I have had more reliable information from... - Endometriosis UK

Endometriosis UK

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I have had more reliable information from this site than I have had from any doctor I have ever seen. Why is that?

jinka profile image
14 Replies

I've had three Laps, injections and the pill. My symptoms were bad but I was getting by, but that was before I had IVF four years ago. It didn't work and two weeks after my period came the pain, much worse than before and the only thing that helped was a hot bath or a hot water bottle.

It was only early last year that I managed to get referred again, despite going to the GP and asking to be I was told it couldn't be the Endo as I had a Lap just before the IVF! I was never offered any pain relief, I asked but didn't push it as I felt proud of myself for managing the pain on over the counter meds.

I was given the injections last year, then went onto the pill and all settled down until September when I had a urine infection. This lasted for months regardless of the antibiotics I was given, and although the pain when urinating has gone I'm still getting the feeling of needing to wee even though I've only just been. Until I came on here I never knew that this could also be a symptom.

OK so after this very long winded rant, I will get to the point of my question. I went to the GP last week and was finally given Mefenamic Acid, which has worked, been pain free since last Saturday. Problem is since I've been taking it I have had an unbelievable upset stomach, called GP for advice and was told to either stop taking it or basically put up with it, and to go see him after bank holiday. Things have gotten worse since I spoke to him and I'm going to stop taking them, but it has taken me so long to get any pain relief that I honestly don't know what to do now. I stopped the pill in December on GP's advice as the pain started again, even with the pill,what other options are there for pain relief? I'm having another lap soon but need something to keep me going until then.

Sorry for the really long question! But any advice would be very much appreciated xx

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14 Replies
Sunflower846 profile image
Sunflower846

Doctors really piss me off. If i was u i would get an app with a diff doctor because u can get medication to help with ur meds to stop ur stomach getting upset. I was given omeprazole that u take on an empty stomach in the morning, there is other tabs u can get also. Do not put up with what doctors say as they can always help. Hope u can get something because the fact uve found a pain relief that helps u is amazing. xx

jinka profile image
jinka in reply to Sunflower846

Thanks good to know I'm not the only one who has problems with the doctors! The trouble at my surgery is that there are about 12 different doctors and you can't request the one you want, so every time I see one I have to start at the beginning even though they have my notes on the screen in front of them!

I'm on Lansoprazole but only 15mg the Mefenamic Acid is 250mg per tablet and I have to take six a day so really the 15 mg haven't got a chance!

I've never been a pushy person, I'm busy and I hate going to the doctors but I'm starting to believe that the only way I am going to get help from them is to be as obnoxious as I can be!

Sunflower846 profile image
Sunflower846

I to wish I was pushy as my endo wouldn't have got to the severe stage if they done something yrs ago. I am now trying to be in control and demand anything if I want it. Luckily for me I can see the same doc most of the time but the repeating urself is a pain in the ass. Go bak n make them change ur meds. Ur the one suffering not them. Hope u get it sorted. Xxx

jinka profile image
jinka in reply to Sunflower846

Yep the same as me! I've never been pushy, I've always been happy, cheerful and bubbly! I've always completely trusted the doctors that I have seen, even tho I have had this for years and have only gotten help because of my fertility problems not the Endo itself!

I'm not happy and I'm definitely not cheerful anymore, at least when I'm at home (my poor husband) but during the day at work I manage a staff team of 18 so I have to pretend to be these things! when they come and tell me about their problems and moan and complain I sometimes just want to scream! Lol but I bet all of us on here know all about that! Xx

Amb43 profile image
Amb43

Mefanamic acid is known to upset the tummy, quite seriously at times, you must ALWAYS take with food.

I agree about the info on here being much more reliable than many docs and even Gynaes. They should learn to "Google" or be allowed to join this group!!

Hope you feel better soon. xxx

worth71 profile image
worth71

Mefanamic should never be taken on an empty stomach, you probably already know that but my doctor gives me omeprazol to take each day that I'm taking any type of these NSAIDs as they can all cause stomach problems. Omeprazol will stop the upset tummy and also protect your stomach from any ulcer type things developing and I can't believe you weren't prescribed these at the same time because everybody I know who takes anti-inflammatories (NSAIDs) such as mefanamic, voltorol (diclofenac) naproxen are given omeprazol to take with it, even long term use of ibuprofen will cause stomach damage. My mefanamics are 500g but I only take three per day, didn't know they did 250g but sometimes would be handy to spread them out more through the day. I also take paracetamol or sometimes one paracetamol with a co-codamol 30/500 or sometimes if really bad go for the two co-codamol which I try not to as they space me out, and I get constipated so have to take laxatives each day too lol. I also find mefanamic works better after I've been taking it a few days, which I have been this last week or so as had my lap last week and my pain has been much worse as they wouldn't remove the endo.

Ask your doc for the omeprazol, as soon as I took the omeprazol all my tummy upset went away, I am strict that I eat before I take the mefanamic too.

Hope you feel better xxx

Impatient profile image
Impatient

If you're prone to constipation, they can be a good laxative, looking on the bright side for some of us. I'd be happy as a lark be able to spend the day on the loo right now emptying out. Arghhh.

In all seriousness, it isn't a pleasant side effect to have but if that is the only troublesome one and the drug is otherwise doing its job pain killer wise then it is probably worth trying to find ways to still use the drug but slow down the loo trips.

Definitely need to eat at the same time as having these drugs, and not just a nibble, but a decent quantity of food, not just soup or fruit. And eat a lot more than normal, because it is racing through you, your body won't have the food in long enough to get much nutrition out of it.

