Let's share our endometriosis journey together

[Moonbyul13]

I've been experiencing very painful periods and heavy bleeding since I was 9. Since those who have endometriosis are minority group here, so there aren't many doctors that specialise in endometriosis.

I've been going through harsh judgement even from my doctors that I'm seeing at gynae. Telling me off that I'm obese and have to get married soon so it will reduce my symptoms. I was mistreated severely by the doctors whenever I needed day off because I'm frequently sick and bedridden everytime I'm having my period.

From being called a liar because they think I forged a document saying that I have endometriosis because they think I'm too lazy to go to work to saying that I'm being very dramatic and just making excuses.

So far only 2 doctors that help me realise that my experience isn't my fault and there's a reason to why I have all of these symptoms. However, until now, everytime I went to gynae, I wasn't given enough information on my endo and the latest treatment the doctor suggests was to see neurologist to cut my nerve endings towards my uterus. This keeps on happening quite alot of times where the doctor just simply thinks that my case are just normal.

But my pain has been getting severe to the point everytime I had my period, I will end up in ER for stronger painkillers and nobody is explaining to me what's happening and why does this happen. And I also needed blood transfusion few times a year due to heavy bleeding. It has been exhausting journey for me so I hope I'm able to have a support group and understanding my own illness

[Bakewey]

have you now got a supportive doctor? If not, ask to be greeted to a different hospital.

It sounds like a tough journey.

Good luck in getting things sorted. 🍀

[Moonbyul13 in reply to Bakewey]

Hello bakewey 😊. It's so good to see your reply. I'm yet to find a good doctor since I don't have health insurance to help me for private hospital. So I've been seeing alot of gov doctors and it was quite confusing because they don't exactly tell me why this happens or why does my pain are getting stronger to the point I needed fentanyl to relieve my pain.

Thank you for your wonderful message dear. Hope you're doing well too

[Bakewey in reply to Moonbyul13]

I have copied this across from BloomingMarevllous as she wrote this to another person this week and her knowledge blew me away - lots of the advice may help you.

Hugs. It can feel like a horrendous space to be in with things mounted against you at times

Your biggest ally is your gut feeling and knowledge of your own body so trust it .

the pain is real. It needs appropriate care. Every pain killer has side effects that need to be managed and understood like paracetamol is rubbish for the liver function ( key for hormone detoxing), gut health & our Omega 3 levels but you may need it periodically. Opiod based pain killers are addictive, stop working well over time, they are constipating and stupefying. For living life they aren't a great answer frankly. Neither do they tackle centralised pain syndrome which often occurs with long term painful conditions. None of the above tackle nerve pain. Endo pain is often better coped with with the use of centralised pain killers like Nortriptyline but you would have to be carefully monitored. Endo tissue has more nerve fibres than surrounding tissue, it's often with reduced or no myelin sheath protection on those nerves either in that tissue . It is in part why this hurts so damn much. Low dose is effective here - even though the declared lowest effective dose is 10mg, I've found 5mg works a dream for me without all the heavy duty sleepiness and dopey brain that I get at 10mg. It's not 💯 but it's much more of a life & enables me to do the things I need to do to stay better. It's not a quick fix taking around 3 weeks to kick in properly. It can, if it suits you act as a mild antidepressant too which can be enormously helpful when illness causes such lowness. We've mostly all been in these dark awful places at times with this. Talk to your GP about pain management.

Medical appts take someone you trust with u. If you can take a man who is willing to be firm with the medic & say this isn't acceptable and it must be dealt with. As a well educated white woman who knows my medical shit & I can't get this misogynistic, patronising medical system to consistently, effectively deal with me unless they are being stared at by some burly bloke. It shouldn't be this way but it is- not the time to die on this hill.

As an alternative practitioner I saw many patients who would be pushed to despair & desperately throw anything at the situation to try to fix it - end up in a pickle not knowing what end was what. They ended up doing too much and trying too hard - managing the day to day becoming a full time occupation with minimal reward . They had done so much at once that the small improvements achieved they wouldn't know what had enabled it amongst all the stuff they'd thrown at it. Life became burdened by mad diets & bizarre habits. Utterly miserable. I've been on that train myself out of panic & fear, it's grim.

How to avoid this ? For the most part information and then move on the low hanging fruit bit by bit. Get yourself Katie Edmond's Heal Endo book; carefully take time to pick through, note what stands out for you and you query for yourself . Put your puzzle together which will differ from someone else's . You already have some information to start you off. You either don't tolerate synthetic progestins or natural progesterone itself; you maybe intolerant or resistant to it & they have different ways of tackling them or you may have issues elsewhere that means you don't clear it effectively. Progestins can interfere with thyroid function unlike the natural progesterones and it can make you feel appalling.

Write a massive list of all your signs & symptoms over time, age started if you can, scale of discomfort. Go through with highlighter pen and choose the worst ones. Back to the book, decide what you feel you might be able to tackle first / is the most obvious area for you. Then pop your symptoms list away for a bit.

Make a second list of areas you think are worth a crack at trying. Research it & trial it. This is a suck it & see - not responding to something gives as much useful info as positive responses. Pick one, MAX two, small things to change over a period of at least six weeks to 3 months. Choose the most obvious single moves & stick to it. Record weekly the scale of the pain on your symptoms list not more often. Don't be tempted to throw more at it in desperation- some of these things take 3 months to really kick in & you need clear answers not confusion. You have a life outside of this illness. However quiet and restful your life needs to be right now, you are not your illness. Review at trial end. E.g - it's easy to run a lactose tolerance test - Dr Google will tell you how, takes 48hrs & you should have a pretty good idea whether it might be an issue for you or not. Be clear about where you get/ don't get lactose in foods, it's not the same as general milk intolerance. If it shows up an initial improvement give it longer.

It's really key to know with dietary stuff it's often what we don't have in our diets rather than what we do that can be an issue so a wide ranging healthy diet is important. Doing a food diary for a week or so and write everything down ( complete list, no judging here!) can be useful. We can find ourselves sticking to favourites & short on the good stuff. You might see there's a lot of processed meals in there that are relatively low on nutrients you need. You are looking for balance here not punishment ! Food is not there to judge you but sustain you. Endo sufferers need more nutrient dense food to cope with the illness than your average .

Try Curable App to help manage the pain symptoms & the stress around it all. It's really helpful. Your GP can give you a free 6 week trial or you can sign yourself up for a free 2 week trial to see if it helps.

Stress in itself can promote the endo growth so it is essential to develop workable solutions for you. The stress of all of this is very real.

At the end of this you ought to come away with knowledge of what helps you manage that you can use alongside appropriate medical or surgical work done by the best qualified physicians not the local gynaecologist have a go Henry's. You really need to push to be seen by an endo specialist for proper MRI & ultrasound by those fully qualified to read & check for endo ( many aren't!!!) Look up your NICE guidelines for endo. Ensure your dr puts through the referral - check whether they have done a Ca125 test to flag up anything else or as an endo biomarker. ( raised Ca 125 can be indicative of active endo). Keep pushing them as this isn't normal . Find out who your local endo specialists are & ask to be referred.

by Blooming marvellous

Wishing you all the best.