Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

Any advice . . . UK based

Hi all,

I guess I’m here for some advice or just to know I’m not alone as I feel like I’m completely alone at the moment and either doctors don’t want to help me, or do want to help, but can’t!

Bit of back story . . . I have always had awful menstruation pain, resulting in me being prescribed the pill for the pain at the age of 12. This has got progressively worse since then. Ovulation pain entered the mix at about the age of 24. This has note developed it in a cycle of pretty much daily pain, which peaks and troughs throughout the month with my cycle. I’ve tried the combined pill, as well as the implant and also Tranexamix acid. I had a scare before Christmas as my C125 marker was elevated in some bloods. Luckily I was referred for immediate ultrasounds and these did not show anything malicious. My GP put in a gynae referral but the consultant will not see me until I have exhausted all other options so has said I need to try the coil.

Fast forward to today when I was booked to have this fitted at my local clinic, only to be told by the doctor that they are unable to fit this as they are only funded for this as a contraceptive and as my Husband has had a vasectomy, I do not qualify.

I completely broke down. I feel lost in this whole thing and I don’t know what else to do. I described all of my symptoms to the doctor today who said this is text book endometriosis, and my GP has also ‘off the record’ said this. I’m now waiting back to hear from my GP as to where I go now, and the doctor I wrote to today is also going to write a letter to my GP as this is clearly now having an impact on my mental health, as well as my day to day life.

I know this is so under diagnosed and am living through how difficult it is to get a diagnosis and I’m not really sure what I’m hoping for here, but figured reaching out to some ladies who have been through the same thing may help.

I’m sorry for the essay! Thank you for reading x

  1. - thank you for being here in this community. We are so saddened to read your struggles and what you are dealing with right now. I will say, you are absolutely not alone. So many can relate to this, including myself. Our stories are really similar. My period came when I was 11. I didn't get prescribed any sort of birth control until I was 15 though. I never found it to truly help with any of my pain or symptoms and even felt like it started to create even more pain and symptoms along the way. So I absolutely understand trying all different kinds and not seeing those results you were hoping.

    I know the must have bee a huge scare about the ca 125 marker. Last year I had it drawn twice and both times it was elevated. But my doctors were not concerned over it. After a lot of research, did you know that marker can actually be elevated in those with endometriosis! Definitely something to consider.

    Thankfully your ultrasound did not show any types of masses or anything though. I know that must have been a relief for sure.

    I have heard all sorts of things about the coil. Some find it to work, some find it not to work. I am sorry you are struggling being able to get fitted for it 🙁 the medical system is just so messed up.

    I am glad it does sound like you have some doctors already though that are willing to fight for you to get answers. Have you looked into Nancy's Nook? It is a FB group. She lists endometriosis specialists that you can search for in your area or surrounding area. Definitely worth looking into if you are struggling to get the appropriate answers or care. -- and if not that, maybe you can think about seeking another GYN out to see too.

    Keep on fighting warrior. You are not alone here. We are fighting with you. And truly hope you get the answers and help you need. Sending you all the hugs and good thoughts we can. Reach out to us anytime you need. And do keep us posted on how everything is going. XO -Kimberli (advocate)

    Please read our rules before posting.