I FINALLY had my hospital appointment. It didn’t go to plan.

As I have mentioned in previous posts, I have been waiting for quite a few months for my appointment at an endometriosis specialist center in London.  I’ve been pinning so much hope onto this appointment, and it’s the only thing been pulling me through the last few months, thinking I would finally get some help and support.  My family were even more excited for the appointment than me, as they are just desperate for me to start getting better or for some progress to be made in my care and treatment. The appointment was this Monday, but of course, this is ‘The Endo Lady Show’ and so it didn’t go to plan. WHY DO NONE OF MY PLANS GO TO PLAN? Let me tell you what happened…it’s quite a long and complicated story so please do stick with me.

Even arranging the appointment itself was no mean feat, as my GP wasn’t keen on the idea. She didn’t think it was necessary as she said ”endometriosis isn’t a big deal.” Anyway, she did eventually agree to the referral (after much begging), and I received an appointment through the post quite a few weeks later, on Christmas eve. Unfortunately, it was clearly for the wrong department (diagnostic gynecology), so I cancelled it and called my GP’s booking department to point out the error. I gave them the exact details they needed to make my appointment through NHS choose and book, and a couple of weeks later I received a letter from my GP practice saying the appointment had been made and listing the time, date, and clinic number. This whole process took around 4 months, which is quite a long time I think. Still, I was booked in, and apart from another long wait of 15 weeks all was well I thought.

My partner and I arrived at UCLH with plenty of time to spare and made our way to the clinic number I’d been given. I signed in and was asked to complete a short medical questionnaire, which I did no problem. Two hours later we were still sat in the waiting room and I hadn’t been seen. I thought this was pretty weird so I went to check up on what was happening with the receptionist. Turns out they’d forgotten me- can you believe that?! So that wasn’t a good start. I get really anxious in hospital waiting rooms so I was feeling really agitated and exhausted by this point. The administrative staff were totally panic stricken about it though in a slightly hilarious way, and one receptionist actually chased a consultant down the corridor to tell them I was still here.

Around 30 minutes later a registrar came to collect me and led me down the hallway to her office. The first thing she told me was that this was not the specialist center and that I had been referred to the wrong place. She said they had realised as soon as they received my referral that it was for the wrong department. Time stood completely still for a moment and I felt sick to my stomach, but somehow I managed to hold my shit together, smile, and continue with the appointment without going elaborately insane. She told me she would happily refer me to the right place and that this would require an in-depth health interview and a trans-vaginal ultrasound which we could do there-and-then. I had written down a list of all my symptoms to take with me, and I made sure she noted them all down in my questionnaire responses.

I’d never had a trans-vaginal ultrasound before, and I can’t say it was a pleasant experience. I actually threw up when she was pushing on my ovaries because the pain was so bad. So that was pretty awkward. On a positive note, the doctor was able to map the current state of my endometriosis pretty clearly, so I am now much more up-to-date on where things currently stand. Sadly she said that the endometrioma on my right ovary that I had removed in August is growing again with a vengeance, and that I now also have a cyst on my left fallopian tube. Since my surgery my right ovary has also become attached to the back of my uterus and abdomen wall, explaining the increase in my pain on the right hand side. And for the cherry on top, she also said that I have adenomyosis. Lucky me! I’m not sure about the extent of this though as she didn’t go into detail.

When I was being told these things I just went totally numb inside. That seems to be my go-to response in a crisis. The registrar then left me for around 20 minutes while she went to arrange my appointment at the specialist center. When she came back she looked really sheepish, and said that the next available appointment she could make for me is in May- three months away. I hate that I did this, but I actually broke down in tears at this point. Months and months of anxiety and anticipation just caught up with me. I told her I just don’t know how I can wait that long, since I have been trying to get this referral since August. I told her about how badly the pain and fatigue is affecting my PhD and my mental wellbeing. She was super apologetic and I could see she felt bad for me. She said she can see from my notes and scan how desperately I need to be seen by the center, and she has made sure I am at the top of the waiting list for cancelled appointments.

So that’s where I am again now. Still waiting- for answers to all my questions, for help, for advice. Still in limbo. Still worrying myself half to death about all my cysts and endometriomas. By the time I have my appointment at the specialist center, I will have been waiting to see a specialist for 10 months-that can’t be OK can it?! There are loads of people in my support group who were diagnosed after I was, but who are light years ahead in their treatment in comparison to me. I’m happy for them, I’m not bitter or begrudging, but I just want the same for myself.

