Feel let down & unsure where to turn

[KittyTherapy]

I'm so upset and angry today as I've just heard my referral to a BSGE centre has been rejected.

I had a lap last year and was eventually referred to a specialist endo centre.

I obtained copies of all my records and sent them across so they had all my info.

I received a letter of acceptance saying I was on the waiting list.

Last Friday I received a letter from general gynae (who i had been discharged from) offering me a telephone appt. I phoned them today to ask for the context and was told by the secretary that the BSGE have since rejected my referral as its not "severe" enough.

I'm now at a complete loss. The telephone appt with general gynae is next week and I presume she will just relay this same information ive been told today. I'm really doubtful I will be given any more treatment options or onward referrals. To put it simply, I have absolutely no faith in general gynae as I've had so many issues with them before. Last time I spoke with the consultant she was reluctant to do anything more for me and refused my request for pelvic physio. It felt as though she was washing her hands with me.

I'm so upset as i was really hopeful the specialist centre would review things for me and i would have access to an MDT.

I feel my appt next week with general gynae will be her trying to fob me off and I will be left under nobody.

I'm still having symptoms and am under gastro for investigations at the moment. My colonoscopy was clear but I am wondering if the adhesions on the bowel wall are back as a recent US showed my ovaries were stuck down again.

I just don't know where to go from here. It's so tiring constantly coordinating your own care and coming up with suggestions as it seems nobody else really cares.

Also waiting for a occy health review at work as things are becoming increasingly difficult.

Not really sure what response im hoping to achieve with this post. Just needed to get it all out. If you have any advice/ suggestions please do say.

Thanks if you have read this long post! x

[Regenallotment]

oh Kitty this is so disappointing, I hear you.

But…. When you are ready pick yourself up, put yourself first and don’t accept no or nothing or watch and wait for an answer. Ask what will be done to address the adhesions etc. make a list.

Also ask the BSGE centre what their appeal process is. Explain the impact on your life, the hopelessness you feel when receiving this information and if all fails contact your MP to advocate for you. It’s their job.

Good luck 👍

[KittyTherapy in reply to Regenallotment]

Thank you so much for your reply, I hadn't realised I can appeal it so I will contact them to discuss it. I could understand better if my referral was awaiting triage but I was told it had been accepted and was on a waiting list so now confused why its been rejected. Its so disheartening. Il definitely appeal and thanks for advice about MP. I wouldn't of thought of that either x

[Regenallotment in reply to KittyTherapy]

question everything and stand up for yourself 🙏

[Rainbow2468]

Hi I'd put a complaint into pals too, it's outrageous that you're being treated so badly, sending you a safe hug too 🤗

[KittyTherapy in reply to Rainbow2468]

Thank you lovely! x

[635703 in reply to Rainbow2468]

I would title the email Formal complaint. It means a higher up person, may see it - just a thought. Google “right to choose” as we may have rights to choose a centre or hospital and a named Consultant. But fact check this.

Things are so difficult when you feel so very unwell with symptoms, work are on your back and you’re trying to live life with horrific symptoms. Oh and co-ordinate your own care.

Don’t forget to mention your request for Physio has been denied too.

Say you want a highly skilled and experienced surgeon familiar with Endo to excise (cut out Endo) and not a simple ablation. You need to ensure they get every last bit out of your body. Or you will need repeated operations that will disrupt your quality of life.

Just some ideas here.

Don’t forget the Endometriosis.UK helpline. Emotional support is needed so badly for us. Look up opening times on the website and give it a go 🫂💞

Cheering you on 💛

[KittyTherapy in reply to 635703]

Thank you so so much for all your suggestions, I'm going to look into these things. Its helped me just to know you ladies all understand as its so easy to let the doubt & negative thoughts creep in x

[635703 in reply to KittyTherapy]

Yeah? So glad you feel seen.

Please, be so kind and gentle with yourself. It’s not your fault you have Endo. You are not a problem or a burden. The disease IS the problem. You have probably tried everything at great financial cost. It burnt me out trying to get well.

I just am more accepting of it nowadays (19 years). Honestly, still have really bad days. But I watch my mental health like a hawk.

Just be so kind, gentle and self compassionate. It will stop you being super critical with yourself.

Living with chronic illness is really tricky. Be your own best friend is a whole other kind of challenging. Maybe you know all this. Sorry if you do.

It’s taken me years to learn this with a therapist. It didn’t come easy to me at all. Sometimes I still go down and spiral.

Living with Endo can make us fighters or Warriors. We need to self advocate all the time, whilst feeling absolutely terrible, drained, exhausted with pain. That’s a lot to deal with mentally. The waiting for laps, etc. is HARD.

Ooh, I think there’s resources for employers on the website. Might be good to take to Occy Health?

Huge hugs 🤗

[KittyTherapy in reply to 635703]

Thank you for your kind words! This issue just triggered me and sent me into a feeling of hopelessness. But I'm feeling a bit more in control now and have a plan of action.

I can struggle with my mental health, and it doesn't help when you feel like the system is against you / everything is a fight for proper care.

I have been seen by Occy health before with some adjustments in place but they need reviewing. I'm a bit unsure what they will accommodate but we shall see! x

[635703 in reply to KittyTherapy]

That’s great and I think with Endo we pretty much all struggle with our mental health in different ways at various times x x x The crumbling NHS does not help but there are some great Drs who are amazing x x x

[Rainbow2468]

You're most welcome x

[Faithstar]

Hi kitty

Sorry to hear this but I was also in a very similar situation I went to my MP and he wrote the specialist centre and they accepted my referral and also took my waiting time in to account too. Good luck I hope it goes well 🤗

[KittyTherapy in reply to Faithstar]

Thank you for your reply! That gives me hope x