Advice needed!!

[LouO7]

Hi everyone,

I posted the other week as my gp suggested I had endo, sent me off with the pill and zapain. I had been in hospital previous to this visit for 2 weeks, due to my inflammation markers being to high and in a lot of pain, morphine was the only thing that eased it. Whilst in there I had X-ray, MRI scan, ct scan.l and trans vaginal scan. Gyne drs just told me my uterus was enlarged then fired questions at me without letting me answer even the nurses felt they didn't listen to me. They then passed me to gastro so had all tests done on my bowel everything was clear so it's not a gastric problem!!! My reason for posting now is since iv been out iv been unable to work as I feel exhausted everyday it's a struggle just to be mum to my boys. This weekend the pain is uncontrollable and keeping me awake at night. Iv tried the zapain, hot baths hot water bottles. I'm not allowed nurofen due to hiatus hernia. Do I go back to my gp or go to a&e??? I don't want to make a fuss or be a pain but it's really getting me down now. I can't take anymore painkillers for hours as iv had to take some during the night to get slightly comfortable. Any advice would be very much appreciated.

[weekari]

First things first... You are not a pain! You deserve help and you deserve to be listened to. Try to imagine someone else, like a friend, was having your experience, would you tell them to just stop complaining and grin and bear it? I'm sure you'd be my them to get back to the Dr and demand to be taken seriously!

I don't know if its a being a woman thing or what but so many of us are like this. We feel we're putting people out, don't want to be seen as a pain or like we're making a fuss and so we suffer unnecessarily.

I think many women with endo can relate to what you say. I certainly can. I had excruciating abdominal pain, along with horrendous fatigue. After a while, I was referred to gastro and had all the tests which were all clear. I was diagnosed with ibs even though I knew it wasn't that, I went along with it and did all I was supposed to do, the FODMAP diet, meditation, healthy everything. It got worse. I wouldn't go to the GP though as I felt I'd done that and the just palmed me off. But I was seeing a nutritionist privately for the 'ibs' and she couldn't understand why I wasn't getting better and she encouraged me to go to GP for a few more tests. I saw a new GP who had a hunch it could be gynae related and sent me for an ultrasound & did bloods. It can back with raised ca125 and the ultrasound found fibroids, a bulky, tilted uterus. The GP told me I could have ovarian cancer and did urgent referral to gynae. I was panicking big time. Gynae downgraded my referral to normal though so I had to wait 3 months worried I had cancer. In that time the GP said it wasn't cancer but it could be endo and suggested I went on the pill as it could help. I reluctantly agreed but my symptoms did massively improve. Gynae were so dismissive of me. Said my abdominal pain was caused by sex creating a spasm even though I had been unable to have sex and had only managed it once over that time (like 18 months 🙄). She said she was convinced I didn't have endo but she'd do a lap just to 'ease my mind' . She was so patronising and treated me like I was neurotic. Because if the cancer scare, I went for the lap but it all came back clear. Yet again I felt like an anxious idiot. That it was all me overacting to a sore tummy. After that I stopped going to the Dr. My abdominal pain did reduce massively and my fatigue improved a bit. I stopped taking the pill as I thought there was no reason to continue. Then about 6 months later I started being troubled by hip and back pain and my fatigue was gradually getting worse. I saw a physio for a while, it got worse. She said I needed to see a Dr. I was eventually referred to orthopaedics (9 month wait) and the consultant thought it was likely arthritis. I had an mri and got the results 5 weeks ago... They found Severe endo throughout my pelvis 😭

I'm seeing the surgeon in a few weeks.

Looking back at all this, I feel so annoyed with myself for letting all the dismissive Dr's get to me and not fighting for myself. The last 4 years of my life have been hell and I just lay down and took it. I would go into the dr with this apologetic attitude and act like I was so grateful for their time. But I wonder how much of that left me being dismissed and not taken seriously.

We deserve healthcare. We deserve to be listened to. Just get back to your Dr and tell them everything. The only way to test for endo is a lap so they can't tell you you don't have it. Symptoms alone aren't enough. I don't have all the endo symptoms (my periods are no issue) but I'm full of endo.

One bit of advice is to track all your symptoms. I think it's so easy to forget what you've experienced and to miss how this relates to your cycle. I've done a little diary where I rate each of my symptoms out of 10 (back, hips, stomach, energy) and have a column to describe anything else that was going on. I've realised so much from doing this.... Mostly that I don't realise how bad things actually are and that I seem to have a worse time before my period.

Sorry for the looooong post! I hope it helps you feel more empowered to go get the help you need (and deserve) xx

[LouO7 in reply to weekari]

Thank you for replying. Sorry to hear you've suffered aswel. Iv started keeping a diary as like you said sometimes you forget especially when your on the spot and having questions fired at you. I took your advice and went back to my gp I clearly looked in pain as he actually sat and listened and went back through my notes from the hospital. He took bloods there and then and is ringing this eve, he's referring me to a gynaecologist and iv been given orimorph to take the edge off. I'm hoping now the wheels are in motion 🤞

[weekari in reply to LouO7]

Yes! Well done. Its great that you took control and have got someone to listen. Let's hope this is you now on the path to getting some actual treatment.

💪🏻

Xx