Sick and tired

[Gemma1986]

Brief history, I’ve always had extremely painful/heavy periods, I’ve been under a gyno about 3 years, and officially diagnosed about a year, I’ve had 3 gynaecologist to date, the problem is I’m so sick and tired of being fobbed off, of repeated scans, blood tests etc, I’m due to see a new gynaecologist in December she’s meant to be really good and is part of a endo BSGE clinic, the thing is nothing is working and I’m so worried I’ll be fobbed off yet again, where I just want surgery I see this as the only thing that will make it better, anyone else had this issue how did you eventually get them to listen to you? Thanks xxx

[tasha-marie]

Hi Gemma.

I haven't yet been diagnosed but I do believe my symptoms are that of endo. It has taken me a year and a half of battling to chase appointments and results just to get to where I am now, it sounds like you will understand. I made a complaint at one point as I was repeatedly being fobbed off, and treated as though I was making it all up/overreacting. This seemed to prompt a very swift response to any queries for a short while but the service declined again.

This has lead to my pain getting worse and worse in the meantime, and i'm having to very carefully use strong co codamol daily for pain relief (after research Ive seen that it's not great for young women as can become very addictive.) Doctors don't seem fussed though and happily re-prescribe just to get rid of me i think! (Did you have a constant pelvic throbbing pain that gets more agonising as the day goes on?? I really cannot wait to get to the bottom of this, I can't carry like this much longer

Out of desparation, as my next NHS appointment wasn't due until next month, I paid for a private consultation a couple of weeks ago. As a result I have an MRI scan tomorrow which I am praying will show something. I have since been contacted by the NHS to arrange a follow up appointment after my scan tomorrow.

Honestly, it seems that only officially complaining or booking a private consultation creates a sense of urgency or gets anything done. The private doctor was a gynae specialist and obstetrician and seemed to be on the ball, and actually undertanding the severity of the pain.

I totally understand how mentally exhausting it is to feel like you are having to chase, just to be fobbed off. It's great that you're being referred to a new gynae who sounds great. In the beginning of my ordeal i found that a 'fresh pair of eyes' moved me forward a little quicker. I really hope you find an end to this and that you mange to conclude any treatment quickly ❤

Just no matter how fobbed off you get don't be afraid to challenge them in respect of the next steps there and then. You have every right to, your health is extremely important. This process has certainly taught me to be a little more firm. Xx

[Gemma1986 in reply to tasha-marie]

Thank you for your response, oh I definitely will be challenging them, as it’s completely taken over my life, constantly taking painkillers, I’ve cut down works hours, I can only really go out (as in a lot of walking around or standing) for a few hours then have to come home and lay down it’s exhausting xxxx

[tasha-marie in reply to Gemma1986]

I know it sounds horrible Gem but i'm a little relieved you've said that. I am the same, i think even my family think i'm being lazy/milking it but I genuinely really need to lay down after a couple of hours of standing up. Im 27 but feel like 60. Need an afternoon sleep every day and quite frankly some days feel like i've had a bottle of wine and my entire day is just a blur. Whilst its good to know we're not alone I really really hope you manage to get sorted soon, this is just horrible ❤

it sounds like your new gynae specialises in endo and so will likely be a lot more engaged with your situation than your previous consultants have been.

If you do get really stuck, my private consultation seems to have shoved a rocket *somewhere* with the whole NHS situation and I feel like i'm finally making some progress. It wasn't cheap at £200 and I certainly don't have that sort of money to throw around again, but it's there if you don't feel you get the service you deserve in December. Though I have everything crossed for you 😚 xxxx

[Char411 in reply to tasha-marie]

I know exactly how you feel. I’ve been having this battle for over a year and have had 2 scans, full blood test, an endoscopy and a colonoscopy (tests I had to push for and others to rule out IBS etc)all have been clear but my GP has said he suspects endo and after reeling off a long list of symptoms to my GI he said he suspects rectovaginal endometriosis. My GP has referred me to gynae twice in the past 6 months and my GI said we need a gynae consult and yet I’m still waiting. I feel like I’m going crazy at times and the stress leads to flare ups. I don’t understand why they want to fob us off. It’s so frustrating. I just want my life back. I’m sitting here now with a backache and my uterus throbbing/burning and that’s after taking 30mg of codeine, I generally have this pain daily. I feel bad for my long term partner and we can’t go out and about and do stuff like we used to, he’s very understanding but I still feel bad. Hopefully tomorrow will be a better day.

I hope you get your answers soon x