struggling - waiting to hear back from gynae

[eloisejm]

Hi all, I hope you’re all doing ok.

I have finally after 2.5 years had a referral to gynaecology, which I had to fight really hard for after having my symptoms played off time and time again as IBS and other things. I really struggle with back/abdo/groin pain and have urinary and bowel issues. I’ve also been referred for a CT on my KUB to rule out any issues there, but I’m just so worried that I will still gain no answers and that gynae will turn me away (I’ve been told this is a possibility).

I fear my symptoms, namely the pain, aren’t bad enough to be endo, but then I question whether I’ve just been conditioned to believe that by the numerous professionals who have stated it’s unlikely for me as my period pain isn’t always “severe” (me counting severe as 10/10 pain). I do know that the symptoms vary from person to person and that everyone’s pain threshold is different (my pain does limit my activities), but it’s hard not to feel like you’re overthinking things when many professionals simply ignore your countless pleas for help. For around 2/3 weeks a month my symptoms are “flaring” - still being present the rest of the month just more tolerably - worse around my period, and I have lots of the endo symptoms (I think all but one listed on Endometriosis UK’s website). I also suffer with OCD which doesn’t help as this condition flares during my period. I feel at a loss. I don’t know how much longer I can cope with my physical symptoms without any help or support. I’m on other medication which prevents me from taking NSAIDs and I just feel stuck.

Has anyone else been through this and if so, is there anything you recommend to help with the feelings of hopelessness and like the road ahead is so incredibly long and uncertain (and painful)? Is there anything you recommend saying/doing to help the doctors/gynae understand and truly hear you and see your symptoms for what they are? Any advice would be much appreciated.

TIA

[MrsPaddingtonBear]

Hi

I’m sad to hear you aren’t being taken seriously. Sadly this is all too common. I keep a diary of symptoms and make a chart. I take this to my hospital appointments. My consultant groans every time the dreaded paperwork comes out lol! But it works, it shows exactly when you are getting symptoms and shows patterns etc. My latest chart shows me bleeding for all but about 3 was max in 7 months. This is despite Zoladex and then Prostap treatments for 17 months. He was shocked at how bad it was. He agreed a hysterectomy this week and papers were signed. I had to be firm and make him look at the chart. Try that maybe, it may help with a diagnosis or at least a plan of action? Hope that helps. Good luck.

[eloisejm in reply to MrsPaddingtonBear]

Thank you so much for replying! I’m so sorry to hear you get such a poor response to bringing the paperwork, but it clearly works! I will definitely take this advice on board and log everything from now until my next appointment to see if they’ll listen more! All the best for your hysterectomy.

[Cailleach]

I think you need to stop minimising the pain you have when you speak to any doctors. If it is stopping you doing normal activities it is severe. If it is not well managed with over the counter remedies it is severe. Make sure you tell them about the worst times, though you can add if they ask that it can vary.

Your GP could be doing a lot to help you while you wait on Gynae, They could refer you for an ultrasound scan, although that doesn’t always show endo. They could offer you better pain relief. If you can’t have NSAIDS, there are other types.

It is hard not to be fobbed off by doctors and it can be a hard struggle keeping going, There are really good doctors out there though. Afraid you just need to be persistent. Xx

[eloisejm in reply to Cailleach]

Thank you so much, your perspective really helps. I really do underplay my pain - currently resting due to struggling with period pain as we speak! I will definitely ask the GP for more options regarding pain relief, but I agree it can be hard to get your point across and I never want to be rude, which is where I struggle. I just need to be more persistent in asserting myself to get my points across.

I’ve had an US already, yet it didn’t show anything. They bring this up, but as we all know US scans don’t always show endo. I’m definitely going to go back and see what they can help with though as I know the wait lists are awfully long.