Symptoms of confirmed endometriosis?!

[Lottie1234]

Hi there,

I was wondering what your symptoms were/are if you’ve had a confirmed diagnosis of endometriosis?

I’m having the following symptoms and I know it can be hard to get diagnosed/taken seriously but one doctor has said that my symptoms don’t fit with endometriosis and keeps pushing me to just get the Merina coil and not have a laparoscopy (I know the merina coil has been a life saver for people but I’ve been trying hard to improve symptoms as naturally as possible) but this just isn’t working.

My symptoms;

Sharp abdominal pains during period and when spotting inbetween.

Needing to urinate frequently, even when my bladder isn’t full and this is worse during periods. My bladder sometimes feels bruised as if I’d been holding urine for ages even when I haven’t. This has been on going and isn’t a urine infection.

Having diarrhoea before/after/during period when I’m otherwise really balanced and regular.

Pain/cramps during and after sex that I never had a year ago.

My sister has endometriosis which I know makes it more likely that I may have it too.

I don’t however have pain during bowel movements or have back pains or aches in my legs which I know are common symptoms and symptoms my sister had. My scans showed up clear but I know that can happen anyway and the blood test they use to sometimes identify it came back negative.

Could anyone share with me if they’ve had the same symptoms and whether they’d recommend the mirena coil as opposed to surgery too or whether I should do both? I realise my symptoms aren’t as severe as some so I’ve always dismissed my issues but it does interfere with my daily life.

[Goldencat]

Hey Lottie I would def push for a lap. Given your symptoms it makes sense to find out what is going on. You need a diagnosis and I would actually ask the GP what their rationale is for offering you the coil - if it’s to help regulate heavy periods fair enough but if you don’t have heavy periods it sounds they're thinking along the non surgical line of managing suspected endo - and if that is the case, they should really offer you a lap to provide a definitive diagnosis. Pain after sex is not normal and often a symptom of endo (excluding PID) and needs to be investigated. I would go back to the GP and take a symptoms diary with you and request a laparoscopy. I had gps telling me I couldn’t have endo because My pain wasn’t limited to only my periods, or didn’t get worse during my periods. I had another GP tell me my pain was most likely muscular and I was probably having too much rough sex (!) After a lot of pushing I got my lap and they found extensive endo. At the end of the day you know your body best and deserve to have this investigated properly. If you get through to having a lap make sure you discuss with the consultant to have excision performed (where they remove the affected tissue) as opposed to ablation (where they burn the endo) as it is proven to be much more effective at treating endo. Good luck x

[Lottie1234 in reply to Goldencat]

Thanks for the advice! I’m actually on the waiting list for a lap now but the doctor was reluctant as she’d previously told me to try the coil for 6mths and then come back if I still had symptoms so I’m still in two minds as to whether I should have surgery. I do know that she said they would remove any scar tissue through ablation though, so I’m not sure how possible it is to ask for the other method but I will enquire. So sorry you’re not feeling the benefit post surgery, really hope you find a solution soon.

The other issue with having the coil is that my partner and I are deciding when to try for a baby and considering trying in the next year, I still don’t have a date for my surgery and don’t see much point in having the coil for less than a year.

[Goldencat]

Also to add, I had a lap with excision and the mirena coil fitted. I’ve had no problems with the mirena coil - it’s lovely to not have to remember to take the pill and also I like not having my period - not that it was really bothersome before! 2 months post surgery I don’t really feel like my symptoms are improved... - still unable to have sex and in daily pain so waiting for my f/u appt with the consultant to see what to do next.

[Jesska]

Hello hun

I have endometriosis and I have had all of those symptoms. You need to have an ultrasound and have it done on your pelvic wall. Don't loose hope some medical staff will take you seriously. Hope you get it sorted asap. X