Undiagnosed Endometriosis

[emmatowny]

I have been suffering with painful periods, painful bowel movements on periods and painful sex for years. Had my lap last August and they found nothing, but my surgeon came across unexperienced with Endo as she said half of my symptoms aren’t Endo related when my research and former endo suffers told me they were. Came off the pill and the first two months were amazing, but now i’m suffering more than i ever have before. Doctor has recently diagnosed me with a severely retroverted uterus however it never has been this way before (or nobody has mentioned to me), my period pains are unbearable to the point of fainting especially with bowel movements. Its all in my back and i have sharp shooting pains up my bottom. Sex is agonising, like someone is stabbing me in my belly button. I’m ridiculously heavy and i’m constantly exhausted. I’m being referred to an Endometriosis specialist at The Birmingham Womens hospital but this was over a month ago and still no appointment. I’m slowly giving up and i have no idea who to turn to. I’ve already been accused by my doctor that its all in my head. I’m actually starting to think that maybe its not Endometriosis. Just wondering if anyone has any advice or can suggest me on what to do?

[Thecraftyadder]

I would keep pushing to see an endometriosis specialist. I went undiagnosed for 18 years and had a laparoscopy where it was missed. It wasn't till I saw an endometriosis specialist that I heard the words 'your symptoms all sound very familiar' it was such a relief! I had excision surgery last year. General gynae docs told me it was ibs, my age, everyone gets period pain etc. but it was deep infiltrating endometriosis. Don't give up yet! A specialist is the way to go and if your GP is not being supportive then change them.

[emmatowny in reply to Thecraftyadder]

Yup my general gynae doctor said it was IBS and bowel issues that need investigating. That is really reassuring thank you! I will keep pushing for my referral and just keep trying. Its just so deflating when i’m going round and round in circles!

[Liaaar]

Hi I’m Lia, I’m 19 years old, I can sympathise with your pain and heart ache, as I am suffering like you. It’s the worst experience of pain I’ve ever had, the agonising constant pain, the swelling, and the devastation of the doctors who have failed me and have made me feel as if it was all in my head. It’s taken me 2 years, 3 emergency operations as my ovaries grew lemon sized cysts that ruptured and bled internally before they took me seriously. I was finally diagnosed with endometriosis December last year. They keep draining my cysts away but they keep coming back, they come back very quickly. I feel sometimes life is unbearable. Isn’t it a shame that we really have to stand our ground to make the doctors believe us. Yes some of us are young but we know our own body’s, i truly feel sorry for everyone that suffer with endometriosis. Doctors are good diagnosing what they can see such as broken bones ext but they are crap at diagnosing things that are internal. Because they can’t visibly see it they don’t diagnose it.. I’m obviously no doctor but from experience of endometriosis I definitely think you have Endo and I definitely think you need to keep fighting, I’m 100% certain you are suffering from Endo, you are suffering from the same symptoms I go through on a daily basis. If you ever need to talk here’s my Instagram: lia.robertss. I hope it gets better for you sweet💕

[emmatowny in reply to Liaaar]

Hi lovely! I’ve requested to add you on instagram!! Thats awful! I’m so sorry you go through all of that on a daily basis. Its such an awful thing! I honestly broke down to my doctor when she said she thinks i have Chronic Pain Disorder and that its all psychological. I don’t understand how i can have a Lap and they not find anything, i feel like my symptoms are 10 times worse after i had my Lap. Most days i’m ok but some days i have massive flare ups and i have really bad pelvic pain, feels like its deep in my bowels. My periods are unbearable but the most painful thing for me is intercourse, it honestly makes me sob so much its agonising! I’ve been waiting on this referral for month and i just don’t think i can wait any longer. Thank you sweet❤️

[Liaaar in reply to emmatowny]

Hey lovely, I’m also very sorry you’re going through all this, honestly it’s hell! Like I said I definitely think you have endometriosis! I’ve been treated the same as you, before i got diagnosed, I was treated so badly, it got to a point where I was actually laughed at, they would always say I’m way too young to have ovarian cysts and just rubbish like that, it would be like that every time I went down to the hospital. My gynaecologist who diagnosed me is very cotradictive, she’s always swapping and changing her mind and it infuriates me. Although I have been diagnosed with endometriosis she’s now saying that the back pain that I keep getting that comes with my pelvic pain is neurological pain which is absolute rubbish, I know that it’s also related to my endometriosis. I too feel so defeated, all I want is someone to actually listen to me and to take me seriously but no one will, it’s a battle every day, although I have been diagnosed I’m still not getting the right help. She has put me on two conctractaptive pills which was to stop everything, but it’s done nothing, I’m still in so much agony and the ovarian cysts are still growing back and rupturing. I’m honestly at my wits end I’m not sure what else to do, but I’m still going to fight for help and so should you sweet! It’s not fair that all of us girls who are going through this don’t get the help we need. We need to continue fighting and make our doctors listen!💕

[emmatowny in reply to Liaaar]

Sorry for the late reply i’ve been at work and things!! Its so awful that there’s not enough research into Endo😢 Doctors clearly don’t know anything about it and just put it down to psychological pain or IBS, its disgusting really that we all have to suffer because of it. I’m so sorry you feel this way and what you’re going through! Yes i agree!! I think the best thing for us to do is keep fighting for answers even though we are both so defeated! I hope you are pain-free soon💘 i will message you on instagram with any updates from my referral, thats if it actually comes through...