Possible endo, annoying consultant

[Tarn2019]

Good evening everyone, I don't yet know I have endo but I'm leaning towards it.. Here's my story so far..

So in October I had a major heavy period which is completely unheard of for me shortly after this period I had agonising pain, seriously bloated and extremely uncomfortable.

Come December the pain has increased and I'm sent for a ultrasound where they found a 4cm septated cyst on my left ovary the pain is now 10/10 I'm put on tramadol 2x daily.

Had a consultation with gynaecologist who was quite rude saying if I was in that much pain I should have admitted myself (no way during a pandemic!) if I was in that much pain.

He sent me for another ultrasound scan this week and apparently the septated cyst has gone but I now have a 4cm cyst on my right ovary which she classed as normal so didn't note it down and my consultant has written me off saying its now all fine, but the pain is getting horrendous and I'm now on 4x tramadol a day and paracetamol.

I'm at a complete loss of what to do or what could be causing the pain.

Can anyone help me at all please.

Many thanks xx

[Tarn2019]

Can anyone help please?

[Tipps]

I had an appointment with a rude gynaecologist too, he was awful and I complained to my GP he said people either love him or hate him, 🤔 I had endo treated when I was younger and a few years ago it returned with a vengeance. I am taking 2 doses of a mini pill daily and have changed my diet slightly - lactose free milk and some of the fodmap advice and the symptoms have improved loads. They also suggest the coil as a life saver so maybe try mentioning these to your GP, if not already? The unhelpful gynaecologist just wanted me to take the Zoledex injections and HRT, heard it does help but I had little faith in his advice due to his awful manner. Good luck and hope it improves for you.

[Tarn2019 in reply to Tipps]

Hello thank you for replying to me 😊Unfortunately a coil is something I'm not even prepared to try, I'm a ex rape victim for (10years) so anyone with the vicinity of that area completely terrifies me.. Smears are horrendous.

I just want to find out what is going on and for someone to recognise that I am actually in so much pain 😭 xx

[Brambledoggy]

I can only try and help you. If you read my profile, you’ll read my (quite) similar story about cysts. I’m not sure how old you are. But you’re going to need to get a second or third opinion. I had a cyst (large and called a chocolate cyst) and it was removed. While removing it they found lots of endometriosis and thus I was diagnosed. I had never even heard of the condition. That was a long time ago. I’m now 50. There is lots of good advice on here that I hope starts you off on your journey. The medical profession can give mixed advice, in my experience, not all of it incredibly productive or helpful. Good luck in getting a diagnosis.

[Tarn2019 in reply to Brambledoggy]

Thank you for replying to me 😊I'm 33 and I have had 3 beautiful babies via section.

Surely being on 4x tramadol a day means there is something going on? My gp has written a letter to him confirming the pain I'm in and how tender my tummy is! I just hope he listens and can over ways of helping me xx

[Brambledoggy]

It’s not nice to be on so many meds for sure. Tramadol didn’t touch my pain AT ALL and in fact just made me feel really bad, itchy skin and ringing ears. Strange dreams etc. It’s also highly addictive as it’s an opioid (derived from poppies I believe) and your GP should have warned you about this. I now just use a thing called a Livia device which sticks to your pelvis and gives me a degree of relief. I found simple paracetamol and ibuprofen mixed also helped, but not with anything else, just those two. Believe me I’ve tried every hormone and med there is. Even morphine doesn’t help my pelvic pain and cramping. I also gave my diet a huge overhaul which has been about the only thing that definitely does makes any difference. Big lifestyle overhaul too to avoid stress. Endo is catch 22 because it’s so debilitating and exercising can be hard when you’re crippled with pain. It’s very isolating but try and be kind to yourself and ask for help from sympathetic friends, relatives etc, my LIVIA device came from USA but I think they have a U.K. website now. It’s like a TENS machine which you might be aware of if you’ve given birth three times! I just know you have to really keep on and on at the NHS for endo and try and get referred to a BSGE accredited endometriosis centre who can guide you in the right direction and investigate further. There are also lots of great websites and books you can read but deffo further investigation for you!! Happy Sunday, hope the pain subsides. It’s evil...😔 Good luck.

[FazzyB]

Hi T,So this sounds a bit odd why they have not looked to do anything else??

Endro can not be diagnosed without a MRI scan or laparoscopy, as No internal scan or ultrasound will show endometriosis.

So I would go back to GP and say what you feel and that gynaecology team dismissing this issues as you can not just rely on tramadol,

You need to be seen by Endometriosis gynaecology team, maybe ask GP to be referred to specialist in endometriosis

Take care all the best

[Tarn2019 in reply to FazzyB]

Thank you for your reply, I got the doctor to send a letter to Mr dipper stating how much pain I was in but I've heard nothing, I feel so let down by the system 😭

[FazzyB in reply to Tarn2019]

Sorry to hear this, but you know typically it takes average 8 years to be diagnosed I would say for me i fall in that bracket too,

I had gone back and forth so much before they managed to figure out what was happening,

I sadly had it spread so much that endometriosis dated my tubes which resulted in my tubes having to be removed,

But enough about me, you need to wait a push again if you don't hear back within 4 weeks waiting time,

As you really need to be discussing with endometriosis gynaecologist to get the diagnose you need, chase and chase till you get seen by the right team

Hope that helps

Stay safe and fingers crossed they get something happening for you soon 🙏