If you don't take any painkillers, does i... - Endometriosis UK

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If you don't take any painkillers, does it make my body/brain damage?

shukudai profile image
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It is strange question. I know. I don't think I can go without any painkillers now. However, when I keep taking painkillers and when those painkillers are getting stronger I feel a bit scary that if they get my body/brain damage. But on the other hand, would these severe pain we have, does these damage my body/brain? When I have been attacked by the pain, I feel so exhausted and I feel so weak.

I am taking Naproxen or Diclofenac and Co-codamol and Buscopan at the moment. But not all my pain does not go away completely. GP said all they can give me is Tramadol but it space me out and I can't go to work with it as I have to drive to work. I don't know what else I can take.

I am just wondering is that "Pain" or "Strong Medicine", which is bad for body/brain?

Maybe I am just getting silly as I have been taking many tablet last two weeks... I feel guilty to myself that I had to take so many chemicals.

If you feel like to reply, thanks:)

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21 Replies
gemnicoler profile image
gemnicoler

Hi there! Try not to stress yourself out too much as from my experience that is the worst thing for pain! Unfortunately it is proven that taking painkillers for a long period of time isn't really any good for your system, but if you try to keep fit and look after yourself and strictly follow your G.Ps instructions, then im sure you will remain safe and healthy. Be careful because some painkillers like co codomal are addictive and may people with long term illness see them as a crutch when they are down and depressed about being ill. If your really concerned about the amount your taking don't just stop, go to your G.P and express your worry. If you are still getting pain with all those pills, you mighy need further investigation rather than just another pill to mask the pain. Stay strong and don't panic. Good luck :)

shukudai profile image
shukudai in reply to gemnicoler

Thanks gemnicoler, I take Co-codamol as little as possible but it is getting more and more as the time goes on. Also as I have a lot of adhesion codine makes me constipated and that is terrible. I don't want to take constipation tablets on top of these! so I try dark chocolate which works for me and some Chinese tea and so on. I take migraine preventative tablets so I have more than those tablets every day.

When I go to GP and say my painkiller doesn't work anymore, they just give me stronger one. I ask about side effect and show concern they say there isn't any other tablets to give me!:(

I am on the waiting list for the lap since October. I have consultation in a few weeks. My period started now so when this period finishes by next week I should be a bit better.

You take care too.

xxx

curlyjo profile image
curlyjo

Hi Shukudai, have you researched any of your painkillers on line? Some are anti-inflammatories and will therefore do the job of taking down the inflammation, while others are pain blockers; they are telling your brain not to feel the pain. As you have found out though, they all have side effects and you are concerned about the effects on your body and brain. When I started getting constant pain from cysts back in November (I'm now about to have them removed surgically) NOTHING would hit the pain. I tried co codomal, naproxen etc and in the end the only thing that stopped the pain was taking a combination of tramadol, mefanamic acid and paracetemol (and omepraxole to protect my tummy with the mefanic acid). But they only work if you take what your body needs. Addiction will only occur if you're taking more than you need or taking them for the wrong reasons. Also taking the higher pain killers can put strain on your liver so I take supplements like milk thistle (you can get it in Tesco) and don't drink alcohol. The liver is under more strain than usual so you don't want to give it even more of a job. On top of that I have also gone on the endometriosis diet which is anti-inflammatory. This has also helped me not get so constipated (another side effect from some painkillers) and I feel I'm also doing something other than taking pills to help me get through this painful time. I have spoken extensively to my pharmacist about all of the above, and if you wanted to talk to yours too, they could also put your mind at rest about how to protect your body while it's taking these necessary medications. Like you said, you need to keep working. I'm a school teacher and when I was in the kind of pain you can't move from my doctor signed me off for two weeks while I experimented with a combination that worked for me. I had to persist with the tramadol; it does make you spaced out at first, but now it has the opposite effect. So it may be worth trying some different combinations with your doctor's supervision and finding what works for you. I've managed to keep going at work and the kids are relieved their teacher's still standing (well just!) and soon the painkilling days will be over. So do persist and try not to worry. If you have the right information about these drugs by talking to medical professionals then hopefully you will know how to manage them without getting anxious. All the best with your treatment!

shukudai profile image
shukudai in reply to curlyjo

Hi curlyjo, I tried mefanamic acid years back but too much side effects and I was still in pain. You managed to Tramadol get to work. That is good. I was given a normal Tramadol long time back and the next day I took the tablet I couldn't get up and go to work. A few months ago I tried a slow release dose of Tramadol, I took on Friday night at the free weekend. I was very drowsy and couldn't do very much and as it was slow release the pain was high. I would have needed a week off to start with it which is not possible as I had to go to work and look after my family. It was a bit disappointing as I found Tramadol did take away pain as when I had to come off at the end of the weekend I was in pain and fainted when the effect went.