I would try over the counter meds for diarrhoea in the 1st instance, like diacalm or something similar. better that than stopping the drug that does actually relieve your endo pain.

Remember to keep well hydrated while you have the runs, it's easy to forget how much extra fluid you are loosing, and end up dehydrated.

Boiled rice is excellent for runny tummies. lots of boiled rice.

You don't need to have it with curry,

ketchup or gravy or pasta sauces do just as well. Strange combinations but anything to add a bit of flavour will help.

Bananas are very good for runny tums too.So you could eat them as is, or slice them up and add them to the boiled rice.

Definitely avoid fatty foods and oily foods, they will make the problem worse not better.

While these are only temporary remedies they should tide you over till you see your GP after the easter weekend, and should spare you having to have the pains instead of the pills.

worth71 profile image
worth71 in reply to Impatient

Impatient...is it mefanamic that causes diarrhoea?

Impatient profile image
Impatient

The drug is a muscle relaxant anti-inflamatory painkiller, like the others mentioned in your post. So with your bowels 'relaxed' they tend not to hold back where loo trips are concerned. In addition the drug itself is causing the extra excretion of fluids to go with the relaxed state of affairs.

I've got the diclofenac/volatrol ones, and yes they do make you need the loo much more, but as far as pain relief goes, for me it's been very good. My GP was absolutely adamant never to take them without a decent amount of food at the same time. I have cheated once or twice when pains came on and I wasn't near food, and they still work, but it's the damage they can do to the stomach lining when taken raw that's the issue.

I try not to take them for too long at a time because they have side effects that interfere with day to day life, but I prefer to have those and be able to go to the loo, than the likes of cocodamol and then not be able to go.

That's just me, and my preference, we are all different, and must decide for ourselves what suits us.

and i wasn't given omeprazol with the diclofenac.

I had omeprazole years ago when they thought my gall stones was a stomach ulcer and gastric reflux, as it is supposed to keep the stomach acid levels down. But it too can cause tummy upsets.

I'm not sure it would be of much help with mefanamic.

worth71 profile image
worth71 in reply to Impatient

The omeprazol did make a big difference for me when taking mefanamic or voltorol, without it I couldn't take either, I don't find that they cause me diarrhoea either, but that could because I regularly take codeine which does cause constipation so I take a laxative everyday to keep things from getting bad. As you say we are all different and these tablets will affect us all slightly differently. The few times I've taken them without food they have made me feel quite sick and given me heartburn.

On a rare occasion that I actually seen my assigned GP just before Xmas rather than my lovely lady doctor who I mostly see, he gave me a full on lecture about never taking NSAIDs without omeprazol, talking to me like I was a child, I said I try very hard not to constantly take tablets and do know what combinations i can take and cannot take and will always try my tens machine or hot water bottles before going for the tablets, I remember one gynae doctor told me to take the pain killers three days before the pain :/ hmmm if I could look into the future I'm pretty sure I'd be rich and have paid to have treatment privately lol.

I wonder if because these drugs are muscle relaxant and make bowels relaxed is maybe why I think I'm constipated but really have just a lazy bowel when on these drugs, I hate having to rely on any drugs and don't want to become dependent on even light laxatives, I have been taking them the last two weeks since my lap as going has been a bit more painful, and I've been in a lot more 'endo' pain since the lap, the actual op procedures I'm over I think but maybe it's where they've disturbed it - was hoping I would have had some relief from the endo pain now but as they didn't touch it that's not the case xx

jinka profile image
jinka in reply to worth71

Hi Worth, does the Tens thing work? My husband was looking to get me one but I stopped him, thinking I would rather use my trusty hot water bottle which in my humble opinion is the best invention ever! :) of course the only problem with it is, I don't take it to work with me, can you take the Tens machine out and about?

worth71 profile image
worth71 in reply to jinka

Yes it does work most of the time, there are times when nothing seems to relieve the pain as you probably know. mine is just a cheap one from lloyds chemist, it's not the best out there but does help, my hot water bottle is my faithful friend but you don't always want the heat if its hot or you're just feeling a bit hot so that when I use the tens - and yes the actual unit is about the size of mobile phone and has a belt clip so once the pads are in place you just clip it on.

And yes defo eat a proper meal with the mefanamic, they seem to be the best that I've had out of all them but they are designed specifically for pelvic pain, when I've not eaten with them it's made me feel very poorly, even if you just have some toast or a bowl of cereal xx

jinka profile image
jinka in reply to Impatient

Thanks all, yeah I've got to be honest I've suffered with constipation for years so as odd as it sounds it wasn't a completely unwanted side effect! I was surprised though as I don't usually have a sensitive stomach and I've taken codine and ibuprofen for ages with no issues.

Impatient - I think that's the key! It does say on them to take with food, but I have only been taking them with a biscuit or fruit, nothing substantial! I will try this tomorrow so fingers crossed! I'm also going to reduce the dose rather than stop taking them completely, they have been working for me and its really hard to make a conscious decision to return to suffering pain.

Thanks xx

Abbs profile image
Abbs

Mefenamic acid is for period pains and its harsh on the stomach like ibropohene my advice for you is to take gaviscon to help your stomach upset. Also the painkiller they give you can't help endo pain my advice is to ask for something stronger cos endo pain is the worst pain in the world as for the need to pee a lot that comes with endo. My endo was not detected even after I had lap and dye test so don't mind the crap the doctor is saying that you might not have endo despite of you having lap prior to your ivf. Good luck and you are not alone.

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