Pain killers or not? Perplexed. - Endometriosis UK

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Pain killers or not? Perplexed.

14 Replies

Hi, I have a dumb question.

It's 3.5 weeks since my diagnostic laparoscopy, so I think the incision points are more or less healed. The consultant told me there was too much work to do in one day surgery session & needed an MRI and multi-discipline team to look at results.

I was feeling virtuous, not taking pain killers today for the first time since the lap... But then realised I'm just hiding in bed because of the constant ache and fatigue attached. It's kind of like really bad endo-period pain plus a bit extra for the sharp pain areas which might be the adhesions left there plus the endo spots inside that were also left there. It's confusing because I know the problem is still there, even though the incisions are getting better.

I'm reluctant to take pain killers because I think they're not great for health (e.g. mefenamic acid could hurt stomach lining, etc). But,I'll also need to be back at work in a couple of days.

What do other people do? The show must go on - I can't hide out forever.

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14 Replies
Moon_maiden profile image
Moon_maiden

HiThe incisions are a tiny part with healing, it’s what they’ve done inside and moved things around.

You’ve done really well not taking any painkillers. I tried and failed, but they don’t always work and I think overdone things.

If you don’t want Naproxen or opiates, look up Nefopam, it’s not in either of those classes.

I’ve been using arnica cream on abdomen along with magnesium spray which I thought was helping.

If you think you need more time and can do so see about extending fit note.

Do you know when your follow up is to get more info and scan?

in reply to Moon_maiden

Hi Moon_Maiden,Thanks for the ideas.

Before I found out I had endometriosis, I used to take quite a bit of ibuprofen (always within the safe limits on the instructions), but I'm feeling cautious because I have acid reflux now as well. It wouldn't surprise me if these were related - being a holistic human and all. ;)

When I talk to the GP, I'll ask about what they think would be safe to take long-term. I'll ask about Nefopam - I looked it up online, and it has quite a few side effects listed - including difficulty peeing. I wonder how common that is?

About extending the fit note... I think in the first instance, I might check with HR about starting at reduced hours if I can't go full power on the first days. I know I have another surgery coming up, so I'll have to ask for more time off again in the future. I'd like to avoid ruffling feathers as much as possible (within reason).

I think the MRI scan might be some time in the next two weeks (they told me it would be 4 to 6 weeks after the diagnostic laparoscopy), and I'm waiting for the appointment letter.

Moon_maiden profile image
Moon_maiden in reply to

NSAIDS (ibuprofen, Naproxen) at least Naproxen should be prescribed with something like omeprazole to protect the stomach. I was prescribed it for possible reflux about two years ago, did nothing so stopped taking it. It was all around the same time that I started getting worse, I’d put up with bad periods, blocked sinuses, etc for years. There’s probably some hormone link they’ll discover at some point 🤣

Hope you feel better soon and work are cooperative 🙂

Heloo85 profile image
Heloo85 in reply to Moon_maiden

Hey hun, hope you’re well!

Just wanted to drop a note on the blocked sinuses! I had blocked sinuses for years! Then about a year and a half ago they returned with a vengeance! Always right ear blocked! Couldn’t understand it!

I did some research, and it’s linked to bowel issues! Xx

Moon_maiden profile image
Moon_maiden in reply to Heloo85

HiThat’s interesting, I’ll have to look it up.

Considering I still have bowel issues, it’s something to take into account.

Not sure if mentioned this, brain dead with painkillers these days 😂🤦‍♀️. I said to gastro last year could using CPAP for sleep apnoea by increasing oxygen could this cause digestive issues and make dormant conditions become active. He immediately dismissed it, but a couple of weeks ago a webinar Q&A with sleep consultant turns out my theory is something he’d considered for ages and now doing research. Goes to show links that exist.

How are you doing? Any updates? Good news maybe?🤞

Heloo85 profile image
Heloo85 in reply to Moon_maiden

One reason sinus problems can be so difficult to fix is that there are many different causes. Today I’m going to write about another very common, but often overlooked, cause of sinus problems. For fun I will share with you a story of a patient who was suffering from sinus problems that turned out to be caused by trouble in her intestines.

I can’t post the link as got told off before for not posting from NHS! Lol!

For years I was plagued with a blocked ear! I had to put my head down to unblock it! Always right ear! It actually left after my last surgery, but didn’t see the connection! Omg it was annoying, and lasted years! And like I said it returned about a year and a half ago! I still made no connection to Endo! But I have spent the last year and a half bent over so I could hear! 🤣! I have chronic daily pelvic pain, so wasn’t sure if my Endo had come back after surgery! Until it really kicked off! So I was like hmm... That’ll be why I have just spent 1.5years bent over! 🤣

Nope, no news! I’m really poorly! My GP has told me to go away, because I message to much and they’re busy! I had a period that left me bent over! I’m having really bad night sweats! I absolutely stink rancid, I have dropped a lot of weight! Had Covid vaccine that knocked me sideways! Ugh! Other than night sweats, the only thing I ain’t started with yet is daily fevers! No news on surgery! No news from consultants! Nothing new 😡!