I am interested in the Endo diet but I have to cook for my son (5) and husband as well. I can't cook two different kind of meal every time. How do you manage? Do you eat different food?

I feel for you that you have to look after many kids and you got endo. It is tough job! Take care.xxx

curlyjo profile image
curlyjo in reply to shukudai

Hi Shukudai,

I suppose i'm lucky in that i'm only feeding me cos I live on my own so switching diets was relatively easy. But it's a diet which your family would, I think, enjoy, too and it's incredibly healthy. I started by looking at the foods you couldn't eat and most of these can be substituted. For instance you can't eat wheat and dairy, but there are so many nice substitutes in the 'free from' range in supermarkets. It does let you have Organic eggs, so I still use them, but use coconut milk mostly. Another thing is sugar. This was the hardest to eliminate, but organic honey is allowed, so again, you can easily substitute. The hardest thing for me was the alcohol. You can only drink a little red wine on the endo diet, and I love white, but this has probably been good for me. I substitute red meat by eating Turkey mince and now search out yummy fish recipes; Asian Chowder by Nigella is my favourite. I've actually become far more in to healthy eating since starting this diet and am probably doing my body a whole lot of good too. I've also found I can eat a lot more and not gain any weight which is quite nice!

I know it would be much harder making the change having a family too, but perhaps they would go along with it if they saw it helped you? Back in the 70s my mum had cancer and as a child we changed our diet over night for her health so I suppose I'm used to the idea and the benefits of healthy eating. I do wish you all the best with this though and hope you find what works for you with medications as well as diet. And hope you see some really changes this year!

shukudai profile image
shukudai in reply to curlyjo

Hi curlyjo, Thanks again. I went to the Endo diet website. I don't think I can follow strictly from the beginning but I could try some. Fortunately I don't/can't drink at all so I cleared one already:). I drink a loads of green tea and coffee and tea in my house are all decaff. I eat a lot of fish already, I love Mackerel.

The difficult bits would be mostly wheat, dairy, sugar and soy. I think I try to reduce these for a month and see how it goes.

When I get constipate (after taking co-codamol) I have to eat chocolate. For me only chocolate works for constipation! not peppermint for me!! My 5 years old son looks after me very well when I am ill but I can't see he would be giving up his cake for me though....:)

Mturleykeeble profile image
Mturleykeeble

Hiya, I have been on this list of medication since 2009 and I understand where you are coming from. (I live with chronic pain due to many conditions I live with)

Lansoprazole 30mg gastro-resistant capsules

Paracetamol Caplets 500 mg

Pregabalin 75mg capsules

However something to consider, I attend Psychologist. It does not work for everyone. You could discuss this with your consultant or GP at your next appointment. CBT is something else that could also work again discuss with your GP or consultant. Good lunch.

All opinions are genuinely my own.

shukudai profile image
shukudai in reply to Mturleykeeble

Hi Mturleykeeble,

I have Lansoprazole but 15mg a day. I sometime it wasn't working very much. I didn't know you could have higher dose. I will ask my doctor.

I have my pelvic pain over 10 years and I started with just 1 Paracetamol 10 years ago with just period pain. And soon it became 2 Paracetamols and that with Ibuprofen and otc med wasn't enough. 10 years ago I was registered with a rubbish GP surgery and they just left me untreated. When I moved to my current house then I changed to my GP then I got some medications. I have tried loads of loads of tablets last 10 years.

As now Naproxen or Diclofenac + Co-codamol is not taking severe pain away from me, I need to talk to GP soon. I probably need to tell my GP that I sometime feel I want to throw away all the tablets as they are not working and throw away myself too. I put myself that is PMT as it fall those time and my pain comes 10 days before my period starts.

Thanks xxx

cupcakegirl profile image
cupcakegirl

The short answer is: both are damaging to your body.

Before and after my diagnosis, my pain wasn't properly controlled. I was regularly passing out from pain, going to hospital in an ambulance etc.

Later on when my pain was properly medicated, my pain specialist told me that my nerves have been irreparably damaged by years of chronic pain. Now, even if there's no stimulus, they send pain signals anyway. That can't be fixed and would have been avoided if I'd been diagnosed earlier and given proper pain relief.

The list of meds you're on isn't that serious in the grand scheme of things, trust me. The anti inflammatory is the one most likely to cause you problems as they damage your stomach - I would ask for omeprazole which protects your stomach.

