Still in pain after lap

[Kangalou]

Hi all

I had my first lap four weeks ago and nothing has improved pain wise. I still have lots of abdo pain - mix of dull, sharp and stabbing pain - as well as constant lower back ache... which sometimes spreads down my legs. Periods are heavy. Pain is all day every day... worse at ovulation and during period.

I was due to see my consultant in two weeks’ time but having been to my GP to ask for stronger pain relief she organised for my appointment to be brought forward to last night.

Having reflected in the consultation, it was a little odd. I’ve walked away with a prescription for decapeptyl, supplemented with some HRT and amitryptaline for pain.

However, what’s odd is that he was suggesting that part of my pain may not be gynaecological... yet he’s pushing on with what I would consider to be quite drastic treatment. He said the back ache could be simply back ache (agree, but think unlikely as feels like the sort of pre menstrual back ache I used to get), there could be pain from constipation due to the pain relief I’m on (but I don’t feel constipated) etc, that the ongoing pain could just be due to constant use of painkillers which are perpetuating the pain I’m in.

Has anyone else been in this position? My endo is ‘mild’ (stage 2) though nothing that I’m experiencing feels mild to me!

I guess I can see why he’s prescribing this stuff... but it feels very drastic if he’s unconvinced it will work.

I’d really appreciate hearing of anyone else who didn’t feel better post lap and understand what their next steps were .... and how they got on.

Thank you and have a lovely long weekend xx

Has anyone else been in this position?

[Starry]

Hey xx 4 weeks is still quite early in the internal healing process and there are lots of possible causes of pain. It takes the body around 12 weeks to heal internally even though it's a small entry wound. It took me longer than that for my symptoms to stabilise.

Here a description of the body's healing process which I found useful.

centerforendo.com/is-my-end...

Where were you operated on? Has adenomyosis been considered (endo inside uterus lining) it can cause heavy periods and pain even if endo elsewhere has been treated?

Could the back pain be referred pain due to inflammation? Could you try lactulose or movicol for a few days in case you are a little backed up or slowed down by pain meds?

I developed the pain you mention running down my legs at about the 4 week mark. I first saw my surgeon who said it was a good thing that all the nerves still worked (my surgery was for stage 4 and very extensive) I since saw a pain specialist who thinks it may be nerve irritation or compression due to inflammation which can happen and sometimes subsides and sometimes doesnt. Mine hasn't at 8 months and I've been offered injections, though it is possible it's neuropathic pain due to an overloaded pain nervous system stopping working right.

Take care xx

[Kangalou in reply to Starry]

Aw thank you for this. It sounds like you’ve had a rough time.

I was operated on at a private hospital and I didn’t get a picture last night whether the consultant had looked for adenomyosis but he did mention last night that the decapeptyl would help with this and the endo.

I am already taking lactulose and fybogel for constipation.

If I’m honest, I did expect him to say that it was early days and to keep taking the pain relief. He seems to think I should feel a bit better by now.

Sorry... it’s all just a bit of a moan really. Constant pain is just rubbish!

I hope your pain improves. Take care xx

[Starry in reply to Kangalou]

Hugs x

Thanks. Yes. Its been an interesting couple of years.

Try not to worry, everyone recovers at different speeds and grading and symptom severity don't correlate. Someone told me it takes as a rule of thumb a month per hour under to recover just from the anaesthesia drugs.

If the lactulose and fybogel is working it would seem less likely its constipation, though I've been told the bowel can puff up and take time to go back to normal. I took lactulose for a long while after my bowel surgery as things struggled to get going and I was often told here that movicol was better than lactulose though I'm not sure why. I do wonder looking back if taking lactulose for quite so long, it being sugar, didn't encourage the wrong type of gut bacteria though and might possibly have contributed a bit to bloating and me developing reflux. Just a speculative thought though. Most of my post op problems were due to getting viral meningitis so I'm not a 'typical' case.

A hysteroscopy and biopsy is the most usual method to diagnose adeno I think (I don't have it so am not sure) I'd have thought you would probably have had to have been consented for those procedures in advance.

Do you know if the surgeon got it all or did they need to leave any, eg due to bowel proximity? There is reference to using GnrH post surgery in the ehrse section guidelines. I hope it works for you. Hormones didn't agree with me unfortunately.

google.co.uk/url?sa=t&sourc...

Yes constant pain utterly sucks. I attempted a return to work at 4 months which was disastrous, but did turn a corner around 6. I'm sort of reaching a point of coming to terms or perhaps negotiating a truce with what I've been left with rather that fighting it so angrily as I had been which is helping me mentally a bit. The pain specialist was a difficult event for me but very useful. I'm now reading the nevillle shore 'coping with pain book' and pre gabalin does seem to have taken the edge off things enough to get me able to start phasing into part time work again.

Thinking of you xx

[Kangalou in reply to Starry]

Aw - I’m thinking of you too! I’ve been really struck by all the horrific experiences people have shared here. I only joined recently.

Thank you for taking the time to reply - I really appreciate it. I didn’t have a hysteroscopy so I’m guessing there’s no conclusion on adeno. My consultant has also requested an MRI - not sure why, and am guessing it wouldn’t show up adeno anyway.

The surgeon said he was confident he’d got it all. He is lovely but I have a nagging doubt that he’s not the best man for the job. I was initially referred due to an ovarian cyst - so I picked him as he was recommended for that. He also has a stated interest in endo but doesn’t work in the local BSGE centre.

I am assuming it can’t recur all that quickly... although I’m guessing it builds up after each period.

Off to read these guidelines now. Thank you so much. Take care xx