Doctor Sleep

Well, hi there.

Back again to report on the latest happenings in my adventures in gynaecology. I wish I was feeling more positive right now but I want to be aggressively honest and say that admit that I'm feeling extremely tired, fed up and low. I alluded to my appointment with the gynaecologist in my last post and I saw her again yesterday and it was a very disenchanting experience which you get to read about now. Yay?

My gynaecologist is nice, don't get me wrong, but she is a nightmare to communicate with. It feels really difficult to be heard and it never feels like there is room for questions or discussion. It's like she has in her mind what her plan is and there is no possibility for deviation. It's really difficult to feel happy and confident in your treatment path when you don't feel like you gel with the person that is making decisions about your health.

I don't think it ever got off to the right start. I first started "seeing" her last year. I say "seeing" but I only ever saw her once, and that was because she performed the hysteroscopy I had. Every other consultation had been over the phone. I still remember feeling bewildered by that first phone call. It just wasn't the right forum for trying to distill nearly 10 years of my experiences and previous treatment. How are you supposed to form a positive relationship with your medical professional when you can't make yourself heard?

Last year, I had an internal and external ultrasound and a hysteroscopy. The results were fine and I was discharged back to my GP. It completely deflated me because I was still in pain. It felt like being abandoned and back to square one. There had been a vague suggestion about a progesterone supplement even though I had the coil and I never really understood what the purpose of extra would be. My GP didn't understand either so wrote to her for clarifcation. After a few months she had to send a chaser and instead of responding to the query, she told my GP to refer me back.

This time it was face to face so I thought that would be helpful. Spoiler: it wasn't.

Over the phone she kept rambling about the need to remove my coil but again, it wasn't really clear to me why that was necessary and I was nervous about it because I was worried about losing whatever easing of my symptoms it provided.

Anyway, I had my appointment last week. It wasn't a good start when the first thing she asked was what I was there for. That's how it always feels when I speak to her, like I'm starting from the beginning. It's so frustrating. Considering that the only reason why I was seeing her again anyway was because of this need for clarification about the progesterone, you can imagine my surprise when that suddenly didn't seem to be a thing any more.

I told her that I was still in daily pain, that over the last near decade I had had numerous tests and procedures and I really wanted to make it clear that of all the investigations I've had, it has only been my two laparoscopies that diagnosed my Endometriosis , congested pelvis or polyps.

As I mentioned above though, it seems like nothing I say can move her from the course of action she has already decided on. I asked again (I've mentioned it a few times by this point) about the possibility of a hysterectomy but she was categorically about it not being on the table. She told me that it wouldn't be a cure as Endometriosis can still happen even after the womb has been removed, which I completely understand. I understand Endometriosis and how it works but to be summarily dismissed like that is demoralising.

Instead she booked me in the following week (yesterday) for my coil removal.

When she called me in, before we got started, I tried telling her about my trip to A&E over the weekend and how much pain I had been in. I was honestly stunned by her reaction. She looked at me in a way that seemed to say "why are you telling me this?" and all she asked was if the A&E doctor had diagnosed me. I mean, really?!?!

I was completely on the back foot after that reaction and before I knew it I was being ushered behind a curtain to have my coil removed. Thankfully, the procedure was quick and within a couple of minutes, it had been pulled out.

After that, I had to fill out a consent form as she wants to have another look "in there" so I have to have another hysteroscopy. I had one a year ago. I honestly don't see the point, and that sums up my whole experience really. It has all felt so completely pointless.

The only hope I have now is that she wants to try me on injections of Zolodex. Again with the poor communication because it wasn't made clear to me what it is. I understood it was a hormone injection and that it was for my symptoms but I had to research it myself at home to really find out more.

Next steps is waiting for my hysteroscopy appointment and after that to start my injections of Zolodex. She also wasn't helpful about my HRT. I have been on Estradiol patches since 2018 and I had always been told that I needed to have it in combination with progesterone as without it increases the risk of cancer. When I asked what that would mean for me once I had my coil removed which gave me that protection, she was dismissive. I decided at that point that I was going to get an appointment as soon as I can with my GP to discuss that with her since I'm just frustrated, confused, and fed up at this point.

I came away from the appointment sore from the coil removal and just generally bewildered. I felt my eyes swimming while I was in the taxi home and burst into tears when I got home.

My husband already had a cup of tea waiting for me and I just unloaded all my frustration on him and sobbed. I was already exhausted after my trip to A&E and I just felt thoroughly hopeless. It just overwhelmed me that I have been on this hamster wheel for nearly 10 years and I feel further away from any relief than ever. It's left me feeling like I would have just been better off with GP, even though all they could do was issue me painkillers and HRT but at least I felt like they were empathetic.

My mental health has been in the gutter since. I woke up this morning still sore from the coil removal and with a headache probably due to lack of sleep and crying.

I've decided that depending on how it goes with the injections; once I'm discharged back to the GP I'm going to ask to see if it is possible to referred to someone else because I can't keep feeling anxious and disappointed every time I speak to this particular consultant. It's so disheartening to essentially just be a name on a screen and to be asked what I'm there for. Like it's not even worth keeping any notes so I have to start from scratch each time and still get nowhere.

Just feeling seen and heard would make a huge difference. I don't know if it's just because she has this tunnel vision approach so can't see anything beyond what she has already decided to do. I'm still baffled about wanting to see inside my womb again rather than what might be going on outside.

I was in absolute agony on Saturday. I felt embarrassed and humiliated being doubled over and crying in a very public setting, and to then try to explain to an expert and be greeted with essentially a shrug...it's just made me feel like I have nowhere else to look for answers.

If you can't at least have an open dialogue with your medical professional, then what's the point? I have tried several times and when I'm cut down it means I'm even less likely to ask further questions.

Management at work have been very understanding though. I wanted to let them know what happened on Saturday because the intense pain just came completely out of the blue and it's made me feel paranoid about it happening again soo I wanted them to be aware just in case it impacts on my work.

I received an e-mail from my direct line manager this morning and she was very sympathetic and shared her own experiences. That's one thing that has been a balm. Not just over the last few days, but the last few years really. I've lost count of the number of people that have reached out to me and talked about their experiences and showed solidarity with me.

It really drives it home though how bad medical misogyny still is and how common experiences like mine, and worse, are.

It's not reassuring to know that the whole system is set up to be dismissive and women are being left in considerable pain and discomfort daily.

I didn't want this post to be negative. The whole purpose of this blog was to put a quirky spin on my experiences, but today I'm just allowing myself to feel all my feelings. It's the best way I think I will eventually move on and get back on a more even keel mentally.

Right now, I don't feel very optimistic. It still feels like the door is closed to me but I'll keep resting and recharging to try again and hope that the door might open for me next time.