Pain relief failing - Help!: Hi, I’m new... - Endometriosis UK

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Pain relief failing - Help!

AnnFox99 profile image
15 Replies

Hi, I’m new here but it’s been really interesting to read everyone’s posts and know I’m not going through it alone.

I had a laparoscopy last June where they excised endometriosis from my pouch of Douglas. I was in agony before, so much so I had to take weeks off work (I’m a primary school teacher). Before my surgery they had me on Naproxen and Codeine which seemed to be working alongside heat, a mirena and my tens machine. However two months after my surgery the pain came back even worse. They tried me on tramadol and it did nothing. They asked me to continue with ibuprofen, Anadin Extra and cocodamol when I really needed it. This all did nothing. Finally last week I was prescribed Naproxen again and Codeine Phosphate (15mg) I took 2 codeine and a Naproxen, along with an omeprazole, and it did nothing. I couldn’t sleep I was in so much pain. I applied heat and my tens but nothing helped. I’ve been forcing myself into work in agony; bless my class, they’re only eight but they can recognise when I’m in pain and have begun to offer to heat my wheat pack and get a teacher to get my tablets and tens for me.

Has anyone had this problem and found something that does work? I can’t keep struggling through the day and taking medication that’s doing nothing for me.

I have another appointment with the gynae on the 21st of Feb as I had no follow up after my surgery so my GP has pushed for me to be seen quickly but any advice before that will be greatly appreciated!

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AnnFox99
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15 Replies
27gems profile image
27gems

Hi AnnFox99I've had about 9 surgeries now, removes endometriosis from ovaries and within a shirt time pain is back. I've now also got adenomyosis and bowel adhesions and in constant pain. I cant take naproxen any more as caused 3 gastric bleeds - and diverticulosis- and to be honest - taking long term Anti inflammatory (NSAIDs)drugs is Dangerous.

What nobody tells you is opiates are overall safer!!! NSAIDs cause gastric ulcers and bleeds, damage your bowels and immunity and they also Get rid of your Natural Pain Killers - prostaglandins - so over time they make you worse.

I take 60 - 90mg codeine 4 times a day now. With anti depressant as it calms bowels and mood. I am reading up on natural help - so avoiding anything refined and oils that are not olive oil, I found a Australian Dr - Dr Cabot - has really good books on sorting out your hormones and I really recommend them - actually explains what makes pain worse and what we can do to calm it.

After many surgeries it's clear that they don't actually work - and cause Adhesions which complicates everything. Even with total hysterectomy many many women have repeated endometrial growths - what we all need is a Specialist Endometriosis Dr - which do exist but hard to find.

I've tried CBD - I think the shop bought oils are just not strong enough - but you can go private and get the real medical version of it now- as an endometriosis sufferer.

I too have struggled through my work days - taken so much sick leave at risk of loosing my job now. I wish womans health was given more support and research - costs the world billions with so many unable to function....

But try Dr Calbot and see if it helps - I've noticed improvements in some symptoms - so anything good helps!

MyStar86 profile image
MyStar86

how close time wise are you taking the omeprazol with your painkillers? Just omeprazol blocks the absorption of medication so you need to take it at least 2 hours prior to other medications. It’s best to take omeprazol first thing in the morning before breakfast then two hours later after food etc take your other meds because otherwise they will stop you absorbing the right dose of pain medication xx

AnnFox99 profile image
AnnFox99 in reply to MyStar86

Thank you, my doctor never said that. I’ll try that.

MyStar86 profile image
MyStar86 in reply to AnnFox99

hopefully that will help as you do have a strong mix of meds that should take some of the edge off but the omeprazol can’t block them that’s why you have to be careful with contraception pills etc and any other meds whilst taking omeprazol……doctors are rubbish sometimes I know lots of people who have not been told about omeprazol and the time delay needed.

Also be mindful taking tramadol at nighttime as it can prevent sleeping in some people.

I see a pain management specialist privately as the nhs was rubbish and I’ve had loads of endo surgeries and total hysterectomy and still in agony I’m only 36 and annoyed I’ve had some much done and still suffering. However I’ve just started working with the pain management specialist but I’m very hopeful as he is amazing and really listened so fingers crossed xx

MyStar86 profile image
MyStar86

how are you doing?x

AnnFox99 profile image
AnnFox99 in reply to MyStar86

Hi, I tried what you said and it worked briefly but then the naproxen and codeine wore off after about an hour. I tried to stagger taking them to see if that would help too but it didn’t make much of a difference.

