My uterus controls my life. My meds make the doctors listen.

My uterus owns me. It has free rein over my body without the regulatory body of doctor implanted hormones.

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My uterus owns me. It has free rein over my body without the regulatory body of doctor implanted hormones. Though, that’s not for the lack of trying.

During the run-up to my period, I get severe PMS, to the point where my anxiety is up, and I’m forever paranoid and worried about my partner and myself leaving the house. At random intervals, my brain will interrupt the regularly scheduled programming to inform me of all the horrific things that could happen to try partner whilst he is still driving. But, soon as my period hits, it all goes away. My brain reverts to slightly anxious, and occasionally sad, though generally pretty okay all things considering. It’s like clockwork … if said clock occasionally ran 10 late, and occasionally stopped for extremely stressful events.

At the start of my latest medical mystery my symptoms became worse after ovulation, then terrible right before my period, and as soon as it did the symptoms – most of them would vanish. A year or so later, and there’s definitely a noticeable increase in the pain, swelling, and redness post-ovulation, which improves dramatically at the end of my period. And yet, the doctors refuse to admit that there’s a correlation.

For years I’ve been trying to convince my doctor and my gynecologist that my period is connected to my health, or is at least influencing everything. The last gynaecologist said it’s ‘unlikely’ and ‘rare’. I’m susceptible to my hormones to the point that the slightest change makes a big impact, but of course, reproductive medicine is far behind when it comes to listening to patients. How were also of the notion that hormones are of little to no consequence is astounding to me. It doesn’t take much for the body to become out of balance, so why do doctors not address the issue when it comes to hormones? Tests can only tell you so much, especially when they’re individualised and only looking at one symptom at a time.

I am an undiagnosed, complex case, and the doctors – who are just as confused as I am, refuse to explore avenues that might reveal more information as to the cause of my problem, and thus a better treatment plan.

However, as of last year, there is a way I can get some doctors to listen … or at least partially listen. I am on strong painkillers for pain, both maintenance and breakthrough, painkillers the doctors don’t like me being on. I have to talk about taking opioids for breakthrough pain to get them to listen to me. My pain has to be validated by something they wish to get me off before they will listen. What does that say about medicine?

My doctors are far more likely to accept my cycle might be influencing my pain when I like it to my medication, even though this happens every damn month. They’re only just accepting it because most don’t approve of my pain meds. They are far more concerned about my opioid use – which is strictly controlled by them, then listening to their patient.

Due to what I’ve affectionately called my ‘pain cycle’ I have to plan my month, and my appointments around my period, and thus my the repercussions on my feet. I know that if I go out more when I’m on my period it’s going to hurt a hell of a lot more. I know that I won’t be productive for at least two weeks of the month, feel horrible and lethargic, but I also know that I will have at least a week where I want to tidy everything (or at least try to), and another week where I can do some work. Sure, there are anomalies, and my stress level does influence my pain, but it’s been nearly 2 years with this pattern, and still, doctors think the link is tedious at best.

I used to think I was lazy, or that there might be something more going on with my mental health, but then I realised it was connected to my cycle. Every single therapy session I used to talk about my cycle because it has that much of an influence on me.

Just because it happens every month, doesn’t mean something is medically ‘normal’. Just because a doctor dismisses you doesn’t mean your fears are unfounded.

When people ask me about my health, and it’s a deeper conversation than the casual ‘how are you’, I tell them. I tell them all about my unusual case, and I tell them about how I think my cycle is connected.

For too long there’s been a taboo on talking about periods, hormones, uterus, and more, and that’s never going to change unless we take steps to change that.

Over the next month, I have 4 critical appointments for my health, and I will present this to all of them because maybe I’ll find that one doctor that will listen. A lot of the time doctors minimise reproductive, and hormonal health because their answer is generally birth control, as that what’s they’ve been taught, but what if it’s not the answer. What if – shockingly, the patient knows their body better, and birth control is just masking the problem instead of fixing it – or causing more problems.

I feel I need to tack on that I’m not anti-birth control! I have a complicated relationship with it, but I’ve gone to a lot of appointments where instead of investigative measures it’s just ‘birth control’, but that’s a post for another time.

Since you all now know I’m on opioids, and everyone has their own opinion about this. To save time, no the opioids I’m on do not make me feel high, yes opioids are right for me, yes I am looking into other options with my doctors, and no I don’t need to do more yoga, drink green tea, or stand upside down on my head, chanting self-affirmations, wearing essential oils, whilst inhaling the latest ‘healing’ incense.Menstruation Matters

 

2 Comments

  1. I too am taking opioids that the drs are not keen on! Like you say it’s only when you are taking stupidly strong pain meds that they are willing to listen.

    I had issues with my menstrual cycle for a few years (essentially I was bleeding for about 21 days out of 28) in addition to my chronic pain. Whenever I was bleeding the pain was higher.

    I was told to loose weight and my cycle would improve as being overweight would affect my cycle. (Bollocks!)

    They asked me to try taking various contraceptive pills. They didn’t help and came with their own issues. This was also frustrating as I had been sterilised thinking I would be able to avoid taking medications!

    They asked me to try a hormone infused coil. That made everything worse. My uterus did not like having things inside it!

    I was offered a hysterectomy- if I lost weight.

    I was offered an ablation which the royal college of gynaecologists had done a research paper on which concluded that it was an ineffective treatment for painful and irregular periods in women under 55. Their own paper further said that when the patients primary issue was pain the ablation tended to increase the pain they experienced. So I refused this as a treatment option on the grounds that I had quite enough pain thank you very much!

    I suffered this for a further 2 years before asking to see a different consultant. This time she listened to my history and said what would you like to do?

    I said “I want a hysterectomy, I don’t need the plumbing anymore, get rid of it!”

    She did the operation a few weeks later and honestly it’s been the best thing ever! After the recover period, I had less pain and I was able to lose weight!

    I hope one of your drs actually listened to you….

    • This makes me so mad. Whilst I don’t have the complexities you have, I have given up trying to get doctors to listen to me when it comes down to my cycle. The last one told me to go back on the Mirena even though it caused so much pain and put my mental health in a precarious state.

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