Bit of a Rant

[VioletCoffee]

So last night I probably had some of the worst cramps I’ve ever had. I’m just coming off my second period this month (the implant has been giving me 2 a month for 7 months now) and I’ve never been in so much pain. I had a negative lap a month ago now and it’s feeling like a slap in the face. I ended up crying myself to sleep and don’t even know what time I fell asleep as I was awake until at least 2am with the pain. Since gynae refused to refer me to an endo specialist, I think I’ll make an appointment to speak to my gp tomorrow to ask for one.

I’m starting a new job at the beginning of next month and am terrified on how I’m going to cope if I continue on like this. Luckily it’s a desk job so better than my last one but still, pain relief does not help me

I just want a diagnosis at this point. I’m supposed to be referred for psycho sexual counselling because of my pain during intercourse but haven’t heard anything as well as gastro because of my bowel symptoms. The amount of times I’ve told them it’s ruining my life and that I’m in severe pain every single day I’m just upset that it’s still taking so long. I just don’t understand how if you’re in severe pain and mention a link to your periods, you’re suddenly not taken seriously anymore. Like I remember when I went to A&E because of the pain and as soon as I mentioned I had suspected endometriosis, they just said there’s nothing we can do for you!

if anyone wants to rant in the comments, feel free, I’m happy to be a listening ear x

[Moon_maiden]

Hi

Have you had an MRI? It’s important to rule out other things and if just a general Gynae could’ve been missed. Any op of potential Endo these days the surgeon is supposed to know what they are doing. I’ve heard a lot of stories of it being missed and drs shouldn’t just assume it’s nothing else either, stupid A&E.

Can you afford a private consultation with an expert? I know we shouldn’t have to but it made my life easier when I was trying to get a diagnosis and at the time thought it was just fibroids.

[VioletCoffee in reply to Moon_maiden]

Hi! I’ve had an mri but I don’t think it looked at my bowel (I think I have bowel endometriosis) and I think I’d want another one anyway for a specialist to look at. That’s my next plan actually, I think paying might be the only way to find out what’s wrong.

[Moon_maiden in reply to VioletCoffee]

I paid £400 for a two part MRI, at that time I was checking chest and throat, but it would’ve been the same if I did abdomen and pelvis. I got the report within a day.

There are companies that you can book scans through that are cheaper than going direct to a private hospital, although it’s done in the same place. I’d have paid much more if I went direct.

Hope you get some answers. 🙂

[VioletCoffee in reply to Moon_maiden]

Thank you so much for the advice! I will definitely look into a private one

[Lornalost89]

Hi. Also on a rant this morning. I feel a bit gaslight by my GP today too 😭 I'm awaiting an MRI from gyne in the meantime my Ultrasound showed cysts full of debris (I've had major surgery for twisted cysts and dermoid cysts in the past) my Gyne isn't at my local hospital they didnt have access to my notes at my last appointment my GP feels my cysts "will be fine" and it's just my anxiety worrying me!!! And I just feel like every appointment is bringing a new problem and no one is willing to make a plan and I'm just passed from pillar to post awaiting my next gyne appointment to see if they have my notes and a plan 🙃 I feel its probably beneficial to ask to be referred to a specialist centre even with the 52 week waiting list

[VioletCoffee in reply to Lornalost89]

Oh no I’m so sorry you’re having so many issues I totally get what you mean with the notes, every appointment even if it’s someone I’ve spoken to before I have to tell them everything all over again! I would probably suggest going private if you can afford it, at least then you’ll know something will definitely be done! Sending hugs x

[Moon_maiden in reply to Lornalost89]

Sorry you’ve had a crap response from GP, it’s not anxiety, it’s genuine concerns. GP can also make your appointment more urgent with Gynae and refer urgently to a specialist centre. They are gaslighting because they are stuck, but that’s their ignorance not yours. We get made to feel bad. I told my surgery they were gaslighting and although they are crap at suggestions haven’t refused any request for ages, nor has the gastroenterologist recently after I told them they were gaslighting me. In fact I got an appointment the same week when I said I’d complain to PALS 🤣 and I’d been told December before that.

Make your own plan and get them to provide the right assistance. Keep it in writing on the consult forms on GP website for an appointment.

Sorry to interrupt your message.

[TennisCourt]

Hey lovely! So sorry to hear this. I too have been massively gaslit when I say I have suspected endometriosis, it’s awful.

Now I found out what Endo was my self, no medical professional told me about it.

I saw several GPS, several gynaecologists, had ultrasounds etc, colonoscopy for my bowel problems and EVERYTHING WAS FINE🤦🏽‍♀️

I joined this group and was advised to pay for a one off consultation with a specialist. OMG best ever choice of my life! It was £170 and I was FINALLY validated😭

She listened, she didn’t rush me, she let me work through all my notes and questions, I listed every symptom, she even looked at the pics of my severe bloating and my erratic periods on the flo app.

If you look on the BSGE list and ensure you get a endometriosis specialist. I had to drive over an hour for mine.

She instantly said it sounds like Endo and my next steps is the surgery. She put me on the NHS wait list but that’s 18 months so I’ve gone private which is a 2 month wait, my surgery is 19th December. I know not everyone can do this.

But if you can spare the £170 please go find a specialist and have a consultation, it changed my life to finally be validated.

Before it I was gaslighting myself, maybe nothing js wrong etc but NO all our symptoms are absolutely valid and should NOT be happening, simple as that.

Good luck xxxx