Endometriosis - what painkillers are available?

[PleaseStopThis]

In agony. Crouched on loo as most comfortable position. Exhausted, life being ruined by this, feel suicidal as a result right now. Can't bear another month of this.
Have tried mefanemic acid - did nothing.

Pill - didn't help much but makes me severely depressed (have Asd and resulting MH issues already, need to keep balance).
Mirena coil - as above, also so painful to have removed I will never have another coil.
Tramadol - didn't touch the pain.
Currently use diclofenac. Works when pain not extreme, but not sufficient to stop me writhing in bed screaming when it is. However, it can be difficult to take as need to eat with it and am often sick and/or unable to move enough to facilitate this.

Have had two laparoscopies about two years apart, last was almost two years ago. Endometriosis not spread much which is good but laps don't seem to help pain (do help related symptoms eg when endo cleared from bowel).
Surgeon/gynae is specialist, trust him, it's just pain relief is meant to be from GP and they're a nightmare. (Consultant had to intervene for me to get ANYTHING).

Not sure what options there are or wtf to do but can't go on like this.

Also, period isn't heavy blood just excruciating.

I used to have to take ibuprofen in the middle of the night, there's a tablet they can give you to take before it so you don't have to eat first, maybe the same can apply with the diclophenac?

I had a hysterectomy and that fixed everything, pretty much. Is that an option?

Naproxen is good feminax ultra is that I think

I've had adhesions since my last cesarean section many years ago. It left me in such physical agony, I knew something was terribly wrong. Anyway, to cut a loooong story short, after many laparoscopies, the mirina twice, prostap injections and meds, I ended up having a full hysterectomy.

It's not solved the problem completely, but it has really helped. I know what you mean about being doubled up in pain, it makes life so miserable.

I was given Gabapentin after hysterectomy for nerve pain, the strong cocodamol and Naproxen which is a stronger version of ibuprofen, it's for inflammation pain.

Please, please, see your gp and tell them you are so low and thinking bad thoughts in desperation. I'd ask for Naproxen and a referral to the pain clinic at the biggest hospital near you.

Have you tried a heat pad? Argos do one with a temperature control, I'd recommend it.

Good luck. There are other things you can try. I'm on 4 meds for anxiety/depression, don't be fobbed off. You can have further laparoscopies too if you're desperate. 💐

Diclofenac was easily the most effective for me (when I could get hold of it). I think it's a stronger NSAID than Naproxen, so you probably can't take both.

Could you try alternating doses of NSAID and also an opiate on the worst days?

And are you seeking treatment for the endo? I had Danazol, butt I think there are newer treatments with less hostile side effects these days.

On a regular basis I take codeine (30mg) with paracetamol - I can’t take anti-inflammatories. I get this on prescription because the most codeine you can get OTC is 15mg. You can take diclofenac with codeine based pain relief. When I had chronic abdo pain and was waiting for a diagnostic laparoscopy I was given pregablin (similar to gabapentin), it was the only thing that made the pain bereable.

I don't think there are any non hormonal treatments.
I don't have children yet (am 33) so hysterectomy not an option.

I've tried diclofenac and tramadol together and it didn't make much difference.
How on earth am I supposed to carry on with normal life? Even the general feeling of illness is disabling.

I have tried
Naproxen
Mefanamic acid
Codeine
Oramorph
Fentanyl
Butrans patch
Tramadol
Prostap injections for longer if not TTC but had to stop them as was TTC

I found tramadol with naproxen for breakthrough pain the best

I would go back to the gynae now and to discuss another lap operation with this person. "Mild" disease causes such pain sadly.

Did the last lap you had go well in that did the surgeon manage to excise all the endometriosis?. Where was it sited?.

www.endometriosis.org.uk is a good, informative website.

This site is the right one to use (not the other)

www.endometriosis-uk.org/

Thank you.
Going to try to get referred back to gynae as from the symptoms I think it may have spread again.
Ended up in A&E after hours of agony, obviously by the time I could move enough to get there the pain had lessened so I was triaged to see GP. There seems to be no way to get adequate pain relief when it's bad and you can't move...

Anyway GP was lovely and explained that diclofenac works best when taken in advance of period (starting 3 days before) rather than in response to pain. Apparently it reduces the level of hormone that causes the uterus to cramp.

He was surprised and apologetic I'd not been told that before. He was also surprised when I got out the box of diclofenac and he said it was the strongest suitable thing.