If normal tramadol affects you too badly, you could try slow release tramadol with co-codamol for breakthrough pain. Although codeine and tramadol are synthetic versions of opiates, I personally think they're much more damaging with worse side effects than morphine etc. Tramadol gave me gallstones which caused a very serious infection and required major surgery.

I've been on morphine or an equivalent for ten years and it hasn't done me any damage (yet, touch wood) - I've been on scarily high doses too, and nothing bad so far. Personally I think the best treatment option for someone in your situation is a low dose of slow release morphine which should take care of your daily pain without any trouble, with a very small amount of liquid morphine for breakthrough pain. With this you may be able to stop the anti inflammatory, and you can adjust the dose of the liquid by tiny increments so you can take a very low dose. Getting your doctor to prescribe it may be a challenge. Ask fit a referral to a pain specialist.

X

shukudai profile image
shukudai in reply to cupcakegirl

Hi cupcakegirl,

When I wake up from my very first lap my period pain started at same time and I was worst pain ever. In the recovery room I was given Morphine shots (more than once I think) but pain didn't go away and they told me they can't give me anymore otherwise I would stop breathing. My blood pressure went down to 30's and they gave me Buscopan shot (I think) and I was getting calm. So I am not sure if Morphine works for my pain.

My husband had an operation a few years ago and he had a Morphine drip after the op and he said the morphine drip works almost instantly. I don't know why it didn't work for me.

When I listed the tablets I put just painkilling list I do take Lansoplazole 15mg a day for stomach protection. I take diclofenac from a few days before my period when my chest pain starts which ease a bit.

A few months ago I tried a slow release Tramadol but it still space me out. I tried to half the tablet with a knife to expect half the side effect but it didn't work for pain killing:( of course. I am on the waiting list for a lap so I have to hang on until then. If the pain doesn't go away I will ask for a pain specialist.

Thanks xxx

cupcakegirl profile image
cupcakegirl in reply to shukudai

It may have been that they couldn't give you as much morphine as you needed as your BP was already low. There is no maximum dose of morphine, it depends on your tolerance and other factors - I used to take 1,000mg a day which could kill someone who wasn't used to it.

For me personally, because I'm so tolerant, I don't get any relief from IV morphine post op until they've given me a huge amount, then it will start to work. If the pain is very very bad, it will take even more.

If tramadol works for your pain but makes you spaced out, I'd recommend trying morphine instead at a low dose and increasing it - becaae it's a liquid, you can take a tiny amount as gradually increase it so your body gets used to it. The drowsiness etc with these drugs does go away with ongoing use but it can take time - sadly it's in a toss up between the pain and the side effects. I remember regularly dozing off at my desk or on the sofa when I started. The huge doses I'm on now don't make me drowsy at all - not even a bit.

Whatever you take, it's best to start on a very low dose and gradually titrate up so you get to the lowest dose that works and minimise side effects. If you couple a slow release version with extra fast acting for breakthrough pain, plus anti inflammatories and possibly plus a drug for nerve pain (amitriptylene, duloxetine, pregabalin or gabapentin) you should find you're able to control the pain more easily. Sadly it does take a while to get used to them though.

If you don't want morphine (personally I find it much better than tramadol in terms of side effects etc) ask for soluble tramadol and start with dissolving just a bit of the tablet (or only drinking part of the solution!) so it's not as strong. X

shukudai profile image
shukudai in reply to cupcakegirl

Hi thanks again. Did the beginning of Morphine dose give you drowsy? I have to drive to work so it might be dangerous. How long did you need to get rid of the drowsiness?

I cut the slow release Tramadol tablet into half and took the 1/2 tablet but the pain didn't go away. The drowsiness was not unbearable though.

My max dose of Naproxen is not good enough this month so I need to do something for next month and I think I need to think about more Diclofenac and Tramadol. I think I need to talk to GP about Morphine. I have tried amitriptylene but my heart beat gone rapid so doctor stopped me and my pain didn't go away. My chest period pain is getting worse and that need stronger than stomach cramp.

How do you take Morphine? You said it is liquid. Do you drink it?

Take care xxx

cupcakegirl profile image
cupcakegirl in reply to shukudai

The type I'm talking about is called oramorph and you drink it - initially you could take a very small amount so that the drowsiness isn't too bad. This may not be enough to get rid of your pain but you can then gradually increase it so your body gets used to the side effects. I had the drowsiness for the first month or two but I didn't start low and then work up so you might find that better.

