I don't know how long I have been dealing with the symptoms of my conditions. I remembered recently that I had been to the doctors a lot during my teens regarding mystery abdominal pains but nothing ever came of it.
I consider myself lucky though. It can take 7-10 years to get a diagnosis for Endometriosis, which is pretty disheartening when you consider that more than 1 in 10 suffer with this debilitating condition.
It was towards the end of 2015 that I saw a doctor about my pelvic pain. He then sent me to another doctor to have swabs taken. I think she was the first one to suggest the possibility of Endometriosis. Another thing I remember quite vividly about that appointment is that she gave me a very thorough prodding down there and when she was taking swabs she remarked on my narrow cervix.
My swabs came back clear so I was referred to a gynaecologist. There turned out to be a big mix up though because I turned up at the clinic and there was no record of my appointment, even though I had electronic proof of it. Luckily I was still seen but I had to wait for a long time.
As it turns out, I wasn't seeing a gynaecologist either. She was a GP with some extra qualifications in that field, so while she thought it could be Endometriosis, which can only be diagnosed by laparoscopy, I would need to see a gynaecologist to get a referral for the procedure. She was very nice but the appointment all seemed a bit pointless.
I was signed off work for the first time with the pelvic pain shortly after that and my wait to see a gynaecologist began. I eventually got an appointment but it was cancelled as the gynaecologist was unavailable. I can't remember the reason why.
HR contacted me and asked if I was on their private medical scheme. I had missed the deadline for signing up to it while I was out of the office but they got me onto it and an appointment with a consultant followed quickly.
That appointment was the turning point for me. The consultant was lovely and made me feel validated. She said she thought I had probably been suffering with symptoms even longer than I thought. She diagnosed me with Vestibulitis that day and prescribed me Amitriptyline to help and I was put down to have a laparoscopy.
Sure enough, the laparoscopy revealed Endometriosis and that I had a tilted uterus.
Go home, womb! You're drunk!
A few months later and I was still in pain so another laparoscopy followed a couple of years later which I've talked about previously where I received my Pelvic Venous Congestion Syndrome diagnosis.
Being a chronic illness sufferer, I've had a lot of conversations with lots of different doctors. At my GP surgery you have to call first thing in the morning for an appointment and get an appointment with whichever doctors are available. I consider myself lucky if I discover it's a doctor I've spoken with before. I have two favourites.
Every time I have discussed struggling with my symptoms or low mood they have been kind and sympathetic and let me talk. That means so much. It's never my first rodeo with chronic illness, so I'm so grateful when I speak to a doctor that gets it. Sometimes just being able to have a bit of a rant about it, knowing there's not going to be a silver bullet, means everything at that moment. Just feeling seen and heard.
During this recent spate of time off work, I've been calling the doctors on a fortnightly basis for a new medical certificate. One of my favourite doctors has been the one to call me on most of those occasions. She's incredibly lovely and her voice is really soothing and caring.
I told her I was still struggling with low mood and she was really sympathetic and insightful about how chronic illness symptoms can manifest in different ways. She really understood the balancing act of managing chronic illness symptoms and the side effects of the medication.
For example, some of the pain medication I take can cause constipation. I have to be careful with that because, well, constipation isn't fun for a start, but if it gets really bad, it can cause my pelvic pain to get worse.
The last time I spoke with her, she offered me stronger morphine. I'm currently on oral morphine but apparently I can have it stronger in patch or pill form. I admitted that I had been a bit shy with taking my oral morphine because I was worried about it being addictive, but she was encouraging about taking it when I need it as long as I don't exceed the recommended dosage.
If I am going to surrender to pain relief more though then she'll need to prescribe a daily laxative to keep me regular. I definitely don't need more problems in that area.
We'll see how it goes!
In my next post I will continue with the theme of support. Nope not spandex, friendship!
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