I haven’t been officially diagnosed and I just get fobbed off all the time a gynaecologist said a few years ago that I probably have endo and that was the end of it. I asked my gp to refer me to gyno a while ago and she said no. She said that the meds I was on (cabergoline for my prolactin levels being high) made period pain worse. I told her that it’s always been bad. Im not taking that medication anymore and it’s still just as bad as it always has been. I’m 32 now I’ve been back and forth to the doctor more times than I can count. I’ve got co-codamol but it only just helps I’m still in pain and it makes me constipated and BMs are agony as it is. There’s another problem that I’m a survivor and really struggle getting to pelvic appointments. I haven’t had a smear in 7 years because of it. I don’t know what to do. I can’t live like this. I’ve got all the “classic” symptoms of endo and it’s just getting worse as time goes by.
Edited to add: also have tranexamic acid and can’t take the pill because I get ocular migraines. I tried progesterone only and had constant bleeding. I have mental health issues and find hormonal birth control isn’t good for my mental health. I also am on levothyroxine for my under-active thyroid.
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I’m so sorry to hear your doing through this. I’ve had a similar situation before and only just starting to really push my doctor’s for a laparoscopy surgery to diagnose endo. What I’ve learnt researching this is when you ask doctors and they refuse, ask them to make a note of it on your medical files that you have asked and they refused. This should show them you are serious, also look into changing doctors. Let your current doctor know you will be doing this.
Please also try and get for your smear, endo can’t be diagnosed this way but it will help with any other diagnosis you may need. I hope this helps and if you ever need to talk I’m here xxx
Hi, I would say to keep on trying different g.p’s until you get one who has some empathy and is willing to refer you. Some g.p’s have an appalling attitude and I know it’s very upsetting to be dismissed when you are genuinely suffering. My g.p refused to refer me and said my pain was due to stress and past trauma. I know this was because I had a history of anxiety and depression and she didn’t seem to be able to see past that. She put me off seeking further help for a while. I knew my pain and other symptoms were not stress related and I eventually spoke to another female g.p who not only believed me but was happy to refer. It turned out I did have endo and bowel adhesions. Please keep trying- you know your own body and you know when something isn’t right. Best of luck with it
Sorry to hear your going through all of this. It's lonely enough when your I'm chronic pain that isn't common knowledge. I've seen answers that say to go to your GP, and I would agree, keep making appointments, keep calling them, take yourself to A+E if you need to for stronger pain relief.
I am a surviver too. It makes these appointments very very difficult. Having someone you trust in the room with you to advocate for you, maybe sending an email to the secretary of the doctor you are seeing to inform them that these appointments are difficult for you, outline your boundaries and anxieties, ask for double appointments, ask them to talk through as many times as you need the procedure and what will happen so that there are absolutely no surprises. And remember you can ask them to stop at any time.
It's appalling that a GP should refuse you a referral as that is completely against guidelines. The best thing is for you to be aware of the guidelines that they should be following as this will give you more confidence going forward. Also as mentioned above always ensure that it is recorded on your medical record what you have asked for and ask them to record their justification for the refusal based on the guidelines they should be applying. Will pm you with more info on guidance etc.
Sorry to hear that you're struggling to get a diagnosis - it sounds like you've had a really hard time.
You may find information on our website about visiting your doctor useful at endometriosis-uk.org/visiti.... It also has a link to the pain and symptom diary.
If you need someone to talk to, we do have a network of support services that are available to anybody affected by endometriosis. Our free helpline is open most days and is run by volunteers who have personal experience of endometriosis (0808 808 2227). The times it is open can be found here: endometriosis-uk.oirg/helpline.
You may also find our face to face or online support groups useful. Please visit endometriosis-uk.org/find-a... to check if there's one in your area.
Wishing you all the best with securing a diagnosis from your GP.
I can sympathise as I had a very similar experience. I knew I had endo and no one believed me. I therefore took matters into my own hands, by researching the best endometriosis consultants in my area. When I found a suitable one I went back to the doctor and asked to be referred to him, as is my legal right. Since seeing this wonderful, understanding consultant I have had a laparoscopy and stage 3 endo confirmed. Please don’t give up. If I hadn’t basically diagnosed myself then I’d no doubt still be told it’s all in my head!
Use the econsult form on GP website, it keeps it all in writing and you get a copy. Tell them your symptoms and that you want a referral, don’t ask for one. It’s harder to ignore if you tell them and doesn’t give an opportunity to say no. Keep it polite, if they ignore ad brush off send another asking why. They won’t be able to without good justification.
I got so angry when they refused after fibroids showed on ultrasound, they hadn’t given any help for the previous year, they couldn’t do it quick enough and urgent. 🤣 don’t do that though, not good long term
I’m so sorry to hear all that you’ve been through. After years of going back and forth, I found it helpful to ask to see whichever GP had a special interest in women’s health at my practice. As soon as I did, first appointment “I think you have endometriosis, these are your options” even got referred after this appointment. Good luck with your journey, sending love and positivity x
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