Really getting to me

[Lofty1589]

So 3 weeks ago, I starting having very severe pain in my lower stomach/pelvis/hips. A week later I had my “period” ehich lasted 3 days because it took three days for my body to realise I wasn’t taking my pill. Whilst the pain is better, I’m still in a hell of a lot of pain - especially in my pelvis.

I was given co-codamol and that didn’t help with the pain. I went to A&E because it was so bad but sent away to a little doctors surgery on site where I was just given extra codeine and told to wait for my referral. My GP has expedited my referral so it is now urgent and that was 3 weeks ago - yet I have heard nothing at all.

Being at work is a struggle as I feel so pressured to be in after having a whole week off. My depression is getting worse because I can’t remember what it is like to not feel pain, nausea or lightheaded all the time. Lack of sleep is really beginning to affect me - at most I’m getting about 4 hours sleep recently. I feel like calling up gynae again to see where my referral is but I had to chase the whereabouts of my expedite letter last week as they had lost it - I don’t want to risk pissing anyone off and making this wait even more difficult.

I just really don’t know what to do anymore. I feel like I’ve been waiting for years (considering I have been investigated for lightheadedness/fainting etc for 3 years) for one appointment that could finally start my journey of getting better. I’m so fed up and I honestly worry about my mental health with how I feel physically on a daily basis - and that’s not good! I had hoped for more support at work, since I work for a Mental Health Trust, but no suck luck. Nothing can be done until I get my appointment through. I’n desperate to have a laparoscopy despite hating anything to do with hospitals so I can have an answer and hopefully peace of mind one day

Sorry for the rant. But, thank you if you managed to get through all that.

[Glitterfairysparkle]

Hi. I know how you feel.

It's awful waiting for a an appointment to be referred for a laparoscopy.

I was in pain everyday for a over a year before my lap and it affects your whole life physically as well as mentally.

I would chase up your referall once a week until you have an estimated date as its not fair that they haven't given you an approx waiting time. Also that is shocking they lost it in the first place 😩.

I had my laparoscopy last week and they found I had deep infiltrating endometriosis. I was terrified they weren't going to find anything and I'd be back to square one and thinking I was going mad.

All I can say is just keep staying strong because everyday your getting closer to an answer. 💛

[Lofty1589 in reply to Glitterfairysparkle]

Thank you so much for your reply. It truly means a lot. It really is frustrating and I’m honestly at wits end after feeling ill for 3 years. I am thinking of calling up today, just to see if anything has progressed because it is ridiculous.

I’m glad that you were able to have your lap - obviously not good to find endo, but I’m glad you have that stepping stone to manage it all better etc.

Thank you so much 💜💜💜

[Glitterfairysparkle in reply to Lofty1589]

That's ok 🙂 It is a very lonely feeling to have when waiting for answers and having to chase all the time.

I hope you find out an approx date soon and thank you for your kind words. 💛

[Lofty1589 in reply to Glitterfairysparkle]

I called gynae up earlier but apparently they now have no record of my expedite letter to make my referral urgent despite chasing it twice with my GP - it really is getting ridiculous now ☹️

[Glitterfairysparkle in reply to Lofty1589]

That's insane!!!! perhaps ask to speak to your gp and find out what's going on! Sound like a bunch of idiots for urgent referal to go missing twice 😩 What a nightmare!

[Doggiedogmom1973]

Hi Lofty1589,

Seriously, you deserve better than this. Go to the top private specialist doctor in the country, you'll be booked in for a laparscopy in no time. (If you have health insurance, if not I'd recommend it). As a top specialist specialises in deep-excision surgery which cuts away the endo and leaves you in no endo pain post surgery (burning off the endo leaves you in total nightmare pain).

Secondly, read this book called: "The Doctor Will See You Now". Author: Tamer Seckin, M.D. He's one of the best endo surgerons in the world, and he knows your pain having treated people with gold standard surgery for 30 years.

You're not getting treated good and still in pain because either: you're going through the slow public system, your gynecologist is not that good and lastly, there is still a total lack of awareness with endometriosis right from the GP's, which is why you're being shoved off by A&E, doctors and having no support at work. Seriously there is good endo gynecologists out there somewhere, just do lots of research on line. even look at Tamer Seckins webiste. really good.

All the best...xoxoxoxo.

[Lofty1589 in reply to Doggiedogmom1973]

Thank you so much for your reply. I’ve looked at getting health insurance but being an apprentice, my wage is low and I don’t think I could afford it. It’s just very frustrating overall and I just wish it could all be sorted xx

[Doggiedogmom1973 in reply to Lofty1589]

Okay, thats absolutely fine, there still is some hope, stay with me. So, it juts means you'll have to do a little more research than someone who doesn't have insurance, to find a 'gynecologist' who can operate on you that does 'deep-excision surgery', is 'well known for their good works', and works through the 'public system'. Ring their offices and see if they will help you directly, there is definately surgeons who would love to help you out there, you just need to find them, they will never come to you. Be your own boss, don't get pushed around by others. your health is your happiness.

all the best.. xoxoxo