my antibiotics and went back to my gp that I found out that she belived it was Pelvic Inflamitory Disease.

Still, my pain and other symptoms continued and I have been refered to gynae once more. A family friend who is also a gynaecologist says that the gynae I have been referred to isn't particularly good at her job.

I'm fed up. I'm pretty sure I have endo, but it seems that everyone I love doubts me and won't belive me until I have an official diagnosis.......a diagnosis which nobody seems to even think of. What if I go to this gynae appointment and go through the whole sti crap again and I'm still left in pain? What if family start to think I'm a hypochondriac? I have done so much research and my family are so dismissive sometimes I fristrates me. Why would I be so sure about a disease no one in their right mind would want to have?

I'm sorry to whine guys, I just have a lot of anxiety about my next appointment. X

[rachel239]

*appologies for my terrible typos

[Pinklady123]

Sorry to hear your suffering. Is the new gyne you have been referred to BSGE registered? If not, I would recommend going back to your GP and ask to be referred to a BSGE centre. Search for Lindle on here and have a look at her posts as she knows a lot about this.

I completely relate to how you feel about not having an official diagnosis, I was fobbed off by my doctors for a while saying I had IBS pains etc but I knew it wasn't that. I only felt like I got somewhere when I was referred to a BSGE registered gyne, he did an internal exam and could feel a nodule so suspected endo and then this was confirmed and removed during a lap 5 weeks ago.

I know it's hard but try and stay strong, I find this forum so helpful as its good to talk to people who know how you are feeling. I hope you get some answers soon xx

[rachel239 in reply to Pinklady123]

Thank you, I'll look for lindle. Sometimes I feel like I'm going crazy and is all in my head haha

[Simo7]

Ah Rachel, I think the hypochondriac feeling is common for most endometriosis sufferers! (They should list it as a symptom!) We're told so many times that it's PID or an STI or IBS & that gynaes cant find anything that we start to question ourselves. Don't. Pink lady's advice is spot on, new referral to BSGE centre. Oh & cysts can sometimes come & go. Keep a little diary of pain, where it is, when it happens & see if there's any relation to periods ovulation. Handy to have when you see a decent gynae' good luck xx