Struggling…

[Billiejay18]

I haven’t been diagnosed with Endo but I’m almost certain it is the cause of all the problems I’m having.

I’ve been having problems for 19 years (since I was 13). I’ve had numerous scans, X-rays, internal examinations, tried multiple pain killers and pills and been hospitalised with pain, vomiting and dehydration on multiple occasions but I am still struggling to get a dr to consider endo as a possibility for some reason.

The following maybe TMI! I can’t leave the house when I’m on my period because I have to change my sanitary wear at least every hour otherwise I leak, the pain is unbearable and painkillers (naproxen, codeine, mefanamic acid) don’t touch it at all and I can barely get out of bed. I pass clots the size of plums, I have trouble with my bowels and bladder, I get migraines. My periods either come every week or not at all for months. I bleed for anything between 7 days and 30 days. At one point I bled for 83 days continuously. I freeze if partner tried to initiate any intimacy because it’s too painful for me.

My life is being ruled by this - my work is affected, my social life and my relationship is on the rocks because as understanding as my GF is, there is apparently a limit to her compassion.

Sorry to vent, I just don’t know how to proceed now to get help. My mental health is in my boots.

[Moon_maiden]

Hi

You’ve summed up symptoms pretty well and your GP needs to refer you for MRI and to gynaecologist.

I’d suggest filling in the econsult on GP website, keeps it in writing, copy and paste as much as you can re symptoms. Tell them what referrals you want, don’t ask, it gives the opportunity to say no. By telling if they don’t it easily becomes lack of care. Keep it polite but firm. It’s not easy but we have to get persistent.

Also with referrals ask for private hospitals to be added to choose and book and ask for the login in info. This way you can go online and look at appointment times, often private is quicker (still under NHS) and you’d get the consultant, not a registrar, and treatment there. Much nicer. Alternatively if you can afford it pay for a consultation and pick a consultant who does both private and NHS and they can switch you to their NHS list. The GP is unlikely to refuse referral if a consultant agrees with you. That way you get to pick the consultant as you don’t need a referral for that and you’d see one within a couple of weeks. You can make sure they specialise in Endo as well.

Sorry I’ve wittered on a bit, I hope it helps 🙂 please do ask if you have any queries

[Moon_maiden]

Don’t let anyone say it’s all anxiety, it’s a cop out and Drs have too much of a habit of this, you have real symptoms 🙂

[Dee_EndoUK Moderator Endometriosis UK]

Hi Billiejay18

Sorry to hear you're having such a tough time of it. Endometriosis can certainly cause the symptoms you describe, so I'm not sure why a doctor wouldn't consider this a possibility. Have you had an MRI (carried out by a highly skilled sonographer who would be able to identify DIE)? If not, this would be worth discussing with your gynaecologist.

As an aside, do you have your iron levels tested regularly? If not, it's definitely something that your doctor should carry out for you. Many women who experience heavy/flooding periods are deficient in iron and this could be a contributory factor in your migraines.

Along with our forum we also have an online support group that you may like to join, where you can discuss your symptoms and the difficulties you are having with other endometriosis sufferers. You can find the details for this here: endometriosis-uk.org/find-a...

Take care - I know it's hard when you constantly have to advocate for yourself to medical professionals, but we're all here to support you x

[Billiejay18 in reply to Dee_EndoUK]

Thanks for the response.

I’ve only had internal CT scans - never an MRI. I’ll certainly ask the doctor about it at my next appointment.

I have general blood tests once or twice a year but not regularly to test my iron.

Thank you x