I'm still waiting on a formal diagnosis, I was referred by my GP back in April and I am still waiting for a gynae appointment. I recently admitted myself to A&E because I was in agony after a smear test, they have re-referred me.
I guess I'm struggling with waiting, the pain only gets worse but I feel unheard. I feel very alone in all of this.
hey Char_charlottie,
This is a completely normal feeling unfortunately
our pain isn’t taken seriously and with every period you have the endo grows and causes more pain I’m so sorry you’re having to wait. How long have they said it’ll be until you see a gyny? x
I'm hoping to be seen in the next few weeks. I started taking my pill constantly about 9 months ago to help with the pain but it hasn't worked. So I hope that they'll see that and put me onto the next course of treatment. x
Good luck! I hope you get seen soon. I’ve had to have two forms of contraceptive to stop my bleeding and my pain is still horrific too x
I feel your pain! I first went to my GP in December last year asking to be referred to a gynae, but didn't get that until months later, and finally saw a gynae in July. It sucks. I still haven't got any answers. So I know what you're going through! You're not alone 💜
It is horrendous through the NHS at the moment. My symptoms returned in February 23, had phone call with community gynaecologist in July but appointment with Endometriosis clinic was scheduled for December 23 but has been pushed back to Feb 24. This is just a phone call too I haven't actually seen anyone in person on the NHS. If you can go private, even for an initial consultation/MRI I would recommend it. You could then go onto NHS waiting list if you need an operation but if you can afford it I would highly recommend. I'm lucky to have private medical insurance through work but have paid for a few bits myself along the way. I hope you get an appointment soon. Chase your NHS GP as well, see if they can push you up the list.
You are absolutely not alone lovely. I can bet you all of us women in this group have been in the same position as you and we will all help you!!
I have been waiting for the NHS for years, unfortunately not got anywhere. I joined this group when I had suspicious of Endo from my own research and I got recommended to pay for a private consultation with a specialist, it was £170 and best thing I’ve done. She instantly made me validated, said it’s highly likely I have Endo and I need the lap surgery.
I’m now on the NHS waiting list however I’m going private as it’s an 18 month wait for my area and my surgery is end of this month!
So if I was you, do some research try find a specialist and book an appointment if you can! Make sure they are certified looking on the BSGE website.
Unfortunately in my experience the NHS and GPS just don’t know anything about Endo. It’s really really frustrating but keep pushing. If I stopped digging into what was wrong I would still be none the wiser! Good luck xxx
Ps: feel to message me if you want anymore help. I was literally in your position a few months back so I can really relate xx
Hi 🩷, it can be a very lonely and scary place to be and the invisibility only makes one feel less empowered. It can feel a bit desperate at times with having to go the A &E to manage the pain. Many of us know this path all too well so can empathise totally with you.
Irrespective of the outcome and how long it takes to get the appropriate medical care there are things you can explore to support yourself along the way. I know I wouldn’t be here if I had just waited on the Dr’s to act and know my self care enabled me to go the rounds with them to get the help from them I needed. Things that helped me along the way have been a book by Katie Edmonds called “Heal Endo” that is a fabulous reference book to understanding more and giving great advice to try out for yourself. She has an Instagram feed of the same title. It enabled me to tailor adjustments to my diet without being extreme and make other small changes that have been important for me to quell the ongoing issues .
To help with the pain my GP gave me a free 6week access to try out Curable App combined with a low dose of Nortriptyline which acts along the nerve pathway which is often more effective at reducing the pain than paracetamol or opioids. I still use both even post surgery. It’s worth a try even if it doesn’t completely work to bring it into manageable levels while you are waiting.
My last bit of the jigsaw is pelvic floor rehab - even before surgery to improve its functionality. Endo and adenomyosis really compromise how well it works and this will cause alot of pain alongside the endo itself. Avoid kegels and traditional core work as this is based on tightening the whole problematic when actually endo makes the area over tight and rigid. Instead specialised pelvic physio like that found @corerecoverypt is exceptionally helpful. Dr Angie Muller does a a podcast with @leah-brueg ( number 56 or 57 on her website link ) runs about 1 hour which explains in depth how pelvic recovery physio is vital in healing and managing our pain pre and post surgery. It’s well worth the listen.
I hope things go better for you.
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