'M.E. myself and I' by Anna Redshaw

TLDR (too long; didn’t/don’t read)

I was seen by a gynaecologist on Monday. No infection found, the coil was where it should be, and no explanation was given/found for my symptoms over the last few days, other than the implication that I manifested them.

Background

I am very fortunate that I don’t need regular medical appointments.

Well, I’m sure I could visit my GP more frequently for the myriad of symptoms that plague me daily. But what I mean is that I have the good fortunate of being able to muddle through with just an annual prescription check, because I don’t need medical intervention very often. I learnt a long time ago that, with M.E., test results come back clear and that’s there’s little anyone can do, or indeed will care to do.

I haven’t had a referral for M.E. related symptoms since the Period Paralysis tests in 2016. But in 2021 I got a referral to Gynaecology after what I can only describe as absolutely ridiculous periods.

My referral to Gynaecology resulted in a diagnosis of Adenomyosis. Adenomyosis is where the lining of the womb starts growing inside the muscle wall of the womb.

I’ve never done too well menstrual-cycle wise. I have PreMenstrual Dysphoric Disorder (PMDD), could only ever have the progesterone-only pill due to other health issues, and had a 60 day menstrual cycle at the time of Adeno diagnosis.

The only guaranteed treatment for this condition is a hysterectomy. As someone who has long since known they wouldn’t be a parent, and as someone who has counselling to come to terms with this fact, my GP saw no reason why I wouldn’t be a good candidate for surgery. But my gynaecologist disagreed due to my very limited mobility as a result of M.E. (I have friends with severer forms of M.E. who have had successful hysterectomies but my gynaecologist wouldn’t budge).

The mirena coil was my only option. I had never wanted one, so I think it speaks to how desperate I was for relief that I agreed to have one inserted there and then.

Feeling ‘off’

I felt at the end of last week, that it might have dislodged itself from its position. This does happen despite what I was told. Infection and perforation seem surprisingly common based on chats I’ve had online over the weekend.

The pain (something I live with now because I have adenomyosis) ramped up! My legs were numb, I was incredibly lightheaded, and my uterus started contracting with great enthusiasm just as it did in the days, weeks, and months after the coil was fitted into My Wretched Uterus. I could feel more of the coil threads than I had before. I’d been told, and had read repeatedly, that I should seek medical attention if this occurred.

Easier said than done in Tory Britain but we’ll skip over that bit. If you follow me on social media you may have seen my Stories from Friday.

Seeing a specialist

I saw a gynaecologist yesterday (Monday) for increased pain, increased discomfort, increased swelling, and changes to my mirena coil threads. The gynae I was seen by in 2022 got his secretary to arrange an appointment for me with a colleague of his in the Emergency Gynaecology Unit. I was incredibly grateful!

“So you think something is wrong?”

I explained the situation. His response wasn’t the best.

“When we get these ideas in our heads, we can’t seem to shift them”. I lost count of how many times he said this during my appointment.

The gynaecologist’s take in the situation without having examined me

I can’t say what the intent or intended tone of that repeated sentence was. But every time it landed it sounded patronising and condescending.

This is why I would rather suffer in silence, and damn the consequences; a truly dangerous way to live. To have medical professionals belittle you and make you feel like you are wasting everyone’s time. This is why I so rarely seek medical help.

He was thorough though. The urine sample showed no signs of infection, ultrasound was clear and explained carefully and clearly. The internal examination did indeed show that the threads of the coil were three times longer than they’d been/should be. No explanation was given for the increase in pain, discomfort or cramping.I

I would like to request a medal for not shouting “I told you so” at him, when it was indeed confirmed that the threads were much longer and had been causing irritation.

In the end, the gynaecologist was more concerned and more interested in the fact that I have a mobility aid. “But what’s wrong with you?” “Do you have children then?” “Do you work?” His parting words were again to repeat his sentence about how “we” can get these things into our heads…

When I’m feeling ‘well enough’ to, I can advocate for myself. I repeatedly corrected him, saying that actually I had been able to keep myself calm and distracted as best as possible despite the pain making it tricky to even move.

Medical gaslighting

This experience is not uncommon. These will be issues and feelings my friends here know only too well. The emotional and mental toll of daring to ask for help is the very reason I so rarely do. That in itself is a privilege. I have friends who have to see doctors/nurses for catheter changes, or feeding tube issues, who cannot avoid medical professionals like I try to.

When your function, capacity and energy is so precious it’s a sucker punch to have it spent on experiences like this that offer little more than a slither of peace of mind.

Perhaps it’s a case of more fool me for thinking something would show up or something could be done. It’s left me doubting whether I was/am being dramatic, or whether I’m imagining things.

Dusting myself off

But you know what? I will not be defeated by a man who knows nothing of my life, my body, my mindset, or what it is to live in a disabled and chronically ill body. Something is off and something had changed with the coil (the threads had become so long they needed cutting to prevent further issue).

It is reassuring to have seen the coil is where it should be so we know there are no major changes or issues there.

Somehow, as usual, we rise after each of these unsavoury encounters.