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 Endo The World? 
You are in no way being melodramatic! As great as having the NHS is, its really crap sometimes! Waiting that long, and huge mistakes like that unfortunately are common place but it doesn’t mean they’re acceptable. Write a formal letter of complaint to either the hospital in london or even your local Primary Care trust. Anytime I’ve gotten any progress is due to having to write a letter of complaint! Be thorough, concise, exaggerate a little if you must (although I know its bad enough), list out the things that you’ve not been able to do because of it and state what you’d like to happen. I hope you get somewhere SOON! I am waiting just to see my GP at the moment to be referred to the endo team at St thomas’s in London. (Go knows how long it will take but hopefully soon as the pain is so bad!) Good luck!
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Hi,
Thanks for this lovely and supportive comment. Great advice about writing to my PCT- think I might do that. Good luck with getting your referral, hope it all goes smoothly. Do keep me posted! 🙂
Take care,
Claire
xx
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Very sadly Claire, you’re not alone in having extremely long waits for endometriosis treatment, it’s pretty much the norm and it’s not right. It’s a terrible predicament to find yourself in and I’ve been there myself.
I’d spend the remaining time for your wait preparing for your appointment as much as possible. It’s good that you’ve been put on the cancellations list, that will save you a lot of time. Cancellations do come up from time to time and that’s how I got my most recent laparoscopy. I’d also suggest keeping a pain diary if you’ve not started one already, so you can get right to the point of improving your symptoms ASAP once at a specialist centre.
I’d also be asking questions to your consultants and doctors about what treatments are you receiving to try and halt the endometriosis growth. You need a long term plan of care with several options depending on growth and severity. So if plans A doesn’t work you can do plan B then plan C etc.
I am facing a very long wait to see a rheumatologist at the moment (two months into a six month wait) I know what it’s like to have to hold on until your breaking point only to be told that you have to wait longer. So I’d recommend you do what I am doing at the moment, which is to figure out what you can do in your day to day life to improve your symptoms in your working environment and at home. If you can let me know what you’ve tried so far here I might be able to think of some organisations to get into contact with that might be able to assist you with some free advice. I know it’s tricky as you’re doing a PHD but there’s always a glimmer of hope and we just have to find it.
I think it’s important to state that you have made progress – you didn’t have the best appointment date but you were able to get clued up on how your endometriosis has progressed and this will save you precious time in the future. Please keep that in mind. I don’t think it was a compete waste of time.
Also you’re tired and stressed about all of this and when we feel like that we tend to be harder on ourselves. I think you could do with some professional support for your anxiety and distress. If that’s not an option is there a support group near you that you could attend? Failing that I’ve found the Endometriosis UK support phone line very helpful.
Another thing I found extremely helpful was the (free) expert patients course, there should be one near you in your area so please seek this out. It gives you coping strategies for managing with pain and has a part of the course specifically on how the NHS works, how to get the most out of your appointments and what your rights for treatments are. The other bits I found helpful was dealing with difficult emotions and getting a good nights sleep. There’s some great advice in this course and it all comes from patients themselves and not from health professionals alone, which is really nice as they know themselves what living with pain is like.
Your GP clearly isn’t working hard enough for you, so I would definitely look for another GP ASAP. I put up with my incompetent GP for far longer than I should have and changed doctors (and my new GP got my referrals and treatments sorted straight away). I managed this by asking around to other people that I knew locally with endometriosis and other long-term illnesses to find out who the good, supportive doctors are for chronic illness. Other patients are your best best for finding this out and are more than happy to share this information usually.
When you feel up to it, I think you should consider raising a complaint about your current GP practice about the mistakes that were made. It’s okay if you feel too in the midst of things to consider that one now, maybe something for later. If you don’t want to do a formal complaint, you could do some anonymous feedback with your local Healthwatch organisation (putting the category of gynaecology and endometriosis to make sure that it is reported on in regards to endo).
That’s all I can think of for now. Hopefully there are a few ideas here to help. You can always talk to me on twitter if you need to. I never tire of talking about pain. 🙂
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Hi Michelle,
Thank you so much for this lovely, supportive and balanced response. I really appreciate you doing this when I know you are busy and in pain yourself! Some really helpful suggestions here, and I agree with the points you’ve made. I’m going to make a complaint to my GP practice I think, if they’re like this with me then they clearly are to other women with endometriosis and it just isn’t good enough. If I manage to change things for the better at just one GP surgery it’s a small victory for ‘the cause’. I also agree that it wasn’t a wasted appointment, even though it didn’t go to plan, and did stress this to my family to try and cheer them up.
I have been trying to be as proactive as possible over the past few months about managing my situation, so as not to let all my anxiety and sadness rule my life. I’ve been keeping a pain and symptoms diary (after reading your excellent post about it at the new year), seeing a counselor, seeking advice from my uni’s disability resources centre, reading about endometriosis as much as I can, having acupuncture, exercising, and attending my local endometriosis support group. These things all really help, but I think the root of my anxiety is that I have so many questions about my endometriosis that I want to ask a specialist, and its been such a struggle getting an appointment with one. I was discharged on the day of my diagnosis to my GP who is pretty clueless about the whole thing (she just gave me the pill and said to come back when I can’t get pregnant), so I’ve been stuck at home for 10 months just worrying about how it’s getting worse. I know that seeing a specialist will improve this situation hugely, but I know I’m not the only patient facing long waits. I just need to suck it up and get on with thins the best I can really don’t I!
Lastly, I’ve been looking into the expert patient program and it looks really great. I’m definitely going to track something like this down for myself. I think its doing positive things to help manage the condition that drag me out of this dark hole. Everyone needs to feel like they are in control of their life don’t they I suppose.
Anyway, please take care, and I hope rheumatology help to get to the bottom of your chest pain!
Claire
xxx
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Well fuck. I’d be freaking out and biting at everyone. And crying. And throwing things. It’d be the worlds biggest temper tantrum… I’m so sorry. 😦
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Thank you! I did have a MASSIVE freakout! I also went and immediately stuffed my face with Japanese good which helped 🙂 Really does help to know that others would have experienced a similar reaction though and that I’m not being totally weird. Hope you are doing OK!
Claire
xxx
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