How is it still an acceptable comment?

[LuceRM]

Hi there! Hope you’re all doing ok. I went to the doctors this week to discuss new pain medication - I’ve exhausted the options over the last 6 years but have now been told to stop everything and take one tramadol at night as well as paracetamol and ibuprofen. I explained that the paracetamol & ibuprofen are like sweets to me and do absolutely nothing. I was diagnosed with Endo in 2017 and Adenomyosis in 2020. I have also been recently diagnosed with Hypermobility Syndrome. There’s a lot going on at the moment. I’m already doing physio, I’m under a musculoskeletal consultant and of course, my beloved Gynae consultant of many years. All three of those practitioners are doing everything they can (for the most part) but this damn GP dumbed everything down for me (despite me being a medical professional myself) and just told me there is “nothing she can do” and “have I thought about losing weight?”. I’m feeling very overwhelmed right now due to the response. Any advice on how to overcome this experience? It just makes me want to curl up and cry and reminds me of the many years I spent trying to fight for a diagnosis.

[Missy100]

I'm so sorry to hear of your experience, Luce.

I would request to be referred to a pain clinic. When you speak to them stress the alternative methods you use to treat your pain and that there are an ongoing physical medical conditions causing the pain. I found being open to implementing alternative coping methods a huge help in justifying the prescription pain medication. Also the ongoing impact the pain has had in my day to day life and how much it has stolen from me iro things I can no longer do as a result.

Over all there seems to be a mixed opinion about what sort of pain relief is appropriate and it has led to a lot of GPs leaving their patients in agony for fear of making an error in judgement in the opposite direction - which toes the line of are they actually causing more harm than good.

I've found that having the support of the pain clinic and a gynaecology consultant (who have both supported the medication I am prescribed) have certainly helped.

Do not tone down the specifics of the pain you experience and how it impacts your daily life. Stress the nonprescription coping methods you use/have tried and where you are in your journey for addressing your medical conditions with your specialist. Things like tens machines, meditation, heat (bags/pads/hotwater bottle), physiotherapy/targeted yoga/targeted stretching/, even distraction coping methods like apps designed to help you relax, or distract you such as mini timed games. Laying in a dark room with soundtracks meant to relax you. They are all things I regularly use along side prescription medication. This isn't a suggestion that they will work, are new coping strategies, or will replace you prescription pain relief - I am only listing them as examples you may find useful when discussing your own experience with a professional, as sometimes it is easy to forget what we have tried.

The pain team advised me that taking certain pain relief medication at the same time every day trains your body to expect it, and over all it becomes less effective. They supported only taking it in response to the pain levels I am in at the time and changing when I take it each time (iro Tramadol). I also take Metformin and Gabapentin to address pain, and I take these as prescribed, daily.

I really hope you find relief from your pain. You deserve to be heard and have your experience taken into account. As you no doubt already realise, no one knows your body better than you. Sometimes the process of speaking up for ourselves and not being heard can beat a person down, so it can be helpful to be reminded by someone else that we matter. You deserve to be listened to and heard with respect.

Good luck!

[LuceRM in reply to Missy100]

Thank you for this comment. I really appreciate the time you’ve taken to write this huge reply! I have a TENS machine which I adore and use it when I am at work (I have a relatively active job) and during flare ups. I am also no stranger to hot water bottles, ibuprofen gels, physiotherapist and accupuncture. I was under the pain clinic but the gentleman I saw there wasn’t helpful and my referral fell through after 3 appointments. Perhaps I should request to go back?

[Missy100 in reply to LuceRM]

That all depends on what you mean by he was unhelpful. Was he unable to offer any other pain relief options or was he unwilling to listen and offer potentially helpful suggestions/support? They tend to discharge you once they have covered any bases/avenues to open space for the next person on their waiting list, however if he wasn't listening (and hearing you) and offering supportive care in response Is request to see an alternative professional.

[LuceRM in reply to Missy100]

He prescribed Tapentadol, which sort of worked but then didn’t get back in contact with a further appointment. I tried to get in contact and was told I would be contacted by the pain team again and never heard anything

[Missy100 in reply to LuceRM]

I am not familiar with Tapentadol, but from what I have read it is considered to be a stronger opiod medication that Tramadol.

It sounds like it is time to follow up with the pain clinic yourself. There is a chance you fell through the cracks or may have even been accidentally discharged. If that is the case, you may need to be re-referred.

[LisaAmazona]

Hi Luce-- I was doing some digging yesterday around my daughter's possible endo. She also has POTS and some hypermobility (though not diagnosed with EDS). I had a poke around DINET, the dysautonomia forum, and someone mentioned that there's a connection between endometriosis and MCAS (mast cell activation syndrome). MCAS is also strongly associated with POTS and EDS (ehlers-danlos.com/2017-eds-.... I found quite a few papers proposing the treatment of endo using some of the MCAS meds like ketotifen or sodium cromoglycate. emjreviews.com/reproductive...

This could perhaps be a route to take as an add-on to pain meds. Might reduce inflammation and pain in a whole different way without having to resort to upping and upping the analgesic ante.

Just a thought! Good luck.

[LuceRM in reply to LisaAmazona]

Wow! Thank you for this. I’ll certainly look into it!

[Lindle]

I know you like your gynaecologist but do they have the right level of expertise with endo? Were you diagnosed in 2017 by a lap or scan and do you know what stage you were?

[LuceRM in reply to Lindle]

Hey there! My Gynaecologist is the lead for Endo at my hospital! I was diagnosed with stage 1 in 2017 by a different gynaecologist but 2018 I was diagnosed with stage 2 by my now current gynaecologist. He then diagnosed me with Adenomyosis via transvaginal ultrasound in 2021 too

[Lindle in reply to LuceRM]

It is well recognised that peritoneal endo can cause a lot of pain but as you have been diagnosed with mild endo for a long time I should be vigilant to symptoms that could suggest that it has become deep such as lower back/leg pain (often the left), pain outside the period, bowel/ problems outside the period sometimes with blood, shooting pains up vagina/bottom, trouble walking/sitting. Endo doesn't always progress but often it does which would cause gradually worsening and different pains. With adeno as well there can be a cross over of symptoms which can make it difficult to identify what is causing what.

I hope you can get some relief soon.

[Arty09]

Just wanted to say I had a similar experience with a gp this week and found it very triggering/upsetting too. All to easy for them sometimes to ignore everything you say and use the old ‘lose some weight’ card, just do some exercise, when I have days I can barely walk never mind anything else. I wonder if they just default to that when they know they have nothing else to offer….proper expertise in endometriosis care is so hard to find. Xx