to ask how you manage severe endo pain and work

[Frizzzhead]

I have severe endo. Several very large cysts and probably pretty wide spread endo. Pain got worse during the last year and is during my period and the days before pretty unbearable. Also severe pain when I ovulate. so almost half of the time I am in pain but it is excruciating during my period.

I have been referred to gynecology and think I will need surgery but I am looking at a very long wait due to covid. GP is not very useful with pain management. I have been told to take paracetamol/Ibuprofen and also tried mefenamic acid but it helps only so much. GP recons, only surgery will sort it really.

My issue is, the pain is now horrific. I managed work with WFH and taking the laptop to bed and curling up but I don't think I can do this much longer. So far I didn't take time off but it's getting to the point where I really don't function anymore. but I cannot take every months 5 days off sick esp when I look at a very long wait for surgery to fix this.

How do others manage? any recommendations on pain killers?

I'm so sorry to hear of the pain. I don't have end but I do have extensive adhesions (internal scar tissue) from pelvic and abdominal surgery including a tilted womb 'pinned down' from them the GP said...so i know a little of such pain. I know endo causes adhesions as well

I find sitting hard, I do have co-codamol for pain and try not to use it too much as can cause side effects. I'm not working presently but would try for a standing up type job if I did perhaps. and flexible. Also could look into PIP for support.

Some of the antidepressants such as Amitryptilline in low dose can help with pain and sleep as well.

Cocodamol was the only thing that helped me.

If you've not got a prescription for something stronger the best painkillers I've had over counter are the paracetamol and codeine ones you can get. Alternated with ibuprofen.

My sympathies, my endo pain was debilitating every month until I had my surgery a few years ago - it changed my life.

had not thought of cocodamol. will try that next.

I have read that taking the pill without a break can stop periods (or e.g. mini pill) and hep some in the wait for surgery

As a fellow sufferer I really empathise. Before my laproscopy I would wake in the middle of the night and drink whisky in the bath I was so desperate and my work really suffered. Since the lap and the mirena coil it is much better so as soon as you can get that done the better.
In the meantime I don't have much to suggest as most painkillers don't hit the sides. I did realise that being tense makes it worse so anything you can do to relax is good - cannabis, meditation etc. Also rather than resisting the pain sort of focus on it with your mind. Distraction is also worth trying.
However none of these things give proper relief. Stick on heat patches offer some comfort.

I wonder if masturbation helps. The longest period I went without symptoms was when I was having regular sex. Worth a try.

I really hope you get your lap soon.

The only thing that helped me was long lasting contraception and physically stopping the periods. Would the GP consider this in your case?

I cannot take the pill. I suffer from horrible migraine and the pill makes that so much worse - tried a few and not prepared to go near the pill again. I rather take the endo pain.

Cocodamol prescription 30/500mg and Naproxen (can't remember what strength this is, but it's Feminax Ultra in UK) give me good results.

BUT the trick is to take them are the first warning twinges, it's much easier to get ahead of the pain then try to bring it down once it's to the unbearable level.

My diagnosis is adenomyosis confirmed with ultrasounds (similar to endo but in the uterus muscle walls) as I've not yet had a diagnostic lap, but because of some of my symptoms endo is suspected, so not sure if this is relevant - getting on my thyroid medication has made a distinctive improvement in period pain for me.

I'm currently curled up on sofa feeling extremely dizzy, but honestly not in the sort of devastating pain that I am used to - today the pain has been managed by 1 Naproxen, a hot water bottle and many cups of tea.

I've not passed out or vomited from pain in over a year now To me that's a big deal. Started my thyroid meds in November 2019.

Over the counter try either Paramol or Syndol, and Voltarol gel rubbed into your abdomen too.

I had to stop working properly at 29 and I had already been on morphine or equivalent for 5 years by then (still on it now nearly 10 years later).

Try every hormonal option (combined pill works best for me but some get on better with progesterone only) and try to get a referral to a specialist for excision surgery (can recommend the John Radcliffe in Oxford and UCLH in London). Unfortunately I also have adenomyosis and ME so I’m basically screwed.

Keep on at your GP - there’s a lot more they can do to help, they just don’t like doing it. They think that if you’re not regularly telling them how bad it is, you’re managing. Don’t suffer in silence.

@Frizzzhead

I cannot take the pill. I suffer from horrible migraine and the pill makes that so much worse - tried a few and not prepared to go near the pill again. I rather take the endo pain.

Have you tried progesterone only? It’s usually oestrogen in the combined pill that causes migraines. Mirena coil is very low dose of progesterone only - I had an awful time with it but many swear by it

I think diet makes a big difference and basically cutting out anything vaguely enjoyable from your diet could help. I don't want to do this but more specifically I do notice that flare ups seem worse when I have eaten bread/pizza etc.
Turmeric is an anti-inflammatory and may help a little

@SinkGirl solidarity to a fellow adenomyosis person

Keep on at your GP - there’s a lot more they can do to help, they just don’t like doing it.

I've mentioned on here before, but a GP at my old surgery memorably once told me endometriosis is normal for women

Some doctors really should not be allowed to inflict themselves on patients.