I’ve had several severe panic attacks since my appointment and I haven’t gone back to work yet. I’m a bit of a mess to be honest. I usually do a fairly convincing job of staying strong and positive, but I’m feeling so broken and lost right now. I just want to give up. Since being diagnosed in August I’ve had to battle so hard to make any progress at all in my care, and I’ve still basically gotten nowhere. I actually want to make some complaints I think because I’m so angry; about my GPs attitude to my care, to my first hospital (Addenbrooke’s) for giving me no followup or treatment-plan, an to UCLH for seeing my referral was to the wrong department but for accepting it anyway and delaying my correct referral by several months (I can just about forgive them forgetting my existance as I sat in their waiting room!).

I’d really appreciate hearing your thoughts and feedback about this. Am I right to feel upset, or am I just being melodramatic? I really don’t know anymore. Do you have any advice on making constructive complaints? Also, if you have any thoughts or tips about adenomyosis please do let me know them.

Love,
Claire
xxx

The worst GP appointment ever!

When I started this blog, I decided that I didn’t want it to be a haven for my trauma and pain. My intention is to make people laugh where I can- I often see the finny side of difficult situations (it’s a blessing and a curse), while also straying true to the reality of my life with endometriosis. That said, this is yet another angry and ranty post, so apologies in advance, but I’ve decided this is an important experience to document. Having FINALLY received a copy of my notes and photographs from my laparoscopy in August, my GP called me in for a meeting to discuss the findings. Having read up on the topic extensively and attended the Endometriosis UK Information Day, my aim for the appointment was to gain a referral to an endometriosis specialist center in London. I’m convinced that my case needs to be reviewed by experts, and a long-term care plan put in place for me.

I think the appointment was the most unsatisfying encounter I’ve had with a healthcare professional in my entire life, and to be honest there have been many dismal instances so that’s really saying something. It started off fairly well, as she printed off and showed me the full results of my surgery which I have been desperate to see for months- I didn’t have a follow up appointment with my consultant after my surgery and have been pretty much left in the dark. However, things went downhill from there pretty quickly. I’m not exaggerating at all when I say it went like this…

Me: To be honest, the diagnosis has also been such a big shock for me, it is hard to take in.

GP: <Looking very puzzled> Um, why?

Me: Well just how bad the damage is, and that I have a chronic illness. It’s pretty upsetting. And it affects my life so much and holds me back, feeling so unwell and in pain all of the tine. And it makes me so worried about my future.

GP: <Rolling eyes> Riiiiight. To be honest you are making too much of a big deal out of this aren’t you? Endo is no big problem.

Me: <Stunned silence>. I’m not ‘making a big deal’ out of it at all. I’ve actually suffered for years hardly complaining at all. But look back through my medical notes, I’ve had constant hospital referrals for years for pain and fatigue.

GP: Well endo shouldn’t make you feel unwell.

Me: Well it does. It’s the chronic fatigue I think and the inflammation it causes.

GP: <Laughing> It doesn’t cause chronic fatigue. It should just cause pain when you’re on your period.

Me: But it doesn’t…I am in agony a lot of the time. Sometimes I can’t breath, and the endo on my diaphragm causes severe burning pain in my back, shoulder and neck. It really affects my work and my PhD- I’ve had to contemplating quitting. It’s been awful.

GP: OK, you just really need to calm down about this, you’ll be fine. It really isn’t a problem.

Me: Well actually, I’ve been doing some reading and speaking with other people who have endo, and I want to be referred to a specialist endometriosis centre in London for a second opinion and to work out a way forward to manage my pain.

GP: I really don’t think that is necessary. You’re just making too big a deal of this.

Me: I’m not. It is a recommendation in best practice guidelines that all diagnosed cases of endo are referred to one of these specialist centers. And it was recommended in the BMJ in March.

GP: The BMJ says a lot of things.

Me: I really think I need this referral.

GP: OK. I will try and get you a referral, but I can’t make any promises. I’m on annual leave from today though so I won’t be able to do it until after Christmas.

Wow. Just wow. I still can’t really believe this happened. Not to be a pessimist, but I am blatantly not getting that referral am I? And if she isn’t even going to pursue it until January then it just means months more of waiting around in pain. I’m so angry about how she completely marginalised my experience and basically kept telling me the problem is in my head. And the worst part is that she had the evidence and photographs right in front of her about how deep and widespread my endometriosis is! I was also really concerned that she lacked basic knowledge about the symptoms of endometriosis, and that she completely overlooked my psychological distress.

Does anyone have any advice on what I should do about this? Shall I wait it our and see if a referral turns up in January? How do you manage with your GP? Your thoughts are much appreciated as ever.

Love,
Claire
xxx