possible endo, need advice!

[libsxx]

so firstly im 17 and basically i’ve had the worse periods since i started at about 12 and ive always had excruciating pain, heavy bleeding, sharp stabbing pains, i was put on a pill when i was about 14 and it just made me feel horrible all the time and the pain didn’t go away, so i come off it after about 6 months and just figured i would try to find a painkiller that made it manageable.

about 4 months ago i rung my GP, because i just couldn’t take the pain, it was unbearable, one time i had to leave work because i was in the worst pain and my work colleagues even said i looked really pale, and i felt light headed and sick, so anyways my GP put me on another pill although after 4 months it was not different from the first one, they also referred me to a gynaecologist a few months ago, so i got an appointment went in, they done a swab, and asked about my symptoms...i told her and i said ‘i could be wrong but i think i might have something going on that is causing the pain because its not normal’ and mentioned that i thought it could be endo, anyways i had an ultrasound but the woman who done it said she couldn’t see anything abnormal, i’ve been told by the receptionist at my gp, who has endometriosis to keep pushing for more tests and especially laparoscopy as its the only certain way of knowing, ive also been getting pain during sex and after my lower stomach hurts.

has anyone got any advice on any thing that may be able to help with pain or just general advice?

thankyou so much xx

[Cailleach]

The receptionist at your GP is right about the laparoscopy as being the best way of diagnosing endo. However it seems to be usual for people to be referred for ultrasound first. Endo very often doesn’ t show up there though.

I suspect at the moment waiting lists for laparoscopy are quite long. Often they will also do excision ie removal of endo deposits if they find them at the same time. Presumably your gynae is going to see you again? If not you need to be rereferred - maybe ask for a gynae who specialises in endo.

GPs can prescribe quite a range of painkillers but often need to be pushed beyond co-codamol. If whatever you are using is it working then they need to try something stronger.

Pain during sex is a common symptom of endo. Sometimes trying a position with less deep penetration can help.

I hope things improve for you.

[Greensea]

18 yr old here, I’m in the same boat as you. I’ve had several ultrasounds and they didn’t see anything each time. Even the person doing it said they probably wouldn’t since the whole point of endometriosis is that’s it’s Not In Your Uterus. I would keep pushing for sure and make sure they’re aware that you’re not going to settle for being brushed off or told you have IBS (I got that diagnosis too). There’s plenty of women who I’m sure share the experience of not feeling like they’re being taken seriously by doctors. They’re there to help you, so make sure they take you seriously and know what kind of pain you’re in. You’re definitely not alone in this experience.

[Hidden]

Push for a referral to an endo specialist centre, you definitely have all the main symptoms. I first had symptoms at 15/16 and it took 18 years to diagnose (multiple emergency hospital admissions, so many scans I lost count). There is some evidence that really wide spread endo can be picked up by specialists with ultrasound, but it’s going to be a laparoscopy to properly diagnose. You need to be on a treatment plan ASAP to prevent damage (will likely be hormone therapy at your age). Don’t be scared to push for what you need and if you don’t feel listened to take your research with you to appointments and maybe take a family member/friend for support. It’s your body, you know something isn’t right and you deserve to be listened to.