You can get endo in and around the lungs and endo can cause a collapsed lung - have they checked out your chest pain ?

shukudai profile image
shukudai in reply to cupcakegirl

I had really bad chest and back pain in December. I couldn't breath very much for about 5 minutes or so and the pain happened on Friday evening (one of the heavy bleeding day) and lasted all weekend. I didn't go to A&E as I thought I just have to wait for ages and they would just sent me home but now I thought I should have gone to checked out. I was a bit better by Monday so I left it to recover. It took a couple of week though. Then I got another severe chest pain (ovulation time).

GP said if I had this kind of chest pain next time I need to have X-ray. I got referral for Thorax but the appointment is in April. Although I am getting chest pain every period I haven't had really bad one like December so I hope I can manage it until then. If not I just get X-ray and see how it is. If it is a collapsed it should show it.

Thanks for the Morphine advise. I will note down and talk to GP next time.

take care.xxx

cupcakegirl profile image
cupcakegirl in reply to shukudai

There is a name for collapsed lung as a result of endo but can't remember the name now. Definitely get help if you have severe chest pain, you may need medical help ASAP x

shukudai profile image
shukudai in reply to cupcakegirl

Yes thanks. That December chest pain made me so scared about Endo. I want to think over the treatment from many way. One of the point was painkiller. If I have Endo in my chest or lung or somewhere around there and causing me problem, I need to take NSAIDs to get inflammation down. I can't get away with tablets...

Anyway it would be better than having that horrible chest pain which could leading up to a collapse.

xxx

Scooteeder profile image
Scooteeder

Hi,

Just read your question, and I do not think it is a silly one at all. I also have Endo, and agree that it is often difficult to manage daily without taking some form of Painkiller. I have taken everything from Ibuprofen, Paracetamol, Diclofenac, Mefenamic Acid, Tranexemic Acid, Co-codamol, Buscopan, Diazepam, Tramadol, Spasmonal to Oromprph. Yes... it's a pretty long list! Obviously, I wasn't taking them ALL that the same time. I tend to find I have to "experiment", and swap painkillers from time to time, as they no longer remain as effective.

Your experience is NOT unique, so please do not feel isolated or alone in what you are going through. There are those of us who can empathize.

Personally, I think it is perfectly natural to worry and to feel concerned when you have to take a lot of medication of any kind. Living daily with Endo can be a strain, and a challenge, anyway. It is certainly NOT a pleasant illness. Just having the pain, and other symptoms, can leave a person feeling worn out, "run down", stressed and very much overwhelmed. Add to that the pressure of trying to cope with the illness, and manage the symptoms...

It is not unusual to be concerned about taking lots of Painkillers. I sometimes I ask myself the same things that you do. I get concerned that my body would be unable to manage without the medication, and that the pain would be unbearable. I ask whether my body risks becoming tolerant to certain Painkillers, so that they are no longer effective. I wonder whether taking lots of Painkillers can be harmful, or do damage to my body - whether they can be toxic in any way. To me, these concerns are perfectly natural. After all, WE have illnesses that WE did not ask for, want or deserve... AND to cope WE have to take lots of medication. NOT something that most people would do, if they had a choice!

Personally (and this is just my opinion, so you are not obliged to act on it), I feel it might be a good idea to ask your G.P. whether you could be referred to a Pain Management Service. This could be helpful, as services such as these work regularly with people who experience chronic pain. The purpose of a Pain Management Service is to assess your pain, how it affects you, what causes it, how it can be treated and managed. many services are multidisciplinary, in that they include Nurses, Physios or Occupational Therapists, Pharmacists, Social Workers, Psychologists... they can evaluate your pain from all angles. They are also intended to help you to come up with practical safe and workable solutions to managing your pain. The Pharmacist, or Doctor might review your medication, and come up with suitable Painkillers for you to use. A Physio or O.T. might assess how your pain affects movement and activity; they could advise special exercises to do, to ease pain, or they might train you how to do certain things differently, so as to protect you from pain. The Psychologist might talk with you about the emotional effects of your pain; they could suggest relaxation or breathing exercises, or maybe treat you for stress brought on by living with Endo... they are there to listen to all your pain-related concerns.

I have been under the care of a Pain Management Service, and did find it helpful. They advised me about relaxation, as well as showed me things that I was doing daily that exacerbated my pain (simple things I had not even realised). They taught me to change the way I did some things (taking breaks during housework; crouching not bending; thinking about my posture; not always carrying my handbag over one shoulder as it puts strain on one side of my body). They recommended some Physio exercises to relax and stretch out painful areas (especially areas affected by old surgery, and adhesions). They encouraged me to attend Pilates (which I had been nervous about). They changed my medication when it was no longer as effective. They provided me with a TENS Machine. They gave me chance to talk about my concerns as to how I could manage my pain.