Xx

Moon_maiden profile image
Moon_maiden in reply to Heloo85

That is so not good about your situation. Have you complained about GP? They are supposed to be responsible for your health not telling you to go away. Hormone levels are definitely not right with sweating so much. 🤞 you at least hear from consultant.

I’ve tried complaints at the hospital and getting nowhere. They want to waste my time and ignore I’m quite happy to waste theirs. I’m putting together something for CQC. All I want is to be well and work which isn’t a lot to ask.

I’m surprised gynae consultant didn’t step in as he’ll get his lack of notes potentially investigated. Chances are if he’s done it for me, there’ll be others.

Heloo85 profile image
Heloo85 in reply to Moon_maiden

I just pointed out the obvious! I said if you didn’t keep ignoring the fact I’m telling you I can’t get better, I wouldn’t have to message so much, but alas, here you are complaining! I haven’t been cured from the disease that landed me in the hospital, you know 🤣. Then followed with, don’t worry though, I won’t be using your service again! 🤣.

Yes, my hormones have been on the whack for about 8 months! I said before I ended up in hospital, that I thought I was heading for menopause! I have had a Zoladex injection, that could be causing the night sweats to pick up, but I have just had a period, so I don’t think it’s kicked in yet!

Just complain! These consultants/Drs/GPs are useless! This pandemic has really highlighted how much they’re more interested in pay than they are their patients!

I feel you! I just want my life back too! We pay them to fix us, so they should just do what we pay them to do! I’m starting to think they’re no different than snake oil sellers! Xx

Moon_maiden profile image
Moon_maiden in reply to Heloo85

I’ve considered changing GP’s several times, but could be going from the frying pan into the fire. Although may have to if they kick me out. The NHS is in dire straits because people that run them don’t really care why so much is wasted. Have you changed surgeries or just not going to see that GP?

I had one period with Zoladex, but did nothing for the pain, gynae said it can take two or three, was a waste of time and money.

Paid so much into a crap system. Personally I think they are deliberately making it crap so more people go private, then they’ll start turning the system round to that. You’ve only got to see how many of us have had to trim to private. Although I’d paid for him to tell me he hadn’t checked the bowel as he wasn’t a bowel surgeon. 🤷‍♀️

Heloo85 profile image
Heloo85 in reply to Moon_maiden

We are just stuck between a rock and a hard place! I tried to go private for an MRI but wouldn’t give me one because I’d just had one, through NHS? Believe it or not 🤣! I’m just not going to go see a gp again! I honestly don’t see the point, at all!Yes, Zoladex has never done anything for me! I think it is to stop the endometrioma getting bigger! With the pain I felt last week, I am pretty sure my infection hasn’t gone! Which is what I keep saying! But they’ve told me, if infection hasn’t gone, I’ll end up with a colostomy, but no ones doing anything? 1) not making sure it’s gone! 2) not checking to see if it’s coming back! Lol! So I suppose it’s just a colostomy for me then?

Xx

Moon_maiden profile image
Moon_maiden in reply to Heloo85

What about seeing the consultant privately? Or a different one who may actually give a toss.It’s not something they should be taking so lightly.

If your GP surgery has an econsult form, use that, just tell them you have an infection still and request the antibiotics you’ve had before. Include the fact that if the infection hasn’t gone and no one does anything you could end up with colostomy bag.

Harriet_health profile image
Harriet_health

With my pain relief I was prescribed a stomach lining protecting pill, sorry I can’t remember the name, but I had to take one a day and it helped me not get any tummy upset from taking pain killers. Maybe that’s worth asking about with your GP

Claire_Alexandra profile image
Claire_Alexandra

Hi there. I’m two weeks post diagnostic lap and down to paracetamol once a day but had full doses of ibuprofen and pracetamol for at least 8/9 days and cutting back slowly since but it’s hard. I’m still using hot water bottle a lot and heat pad so don’t feel like you can’t use those more regularly if trying to avoid meds. I’d follow up and see when your follow up/ the teams next MDT meeting is so you have a timeline I find just having a date even just for a question or check back in again Hellas focus my pain management as short term. Xx

in reply to Claire_Alexandra

Thanks for the suggestion to try the hot water bottle - I could try that. Yes, it's good to have an appointment date to look forward too. I'm waiting for my letter with a date for an MRI, and it should come some time in the next few weeks.

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