What now?

[JujuB77]

So I finally had my gynae apt yesterday. I have had pain in my left pelvic area for more than 2 years now, this pain takes on a new level during my period. I say period but since being on the mirena coil my bleeding is sporadic bleeding for 14 days a month on and off. So gastroenterology felt that I may have endometriosis and not IBS. I had an ultrasound in August 2020 nothing apart from bulky uterus. My ca125 levels were high but then they reduced after getting the coil fitted. Ive had a CT scan - no further action. Yesterday I had an internal everything fine apparently. I said what about endometriosis, she said I dont think its that then 2 minutes later gave me a leaflet for the Prostap injection titled "for endometriosis" and said I could try this??!! I actually left the hospital in tears. Waiting so long for every appointment and not getting any answers. Im thinking of getting the coil removed now as my periods have gone from 4 days super heavy to 14 random days a month small bleeds and it is not helping the pain which is the main issue so see no point on having it. My mental health is so poor just now Im really embarrased about getting so upset in the hospital yesterday and I dont know what to do next. Im in limbo, always "no further action" but Im still suffering and no answers.

[MidlifeMe]

I completely hear your hurt from the 'no further action' repeat. This is so hard to bear. I'm not sure I have any useful advice on how to follow up specifically, but you are absolutely valid and entitled to keep pushing to find out what's going on. I understand your embarrassment as I cried in hospital yesterday too. But - your upset is completely real and justified. Suffering with no answers is hard, and being made to feel like your pain and your emotions aren't justified is not ok. Take some time to look after yourself and keep asking for help.

[bluebug]

You could have adenomyosis as you have a bulky uterus.

Your GP may but the consultant definitely should have explained that you probably have this. Unfortunately adenomyosis is poorly understood and some of the available treatments e.g. mirena coil are the same as for endometriosis. If you look on the NHS website adenomyosis is only mentioned under hysterectomy and no where else. There as endometriosis (now) has it's own page. (There is more information on these pages then on the NHS site.)

The fact the consultant couldn't be bothered to say what your bulky uterus was likely to be is shocking. I'm not surprised you got upset after being left in pain with the specialist unwilling to say what your condition could likely be.

I would be inclined to put in a complaint to PALs that you were offered treatment for endometriosis after being told you hadn't got it. You may get an answer after doing this.

Oh and there are other more invasive treatments e.g. endometrial ablation, hysterectomy but if you are 45 it is likely the gynecologist will think you will be in menopause soon so why bother discussing them with you. Some of the most ignorant attitudes about female fertility and menopause I've seen have come from female health professionals.

[Crazycatladyjones]

Sorry you had a rough time! Did she not offer or mention a laproscopy? So has she discharged you now or have you got a follownup? I would push for lap. Spmething is causong pain and yes maybe hormonal treatments will help symptoms but its not getting to the bottom of what is causing it! Read this too many times women getting fobbed off with differnt hormonal treamtents and pain killers when theyre should be further investigations. X hope you get sorted take care xxxx

[JujuB77]

Thanks everyone I appreciate you all taking the time to reply I am so confused about it all. My GP is useless, gynae have written me off and Im in limbo. Still have the pain but no answers. GP offered me amytriptaline but that is just going to mask whatevers wrong and isnt getting to the bottom of it. Gynae also said about my lifestyle choices (ive put on a considerable amount of weight) although I do 10k steps a day so not inactive! Obv blaming my weight for my pain but surely if this was the case I would have pain on my right side too and not just my left side?? I just need someone to actually understand.