Hopefully this will help!

I wear a Butrans patch for endometriosis pain. I think it helps to take the edge off. Other than that I’ve used diclofenac suppositories, I find they work far far better than the tablets.
Tramadol doesn’t do much for me other than make me sick.
I have several bottles of Oramorph in the house that get used occasionally but I hate the way it makes me feel.
Have you tried a Tens machine? It didn’t do much for me but I know some people have said it helps.

I have oramorph. It’s literally the only thing that touches the pain.

Can you give

Buscopan & an anti emetic like prochloperazine or cylisine

Co codamol 30/500 x 2 and 600 mg ibuprofen a go?

Take the anti emetic first then the anti spasmodic

Then the ibuprofen an s then if you need back up do the co codamol

I know how awful it is

These are what worked the best for me

But all of them were needed

I'm glad your GP was helpful, I was going to agree with the others about the pain clinic to discuss medication timing and similar as that can be really helpful to essential for good relief. It's a shame you weren't told about taking 3 days prior when you first got it but hopefully it will help now.

Just asked my friend and she says Butrans patches and Oramorph were the only things that helped her. She had a hysterectomy but for some reason they decided to leave her ovaries in - so the problems with the endometriosis in her bowel just continued. In the end she had injections to induce menopause plus bowel surgery and is now doing much better.

I was prescribed Dihydracodeine & Diclofenac, I was also put on Norethisterone to stop my periods. You need to get an urgent Gynocology referral & talk through your options with them.

Did your GP prescribe something to protect your stomach? Something like omeprazole should stop the sickness from the anti-inflamatories if it's because they're irritating your stomach. Otherwise an anti-emetic might help. I find cyclizine good.

If the diclofenic doesn't work on its own you probably need combination pain relief. So an opiate, an anti-inflammatory, something for cramps and something for nerve pain. I'm on slow release Oxycodone, slow-release ibuprofen, paracetamol and pregabalin plus oxynorm for breakthrough pain. I started this regime for endo but actually I have other problems as well now so it's treating different types of pain. I tried both morphine or buprenorphine before the Oxycodone but had a lot of nausea and fatigue from them.

The thing that helped me most was really thorough excision followed by long-term gnrh treatment. You could try it for 6 months to give yourself a break, but it can be tough at the beginning and some women find it takes a while for their cycle to get back to normal afterwards... so might not be right if you want to ttc soon.

I hope you can find a good solution

My gynae has just offered to start me on pregabalin. Can I ask those who've had this or gabapentin what you're experiences were? I'm a bit nervous about the prospect of taking something psychotropic.

TheTurnOfTheScrew I had pregablin for chronic abdo pain that turned out to be endometriosis. What dose are you having? I found initially it made me a bit nauseous but that settled quite quickly. Once I got up to 150mg I felt quite foggy headed (but I accepted that due to the fact it eased the pain I was in). It was really tough to wean off, I’ll be honest. For a couple of days after dropping a dose I was really emotional and wept at random intervals! But it played its part and it helped with the pain when I needed it.

@TheTurnOfTheScrew I started on a low dose (100mg a day? I can't remember it was so long ago!) and worked my way up to about 300 or 400 I think. I had fairly instant pain relief from it - within a few days. I think the minimum therapeutic dose is supposed to be 150mg so you may not get any relief from a lower dose than that - doesn't mean you can't work your way up to that though. I didn't really notice any extra side effects when I started it or when I increased it but I was already on opiates. I didn't have any trouble reducing the dose back to 150mg gradually (I did this because I developed a side effect that turned out to be another medication). I do suffer from fatigue and am a bit foggy headed but I couldn't say for sure this is down to the pregabalin - just as likely to be the opiates or the gnrh meds.

Thank you both - it's really helpful to hear your experiences. I only saw my consultant on Tues, so am waiting for the letter. I'm concerned about brain fog in relation to work, and so if I do start it, I'm going to wait until I have a week off with no plans in January.

My consultant was really responsive though, and prepared to look at a variety of options. She offered surgery, but I opted to try increased pain relief first with a review in 3 months.

I take naproxen and paracetamol as soon as my period starts, before the cramps get going. It isn't as effective now as it was when I started taking it in the spring, but at least I can sleep now. It is debilitating. I wish I could wave some magic wand and not have to deal with it every month. I have the heavy bleeding as well, and even with naproxen I have to stay indoors for at least one day of my cycle.