To call the out of hours with suspected endometriosis pain?

[Jellyjumpers]

I am unsure if I need medical input or can wait. I had endometriosis removed from my bowel at the end of last year and a coil fitted. For the last few months I have had sciatica and pain in the left hand side of my stomach. Gp thinks this is ibs but I am not convinced

I am bleeding today and have worked from home because I wanted to be able to access a hot water bottle. I have taken the antispasmodics the gp suggested but an still in a lot of pain. I do not know if I should call the ooh as felt ferry verry faint when I went to the toilet or if I should manage at home and look for a routine gp appointment.

Does your gp surgery do the ‘patient access’ online booking system? Ours does, and they reserve some appointments for online booking only - well worth asking & registering.
If you get bad again where you’re passing out, I’d definitely get to a walk in centre

FaithInfinity glad I am not making up the night thing. I am feeling like nobody in rl believes this pain as they can't see it And so I am feeling like I am making it up.

The problem I have is I don't know if I will be able to get a gp appointment in the morning as tried on opening and could not get anything for today.

You can buy paramol over the counter. I've found dihydrocodeine more effective than codeine phosphate.

Id ask your gp for a call back frim the duty gp tomorrow.

Greyponcho
Yes I am registered for patient access and checked this morning and were no slots for a couple of weeks. What time do online only appointments become available in your practice.

I feel really bad using emergency supplements appointments or the ooh just to get pain killers.

CalvinJohn I did not realize it is possible to get dehydrocodeine otc. I find it both gives more pain relief and less side effects then codeine
My plan for tomorrow is to try a pharmacy that opens early and call the gp on opening. Our appointments are telephone first so not sure the duty gp was available. Z

I think emergency GP appointments are for this type of issue (although your GP should have given you painkillers last time you went). Try your GP first and pharmacy if you can’t get an appointment - or see if the GP might do a telephone consultation for a prescription given it’s not that long since you’ve been seen? Dihydrocodiene OTC is similar to cocodamol in that you can only buy it with paracetamol and not as strong as can be prescribed but it might help.

FaithInfinity
Yes they do often give prescriptions or blood tests and things from telephone appointments and I have only really gone in when they want to do an examination.

My concern is the gp I spoke to dig not want me to be taking painkillers due to side effects and so I worry I won't be taken seriously. Obviously I need help when being sick or fainting from pain and I would prefer a different approach to taking codeine to try and get some sleep.

Even after cocodamol I am not comfortable enough to sleep. Surely it isn't normal to be in this much pain with no diagnosis.t

I was exactly the same. I had this on and off for years, until it became so severe I couldn’t work. I had to push hard for a diagnosis. I think at the moment your need for analgesia outweighs the risks of the side effects of pain relief. You need to be able to sleep! I think this is beyond IBS - you need further investigations and treatment. Bear in mind I was in agony, taking paracetamol with 60mg codeine 4 times a day and taking pregablin (a nerve painkiller) and it took the pain from a 8/10 to 5/10, within 2 days of my op although I was post-op tender, my family could already tell I was better. The pain settled that quickly.

While obviously sore from the op the first thing I remember thinking in recovery was that I no longer had pain or pulling on the left hand side. At this point it seemed like the surgery nurses were handing over to recovery and said I had an ovarian cyst removal and endometriosis and adhetions treated. People in work who I barely know commented how much better I seemed.

OP, has anyone ever mentioned the possibility of adenomyosis to you? Your symptoms sound SO familiar. I found medical professionals very dismissive, until I was referred to a brilliant consultant (he knew what he was looking for, and I’m having a hysterectomy soon).

If you’re in a lot of pain, you can absolutely use an emergency GP appointment or ooh for this. I had an emergency appt a couple of weeks ago and was given Oramorph (plus professional advice on other ways to manage pain) - it really is worth doing.

No i have never heard of adenomyosis . What is it and how is it diagnosed?

Sending solidarity, OP - I have adenomyosis and what you're describing sounds very familiar.

How long has it been like this in terms of your history? My periods started becoming alarmingly painful about 6 years ago, but the 'bad' ones used to be only now and again. Now I get crazy pain with two out of every three periods.

Was your endo treatment excision or ablation?

Adenomyosis is like endo but where it grows into the wall of the uterus, instead of roaming through the rest of the body. Mine was diagnosed by two internal ultrasounds.

A google search will tell you more - more accurately - about adenomyosis than I could, but in short: it’s similar to endo, but in the muscle lining around the uterus. Mine was diagnosed during laparoscopy (scans suggested it but were completely ignored by HCPs, even when I asked about the results). A huge number of doctors haven’t even heard of it, so it can be overlooked unless you’re dealing with a specialist.

With endo and adeno I think we very much need to advocate for ourselves, unfortunately. You know if something isn’t right - keep pushing until you get some help.

Thanks the explanation is helpful. I have had a ridiculous number of ultrasound and this was not found. The gynae said they were an endo specialist, so hopefully they would have picked this up in my lap.

I thought I had had exsitiom, but the gp said it was burnt away. However, their was a pathology report confirming endo, so a sample must have been testable.

Op you poor thing. I was diagnosed with Endo in May and fitted with mirena. First couple of months after the laparoscopy I felt so much better but the niggles returned and this month it's as bad as pre surgery. I'm in bed here in agony right now. No reason why I'm posting other than to know we're all not alone!

IIRememberSoIDo
You could be he! It sounds like we have the same story. Sorry to here you are struggling

It feels almost cruel to have had the surgery as it shows how good life can be without pain. Are you having treatment?

Another night of fun and games starts again!

Getting ready for bed I needed the toilet and am now in so much pain I am shaking. ☹️

How are you OP?

I am feeling much more positive. I had a helpful call with a male dr this afternoon. he has referred me to gynae as thinks it may be endo. He is also prescribed amitriptiline and is happy for me to take codeine or declofenac if needed. It feels great to be listened to.

That's really good. Amitriptyline is great. It may take a while for it to really take affect with your pain, but at least you're gunna sleep amazing!

Hope you're feeling better today, OP. I can't get past the fact that a GP told you to try herbal tea
Correct me if I'm wrong, but was it a male GP?
Anyway, hope you're feeling better and glad that you felt listened to.

Both male GPs. Another female gp told me it was normal to have diarrhea ten times a day vomit and faint on periods. I feel sorry for her if she puts up with that every month.

Looking forward to Amitriptyline sleep. Can anybody remember how long it takes not to feel sedated all day? Hoping that with lazy mornings over half term i should be ok to work after a week.