I would advise you to consider discussing a referral to Pain Management with your G.P. as

they could be of use to you. It's only a suggestion, and YOU must decide what it is that you think is for the best.

In the meantime, I wish you all the very best. I'm going to send you another reply, which contains a list of all the things I do to manage my Endo... it may be useless to you, but then again, it may contain some information and advice that helps. How YOU manage your Endo is YOUR choice - it is always best to deal with things in your own way, then YOU stay firmly in control. However, there are always plenty of things to consider...

Good luck.

Elaine Ellis.

Scooteeder profile image
Scooteeder

Hi again,

Here's the second response I promised. There just might be something useful...

Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

1. You NEED a good G.P. I cannot stress enough the importance of this! I know EXACTLY what you mean about G.P. services; where I live it is pretty much the same. You hardly ever get to see the same G.P. and I agree this is USELESS for people with chronic illnesses, who need consistent treatment and feedback. All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.

2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists London Area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Also, note down any mood changes, as you then have a record of when these occur, and whether it could be your Endo (periods) that cause them, or your medication.

6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort can help with mood swings. Hot water bottles or bean bags/wheat packs (best wrapped in a towel so not too hot) can ease pain. So can warm baths and showers.

Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.

Take care,

Elaine Ellis.

P.S. Just a few useful contacts:

1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.

2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

3. Endometriosis diet - endo-resolved.com/diet.html

HOPE some of this helps you. Best wishes and good luck!

(Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!

shukudai profile image
shukudai in reply to Scooteeder

Hi Elaine

Thank you for lots of advice! It is so good that somewhere in the world even though we have never met but thinking of me in such an extent. No you are not bossy at all just very caring:) Some I already I do or know but some good new advice.

I did go through about same medication in last 10 years. Mefenamic Acid, Tranexemic Acid, Spasmonal, Amitriptyline (it was prescribed as a painkiller which didn't take away my pain but I didn't have migraine which was nice)... I can't remember all.

Only the thing took my pain away was Zoladex but you can't have it more than 6 months and this made my migraine very severe. I can't have combined pill because I have migraine with aura. Progesterone only pill makes me just bleeding forever.

It is difficult illness, isn't it. Not good medication out there.

I am interested in Endo diet but I am struggling how to manage to feed me with it and others with normal diet. With me almost always not very well I can't afford to cook different kind of meal for my family. Garlic triggers my migraine so I get ginger tomorrow.

I should re start Yoga. I used to do Yoga 6-7 years ago when I was bit better than now. Well I got a free Yoga DVD with cereal box:) I got Yoga app on my phone and I only listen to Yoga music in the morning when I am waking up.

You know your advice is so thorough I can't reply enough. But honestly, I am so touched, I will thoroughly go through again and again.

Thanks

take care

xxx

PS. Thanks for the email address too.

I think you are very fortunate if the pain medicine works for you. It doesn't even touch my pain, and the heavy duty stuff isn't covered by my insurance. So I suffer, a lot. I do seem to get use to the pain (which is horribly sad), but I would love a pain pill that would help. I know what you mean by being worried about messing your body up with pain pills. I take (not recommended at all) 6- 200mg Ibuprofen every 4 hours, for 3 days out of the month around the clock. It's the only way I can function. And, that just brings the pain down to a manageable level.

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shukudai

Hi Aardvarklips

I am sorry that you are suffering so much. I feel for you. I take so many tablets and I still get a lot of severe pains. Can you not get something stronger than Ibuprofen?

Ibuprofen won't do me very much now anymore. I take 1g (which is 4 tablets) a day of Naproxen first few days when my pain started even the pain is very little and when the NSAIDs kicks in and reduce to 750mg (which is 3 tablets) a day as GP told me. I take 8 Buscopan a day as well. But when I reduce to 3 tablets a day the pain comes back and I end up taking more like Co-codamol. I try to keep 15mgx2 Co-codamol. When I took 30mgx2 Co-codamol I had really bad upset stomach. I have TENS machine and I use a few times a day as well.

A few days before the period starts, I get pain up my chest and that pain won't go away with Naproxen and I have to take Diclofenac for that and that only take the edge of pain away.

10 years ago, I just needed 1 tablet of paracetamol for my pain. 1 paracetamol quite knock me out and I slept very well. I just wonder sometime now my body is like this and if I continue like this, are there any painkillers left which I can take and work (even a little bit)?

I hope you can find something better way. Please take care,

xxx

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