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.

Yes menstral bleeding. I initially bled off and on like a light period but have not used anything more than a washable pantie liner since April or may. While not as heavy as a normal period I am using pads and their are some small clots.

I had one scan to check if an ovarian cyst was causing the pain which found a fibroid which the gp says is not concerning as they can grow to 25 cm. I had another when in hospital to check for burst cysts and things. m

Thanks I know a scan can't rule out endo but I don't know how to convince my gp and a gynae at the local hospital that this is the case. I am also concerned about adhetions as yet a pulling sensation when I open my bowels

What is the pain like and where is it located. IBS pain/stomach spasms are bloody painful (and this is from someone who has RA). Antinflamtories will indeed make IBS pain worse.
Take the anti-spasm tablets and also peppermint tea - both will help if it’s stomach spasms

As a sufferer if endo, I would think your symptoms are caused by the endo. The gastric symptoms are likely due to adhesions in your bowel.

I had sciatica for 9 months and was told I had a 'bad back'. I had a chocolate cyst growing and putting pressure on the nerve I don't know about you but I always get IBS symptoms when I have a flare up.

Not sure what anyone will do for you as an emergency treatment (ie now) but I think you need further investigation to get to the bottom of all of this. 

I have some general pain across my stomach which is manageable period type pain.
The second pain goes down my left leg and into my little toes.
The third and most severe pain is on the left hand side level with my hip, possibly overy or bowel it is in a small place no bigger than a pound coin but is really intense pulling sensation. It gets worse in waves and makes me hold my breath unless I consciously breath through it

Yes having endo on the bowel does seen to cause ibs symptoms. The other odd symptom is I get white blood cells in urine when in pain.

Has the cyst been removed and did this stop the sciatica?

I also do not know if it would help to get the gp to take this pain seriously as I have been told to treat at as ibs and come back if no better in three months

Endo can only be seen with a laparoscopy so I wouldn't be satisfied with the scan being clear.

I have endo and it sucks. I'm currently being investigated again as I'm having pain after not suffering for years since the laser ablation and subsequent pregnancies. Scan was clear of course but I'm going to push for a laparoscopy. I had dreadful pain the other week, all bowel and stomach type stuff, stopped me from being able to tske DCs to their activity. I'm convinced it's endo though.

Sorry you are feeling so poorly, I would definitely call ooh, you need adequate pain relief. Endo is often misdiagnosed as IBS but as you’ve had endo removed from your bowel you’d think they’d take your pain more seriously.

Endo cannot be seen on a scan, unless it’s an endometrioma (endo cyst). Any gynae with brain cells would know that. Also your GP is full of crap, fibroids can cause pain regardless of size, afaik it depends on the location.

Is there a endo specialist based at your hospital? It really does sound like your endos back or possibly adhesions.

Don’t listen to any medical professionals who tell you it’s too soon for endo to come back. I’m 7 weeks on from my third surgery this year, each time I’ve had new endo growth. 7 weeks post surgery and I’m back to daily painkillers. Nepofam, tramadol, diclofenac and paracetamol all together just about take the edge off.

Please look into changing your GP and if you give a rough location I could check if there are any specialist near you.

Sorry if above doesn’t make sense, it’s taken me close to 20 mins to type it, I’m currently drunk on painkillers

I would really like to talk to the gynae who did my surgery but the gp won't do a nhs or private referral as he does not think more surgery would be in my best interest. I really feel I need better support with pain management as not having the codeine separately means I get into this sort of mess where I have taken paracetanol and can not take any pain relief. I have also just been sick when I drank water so worry I will struggle to keep painkillers down when able to take them.

Thanks for the reply I did not realize that endo could come back so quickly. Do you have any hormone treatment?

I am based in London and had the surgery by a specialist through private healthcare. However, follow up was difficult. The gynae at the nhs hospital was in a different area. I am worried they have put it down at as psychological as I cried when they said that they would discharge ne because the scan was clear as I wanted answers and adequate pain relief to take home.

Sorry that this doesn’t help you much right now, but codeine might not be helping you as well as an alternative may - because opiate based drugs slow down the bowel and can exacerbate problems with bowel related pain, including adhesions to it.
I’d not heard the “don’t take anti inflammatories with endo” thing, the suppositories help me with mine to a degree, but tens and heat are my life savers.

Have you ever tried hormones?

Some doctors tried the “are you sure you don’t just need a poo?” thing on me, but removing my natural hormone cycle by taking progesterone only removed the pain - so, during this time, did I not “just need a poo” then?

Again, it doesn’t help you immediately, and hormone control is not a treatment, but it might be worth trying to help give you another piece of the puzzle

P.s. scans don’t show endo. Laparoscopies do

The only hormone have tried has been the mirena coil at uni the pill seemed to redduce stomach pain.

Combined pill?

The problem I get is when the pain gets really bad I struggle to poo. If I use a glycerine supository I will go but do not think I am straight forwardly constipated its more I can't relax enough to go.

I ask as oestrogen in combined pill can exacerbate endo, whereas progesterone only is better at reducing symptoms

Yes it was the combined pill taken in a normal three weeks on week off pattern. To be honest the pains were not as bad ten years ago and I happily cane off the pill. Z I z

Have you tried fybogel to help keep stools naturally soft? (Doesn’t irritate the gut lining like other )

I had not had the endo diagnosis when put on the pill it was because I had had a hospital admission for suspected appendicitis and they thought maybe gynae as on period. I also wanted the controception so took it for this as well. Z

My sympathies - I’ve been admitted 3 times with right sided Abdo pain ‘Could be your appendix’ - so far never been my appendix. Last year was the worst ever, I ended up on very strong painkillers, had to push for a Gynae referral and finally got a laparoscopy and found and treated endo, pain went. This was after normal colonoscopy, gastroscopy, CTs with and without contrast, ultrasound scans...all normal.

I guess the question is what do you think/want OOH to do? You can take the co-codamol in a bit, I would suggest asking for something stronger on top - oramorph is a good option, can be used to top up codeine. I took pregablin (a nerve painkiller) in the end which made the pain bereable. I think OOH would want to admit you, if you don’t want to be admitted I would probably take the co-codamol, go back to the GP in the morning for better analgesia? I found the app ‘Pain relief’ (blue with a purple face) good if I was tense and thought it was exacerbating the pain. Sometimes it was the only thing that helped me sleep.

Most of the time I go to the toilet fine, if anything it is a bit loose. However it is only once the pain is bad I can't decide if normicol means this is better or if the extra fiber causes pain

So, when hormones are controlled, the pain is less. When hormones are doing their own thing, you’re in agony, yes?
Sounds like sensible evidence to take to a new gp to get another referral.

In the meantime, I’d going on progesterone feasible for you, to control the symptoms until they investigate/treat properly?
Or even ask about taking a pain management route (e.g. amitriptyline to alter the brains perception of the pain) in place of painkillers.
Tbh, I’d also recommend joining an endo group on Facebook for other people’s suggestions/support & recommendations.
Hope your pain eases for you soon

I am not sure what I would like ooh to do. I think either painkillers or antisickness so I will be able to keep the painkillers down.

Ultimately I would like something like amitriptiline as struggle to sleep with endo and sciatica.

I am not sure if I would feel more comfortable if admitted or if this is a waste of resources. The gp is only likely to offer a telephone appointment if I can get anything.