I’m new here just looking for some advice

[Pumpkinspiced]

hey everyone

I have been suffering with pain for a long time now. And it’s starting to mentally affect me as not much has been done. I used to have really painful periods at school (which at the time I thought was normal and everyone had that ) so I kept quiet but it would always result in me being sent home. Getting older they are much worse and most times I have the thought that Id rather cut somewhere else on my body and my mind deal with that pain instead of my period pain. I wont eat much the first few days as it just comes back up and I walk around slightly hunched as I can barely keep myself up straight I get this aching pain in my legs and back and I get a really sharp dull aching sensation sometimes in my right shoulder/ collarbone area and I have noticed if I drink even the smallest amount it will bring on this pain much much worse sometimes I can feel the sensation almost spreading throughout my shoulder/ arm and all I’ve found that to ease this pain for me is something freezing cold being put on me whether it’s water or an ice pack or sometimes I’ve had to wrap in cold towels before does anyone else experience this ?

Some months I bleed in between periods and one month ended up having three periods after one week finished another started was a total nightmare. And the doctors blamed contraception even though I’m not taking any.

I tend to have pain during sex and it tends to be much worse after sex sometimes I may even bleed during or the following days after.

I’m currently not on any contraceptive pills as I’m worried because of how I felt on them in the past the last contraceptive I had was the implant and after three months I had to get it removed as after getting it I was bleeding quite a lot and it didn’t stop and I was being woke up in the middle of the night to really intense pain and I would get lots of headaches and once I got it removed that stopped. I’m still not taking anything but have been prescribed a combined pill rigevidon. Which I’m still very scared about taking.

I had my first ultrasound scan last year and they said I had a fluid extending into the right uterine adnexa (ovaries and fallopian tubes)that blocked them from reading the scan and didnt tell me much more than that. And haven’t had anything else done apart from examinations when I go and see the doctor which again they say that’s it looks ok but it most definitely doesn’t feel it.

I lost my job this year due to all of this ,being in pain a lot not being able to do much,but still trying to push on, and having a lot of sick days and being sent home most days. I was a really bad way at work and lost a lot of weight due to not eating great as it was causing pain and still pushing on at work. this made me get to a point where I felt very alone very depressed and like I had no help from anyone and I’ve still been struggling to find help or solutions or someone to talk to so really I’m just here for a little help with finding other home remedies and methods to try and help with day to day life and dealing with this.

[BloomingMarvellous]

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 . Your next best friend is being kind to yourself which can be pretty hard when it can feel like your body is playing hardball with you. Reach out, even if it's to the Samaritans , when it gets too much rather than hurting yourself to cope. Keeping it close to you trying to cope and "being brave" isn't the answer here. There are no prizes for martyrs in this place.

Your depression, 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 with your history of depression & cutting with it's introduction. 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.

[Bakewey]

I agree with Bloomingmarvellous, wow, she knows her stuff!

I’d like to add, I think it’s imperative that you get some support for your mental wellbeing urgently. Hopefully, once you are feeling mentally better, the fight to get the support you need will not be so daunting. Your story will resonate with many of us as it is difficult to get heard.

Take care of yourself 🌺