Have you tried progesterone only? It’s usually oestrogen in the combined pill that causes migraines. Mirena coil is very low dose of progesterone only - I had an awful time with it but many swear by it

no, but I rather stay clear of it. I also have a blood clotting disorder and are mid 40s so not sure this is even possible.

sinkgirl, that sounds really touch.

Hi OP, sorry you're in so much pain.

I used to cycle cocodamol and tramadol, both prescription, with regular paracetamol. I found paracetamol helped a lot if I took it regularly. Hot water bottles and heat pads. Then my osteopath recommended rather than putting heat on the area of pain, put my feet in hot water, the theory being it draws blood away from the inflamed area rather than bringing more to it. I found this did help. I was diagnosed with mild upper end stage 1 endo but with excruciating constant pain. I had as much removed as was possible during a diagnostic laparoscopy but still had discomfort (was later also diagnosed with IBD which accounted for some of the pain). But. And I was so incredibly resistant to this - it was first suggested when they (finally) first suspected I had endo and I hated the idea - I eventually had a Mirena put in. And for me, it has been the best help. No periods at all, and reduced my pain tenfold. It doesn't work for everyone nor does the idea of it and that's absolutely fair enough but I thought I'd share that it's what has helped me go from living in constant pain and misery to barely thinking about it. I thought my life was over at 23. Not the case after all, but I know I've been very very fortunate. We're all different though and it can take time to find things that work. Agree with PP who said to keep at your GP, they can do more even if they still know shockingly little about such a debilitating condition.

I hope you get some relief soon and you're not waiting too too long for surgery.

I’m so sorry. I’ve had surgery 3x for endometriosis, it helps but reoccurs. When the pain’s bad I take prescription painkillers (Gynae prescribes tramadol, codeine and slow-release morphine).

I’m sorry it sounds awful. I have endo too, I’ve found sitting / lying on a plug in heat pack and drinking warm/hot water really helps as does gentle yoga, but it probably depends on the location of your endo IYSWI. Plus alternate Ibrupofen and co-codamol when it’s really bad. Also walking yoga and swimming lots when I don’t have pain has really helped I’m not sure why.

I think excercise releases endorphins which are pain relieving. Noticing having the pool closed.

OP I really feel for you and send healing hugs and strength . I would join the endometriosis face book group- it's full of endo warriors and they are really helpful with specific help and medication combinations. Where are you based op? I'm in N London and there is an NHS endo specialist who has changed my life this year. I'm 46 was finally diagnosed 4 yrs ago after I ended up going to an emergency walk in centre with the worst back and side pain. I was sent away and told to take paracetamol! However GP sent me for scans and they spotted 2 x 9cm cysts on each ovary. My periods were so heavy and irregular and I was having migraines nearly every week. I was initially under the cancer specialist as various blood tests were raised then was transferred to the endometriosis clinic. In September I had a call out of the blue to say my surgeon was back operating and they had a place for me the following week . He removed both cysts and extensive endo and also fitted a merina coil, later he told me it was stage 4 which was unexpected and it took 3.5 hours rather than the usual 1 hour for a lap. He also said it was adhered to my bowel and bladder which he didn't remove it all as needed a bowel specialist. Please go back to your gp and ask to be referred to an endometriosis specialist and also think about having the merina fitted. I suffer terrible migraines but it's a low dose only to the womb area and has revolutionized my life-very little bleeding and no pain. Call the gp tomorrow and say you are in too much pain to carry on and it is limiting your every day life.

Have you spoken to your work? They might be surprisingly flexible if you approach them to explain the issue, and suggest a work around.

You could explain that it’s the same 5 days every month and that you might not be as productive on those days but you will make it up in advance and afterwards.

It’s obviously company/manager dependent, but I would rather know you’re going to be unwell and less productive than just be wondering what’s going on with my usually productive employee.

Not going to comment on pain management as the others have good advice, but sending sympathies as endo pain is horrendous

Have you spoken to your work? They might be surprisingly flexible

no, they won't be. It's not the kind of work place. At least I can WFH and noone sees me. I am also a lone parents and really need the job so trying not to rock the boat.

Sorry Nancy you have been through quite a bit. I am in the North West. Will speak to GP again but they just aren't very useful.

I feel your pain as I too have severe endo. I'm on the pill but I'm still in agony if I take the 7 day break. I have paracetamol, mefanamic acid and codeine. You have to take them like clock work and with the mefanamic acid before you start feeling pain as it does take time to build up in the system. Also a hot water bottle on my back helps (even though pain is in the front) and I've found laying in my side causes more pain. I've heard the coil is good and I'm going to give that a go next.

@Frizzzhead, my workplace (many years ago) were unhelpful - and I was called in to have a discussion to someone senior to me, as I was needing to have a day off a month.
By that point, I had been diagnosed and given a leaflet explaining endometriosis, and took it with me. I showed it to the person I was meeting with.
I was never asked again about taking time off (although I did try not to anyway).

mine, they ever pile more work onto me. Management and HR is white middle aged men. different world...