I spent 2 days in bed then had a mass of shooting pains so bad I had to move around the house. My appointment can’t come soon enough!

Thank you for the advice though. I’ll keep trying and hopefully it’ll work eventually!

MyStar86 profile image
MyStar86

I am back on that journey myself as I had several endometriosis surgeries and a total hysterectomy but still in agony it’s horrific my bowels are horrific and I don’t remember the last time I slept. I can’t stand being in constant pain so I’m seeking a second opinion privately for my endometriosis as I am sure it’s on the diaphragm because my initial diagnostic lap was done by a non endo specialist so he didn’t really have a clue he was the one who also did my hysterectomy so I’m very skeptical given the amount of pain I am in and how my symptoms are getting worse. The idiot tried to put me on oestrogen only hrt as well plus I’m 36 so he put me on the highest dose!!!! Now I do take progesterone as well but the damage has been done.

When is your appointment? Good luck let me know how it goes xx

AnnFox99 profile image
AnnFox99 in reply to MyStar86

Appointment is on the 21st Feb. I’m going to push for another lap. I’m in the same boat as my last surgery was done by a non-specialist who told me it was nothing to worry about and that he only found one piece but I wasn’t under for long and his notes say he only checked my ovaries and pouch of Douglas not my bladder or bowels at all. I’m prone to constipation and uti’s so why he would check it I don’t know.

I will definitely keep you updated on what happens after! I hope you get sorted too. Just seems madness that they don’t recognise it and sort it quickly enough when it’s such a common condition x

MyStar86 profile image
MyStar86 in reply to AnnFox99

good luck for Monday I hope it goes well for you!! I’m seeing my new gynaecologist endometriosis specialist on the 7th March so scared but will be glad to have a proper endo gyne to talk to given what I’ve been through and still in agony it’s just crazy.

Take care and good luck xx

AnnFox99 profile image
AnnFox99 in reply to MyStar86

My appointment was cancelled last minute so it looks like I’m waiting another few months in pain to be seen again! I hope your appointment goes well! x

MyStar86 profile image
MyStar86 in reply to AnnFox99

oh my goodness I’m guessing this is the nhs? I had to take all of my care private I see my gastro this Friday and the endo specialist on the 7th I’m so scared but have to keep hopeful as I’m in agony my bowels have gotten so bad I don’t even know how I’m going to get to my appointment 😞. I’ll let you know how it goes and I’m sorry to hear about your appointment hopefully they will re book soon or try chasing the secretary? That’s what I used to do via nhs otherwise you seem to get pushed to the end of the list again. Big hugs cx

AnnFox99 profile image
AnnFox99 in reply to MyStar86

Yes, all nhs. My teachers salary doesn’t allow me to even think of private unfortunately :( I hear you, my bladder has been awful, I’ve had 3 infections since Christmas. I’m going to phone back if I don’t hear anything today.

Big hugs to you too! :)

MyStar86 profile image
MyStar86 in reply to AnnFox99

I can only do private due to my health insurance there is no way I could otherwise but the nhs broke me it’s awful the waiting then the cancellations.

You poor thing I hope the secretary can give you some answers as you shouldn’t be left just waiting so good for you chasing it!! It’s horrible isn’t it no one understands or knows how much we suffer 😞 I can’t even remember what normal feels like. Are you still working?

Take care and keep in touch I’ll be thinking of you hoping it gets sorted soon 🙏🏻 Xx

MyStar86 profile image
MyStar86 in reply to AnnFox99

how are you doing? Hope you are ok have you managed to get your gyne appointment since it was cancelled in February? I hope you have seen someone and not left to suffer. Thinking of you xx

AnnFox99 profile image
AnnFox99 in reply to MyStar86

Hi, I’m still waiting and still in just as much pain! I had an appointment on the 11th April but it was cancelled because of strikes, still awaiting another. I recently invested in a MyOovi so I could use it at the same time as my other tens machine, it’s great walking around work with on on my front and one on my back. Hopefully not much longer to wait now! x

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