Has anyone had to see a pain specialist for post-op pain?

[hayls]

Hi

I had a major lap nearly 5 weeks ago and woke up in agony in the recovery room. Whilst the normal post op pain has calmed down a lot since, the pain in my side has not gone away at all and morphine doesn't even touch it, my consultant thinks its nerve damage and its not gynae pain, he has made an appointment for me with a pain specialist for tomorrow. I was just wondering if anyone else has had anything similar? I know its not just normal post op pain but am worried that because its only 5 weeks since my op the pain specialist will say its too soon and they can't do much but I'm struggling to put up with it and my insurance company will only cover me for one consultation with the pain specialist x

[Mirmir]

Hi,

I'm afraid I can't help since I have not had this situation myself, but I am due for a major excision lap over the next few months and I am concerned that what seems to have happened to you will also happen to me. I already have chronic pelvic pain. The consultant that I saw recently was not willing to say whether increased (rather than decreased) pain might be a possibility afterwards. He said they only see about 10-12 cases a year of the presentation of endo that I've got, and they haven't collated any formal data about these cases as yet.

What did you have done? I have a large nodule of endo high up in the pouch of douglas, near the top of the rectum.

I think the best thing you can do is stick to your guns, listen to your intuition, and strongly reiterate to the consultant that you are almost certain it is not just ordinary post-op pain. He may want to put you on Amitriptylene, Duloxetine (anti-depressant), Gabapentin or Pregabalin (anti-epileptic). These can help with post-operative neuropathic pain but do also have side effects and can be difficult to come off, so its good that you are seeing a pain specialist and if you do end up using any of them, it should ideally be under his/her ongoing supervision. Treatment for this type of pain with these types of drugs actually has the potential to address the problem and resolve it, if it is undertaken over a period of about 6-12 months - so there is hope!

Good luck - let us know how you get on!

Miriam :o)

[geminijo]

Hi I too have been referred to a pain nurse, I'm 6 wks post op my pain was manageable for 1st wk now pains are worse than before op, I now have added pains in my hips which goes down my legs, back pain which is making hard to move and walk, the top of my left leg is numb. These pains on top of really sharp tummy pain. No appointment in sight. If when you've seen ur pain nurse tomorrow, any tips you could pass on would be gratefully received. xx

Hope all goes well for you and they can relieve your pain take care xx

[Mirmir]

Hi Geminijo,

Sorry to hear the lap seems to have made the pain worse.

What did you get done?

Miriam

[geminijo in reply to Mirmir]

I had to have organ separated and endo, scare tissue removed, I have a fyboid but they left that in for now . sorry spelling is shocking. x

[hayls]

Hi all

Thanks for the replies, had another awful nights sleep so not looking forward to the 2 hour journey to the hospital later! Geminijo our situations sound really similar. I had major laps in August and October, I recovered well from the first and naively thought the second op was less work than the first but didnt turn out that way, the op that has caused the pain was to unstick bowel and uterus, remove large nodule of deep infiltrating endo from uteral ligament and unstick ovary again!! ( It had been unstuck 8 weeks earlier and I hadn't had any periods in between but still managed to get stuck!). After my op the anesthetist told me he was surprised at the level of dissecting the surgeons had to do and thats what most of my pain was from, but the pain in my tummy that hasnt gone away is no where near anything they actually operated on but is where they have cut inside near my belly button in between two of my wounds. Really interesting you are having pains in your legs as well as that's mainly what's stopping me sleep and particularly in my left hip, its driving me mad. I wasn't in any gynae pain at the time of these ops as I've been on prostap for nearly a year and it is definitely not gynae pain at the mo. Geminijo I will let you know what the pain consultant recommends - I'm not leaving without some actual advice as he's charging £300 for the appointment!! x

[hayls]

So I've seen the pain specialist now, he was really good and agreed that its not standard post op pain. He thinks its muscle damage that will resolve in time but could take quite a while so has given me a drug to help but he said if its that it will ve painful for a while and I will need to stay on oramorph for quite a while. He could have given me an injection to help but as the area is hypersensitive it could have made things worse. He is also really concerned from other symtons that it could be a blood clot inside the muscle with an infection inside the blood clot, if its that antibiotics won't work and it would have to be cut out, meaning another op it would be found by ultrasound scan which will requested if the other drug he is giving me doesn't have any effect by the end of next week. So all in all not great but hopefully getting sorted!

[Aimee1517]

Just found this post and so relieved that I am not alone. Sorry there wasn't better news for you, It's been 5 months since my lap where they separated organs due to adhesions and endo. I have been in constant pain since op and on oramorph. Scans etc showing nothing but that's the same as before the lap, the pain in my back and legs is horrendous along with feeling like my belly is on fire nd I am exhausted all the time, the only option I have left according to gyne is another lap, I don't think I can go through that again and I definately can't afford another 3 months off work. They did mention nerve damage but this wasn't followed up. It's making me so depressed but knowing I am not alone helps. Not that I am happy anyone is going through this. I often wonder if it was a male problem would they have found a cure by now!

Good luck, I hope they manage to find something to help you. If I come up with a miracle I'll let you know.

[johubb55]

Hi all,

I'm so pleased I've found this thread. I had a minor diagnostic lap 7 days ago when they found extensive endo (I could have diagnosed that for them without the lap, it's only been 10years of telling me it's IBS to get to this point!). They didn't operate as they said I need a major op for it. Until yesterday I felt ok but since then the pain under my belly button incision is absolutely horrific. I've never felt pain like it and can't stand or walk at all. The doc reckons its bruising and nerve damage and has given me amitryptilene (can't spell!) but I don't feel happy taking this at all. Basically he told me to take paracetamol otherwise and that the pain should go in a few days. Given how bad the pain is, I don't see how it will have gone by then and I'm totally lost at what to do! I'm now dreading my major op. I was researching ablation for endo and found lots of things saying it's no good and grows back worse. Has anyone found this? One private specialist (I can't afford) talks about the only way to treat it is by peritoneum excision as ablation simply burns the top layer off. My surgeon last week said that once it is a lates it will be gone forever but there is nothing I've read anywhere that says this is a curable disease at all! I'm so lost with what to do and feel totally hopeless now! I can't decide if I should bug the clinic I went to for my lap about the pain I'm getting now or not? It's amazing how this horrible disease and the horrible procedures we have to endure makes you feel so isolated and lonely! All my family seem to think everything is great as they found my Fallopian tubes weren't blocked (my partner and I have been trying to get pregnant for two years) but the diagnosis of extensive endo all over my peritoneum feels like the most devastating news for me and I can't feel happy at all!! Can anyone else relate to any of this?