Feeling lost.
Hey...sorry in advance for an info dump but I'm in a pretty dark place right now and don't know where to go from here...
I'm 28, had my first surgery in 2019 but due to covid I slipped through the net and never received my follow up and was still listed as not yet discharged from the hospital all these years later.
Trying to get by and not being able to keep a job down due to the pain I eventually contacted the GP again who finally put my referral through to a specialist (which should have been done after the surgery apparently) I went through various pain relief medications and am now on the highest dose they will prescribe. I was finally pushed by friends to apply for PIP as well due to our struggling finances and my inability to maintain a job.
Long story short PIP rejected my claim stating that because I am able to take my daughter to school I need no assistance (when a 5-10 minute walk now takes me half an hour and 2 of the strongest dose cocodamol the GP will prescribe. It leaves me on agony but I just can't afford school fines on top of our other debts.)
I just saw the specialist today and left crying. It was an almost three hour trip to the hospital and I wish I hadn't gone. She asked nothing about my symptoms or the surgery and couldn't wait to get me out of the office, I was in her office less than three minutes.
She has refused any idea of further surgeries and wants me to instead make my way to this hospital monthly for hormonal injections for the next 6 months instead when I'd explained the trip had been brutal for me, asked if it could be handled more locally (I was told no) and was visibly in tears with the pain but felt no care, nobody even asked or checked if I was able to get home safely.
I feel so ignored by the doctor and useless to my family. I've spent three days back and forth on hold with PIP or being cut off to try and arrange a reconsideration with the support of citizens advice but my hopes aren't high and now with another almost 3 hour journey ahead of me to get home after feeling so brushed off by the doctor my mental health has taken a nosedive and I don't know where to go from here.
I was once training for the army and now the future just looks bleak.....does anyone have any experience with these injections or even know what they are called? I wasn't even given a name....
This situation sounds truly awful and I'm sorry to hear you're experiencing it. I'm glad you reached out here. I've definitely had the experience of leaving a doctor's office crying and also feeling like I'm out of options. I wish you hadn't had those experiences yourself. Being denied PIP is angering! When basic life tasks take exponentially longer and cause pain like this, it seems obvious to me that you should be able to receive those benefits. I don't live in the UK, but I know many disabled folks in the UK and they are always complaining about how hard it is to get PIP. It's not an easy or compassionate system, from the sounds of it.
In addition, the way that the hospital dropped the ball with your follow-up is terrible. I'm just so sorry that happened to you! You didn't deserve that.
From what I understand, getting a second referral to a different specialist might be tricky for you, but I'm in the US, so I don't completely understand the system. Were you able to get a new referral to a different specialist, I would recommend that. It is clear to me that the specialist you saw today was not listening to you or taking your symptoms seriously. You deserve to see someone who would take you seriously. And being asked to make a three-hour trip both ways when you are in so much pain is just untenable. I saw three specialists before I found the right one.
My suspicion is that the hormone injection is Depo Provera, but it may have a different name in the UK. (It could be something else, though.) I was offered that as well, but refused it for several reasons.
Has anyone steered you toward the Nancy's Nook Facebook group or the website before? https://nancysnookendo.com/find-a-doctor/
This link is for the find-a-doctor tool...there aren't a huge number of UK options there, but it might be a place to start. The Facebook group is good for asking questions and also using their search bar to look for answers to questions you have. The board is huge and your question may not get answered if it's been asked before, so it's worth using the search function first. You may be able to find another specialist that someone else has seen. There are also other endo groups on Facebook, and I've also had success using the #NEISvoid hashtag on Twitter to ask questions about treatments and doctors. I found my migraine specialist that way.
I wish you so much luck and I hope that things move in a more positive direction for you. Sending you gentle hugs! ~Katrina, Endometriosis.net Advocate
