endometriosis - pain worse since laparoscopy

[elementofsurprise]

So apparently I have only 'mild' endo (although there was one big patch). I know the pain felt does not reflect the severity, becaue lucky me is really feels it! (On a side note - how can labour pains be any worse? Surely I'd pass out! Childless to date...)

I had a lap in May. Also had coil fitted, removed after three weeks due to feeling horrendous mentally - really low and lethargic. (Have MH issues so this on top was awful.)

So had a sort of period after that which was painful but not horrific... then have had two 'real' periods. The first of these was like a 'bad' month pre-op... the second was the worst it's ever been. I had to lie down and close my eyes to avoid throwing up. Getting to the loo and back I felt like I was going to die. The codeine I usually take (about 240mg throughout the first day) did not seem to be touching the pain at all - usually after the first few hours I can carry on relatively normally (though feel high/spaced out!)

Usually I don't need painkillers the second day but since the lap the second day is also painful (though less so, more of a paracetamol/ibuprofen jobby).

Bit worried what this means. I will probably have to go on the pill when I go back to work, and I really don't want to. Fertility is also ticking away (i'm 30 and single).

Meant to add, as well as sickess/dizziness I felt completely shaky like I was going to collapse, also hot then cold... never had it to this extent before.

Hi, fellow suffer here. Things can get worse after a lap before they (hopefully) get better. It can take six months to see an improvement. Doctors are not always very good at conveying this! I'm guessing that the coil removal might not have improved things either. Your symptoms do seem extreme though, so may be worth getting checked out.

I had "mild" (hah!) undiagnosed endometriosis for many years and I winced in recognition at your symptoms.

Was the lap you had a purely diagnostic one or did the surgeon actually remove any endometriosis deposits by laser?. It sounds like some endometriosis was missed.

Did they talk to you a week or so post op to discuss the findings?. If that did not happen I would complain about that as well.

I would suggest that you see a gynae asap and preferably one who also has a specialist interest in endometriosis; such people do exist.

This is a good website:-

www.endometriosis-uk.org/

No, I haven't spoken to anyone post-op. Well, there was a quick debrief afterwards before I left hospital but I was a bit out of it still! Was actually going to speak to PALS about that cos I thought they should have some kind of basic info. leaflet to hand out or something... (even just for the fact you've been under GA.)

They did remove the endo - apparently was mainly one big patch (so I guess mild as in one place only) fusing togther ovary and bowel, actually the bowel symptoms are the one thing that's got better. Ovary apparently fine too. The gynae who did it is a specialist and was fantastic at explaining everything pre-op after I'd been dismissed by others (and agreed to op straight away.) So will try to get to speak to him via PALS I guess!

It's interesting pondering what endo might be... seeing as they don't really know! It definitely seems like some third process at work that causes the growth and pain, rather than it being the growth that causes the pain directly. Have suspicion stress etc may be a factor... trying to work on mental health as suspect my body is bearing the brunt of it.

"Well, there was a quick debrief afterwards before I left hospital but I was a bit out of it still! Was actually going to speak to PALS about that cos I thought they should have some kind of basic info. leaflet to hand out or something"

I would speak to PALS: it is poor practice on the part of the hospital to speak to you at all when you in recovery from surgery. You should have ideally had an appointment a week or so post op to discuss the findings of the lap operation.

You certainly need a further apt with this gynae who performed the op asap. He needs to know how you have been and are now.

What is still unknown is why some women get endometriosis in the first place. I found that stress did not cause the endo to become worse; the further spread of it throughout my uterus over the years caused it to become worse.

I definitely had post op follow up and then another appointment 3 months later with a physical exam (ah the joys)

This was private healthcare though, paid for through Dh's work so I don't know what the nhs do.

Recovery from the lap was 2 weeks for the pain of the op to stop and I returned to work battered and bruised.

Symptoms wise I was the same as before, so when I went back for the 3 month post op check it was revealed that the endo was worse and I had a very aggressive form of it.

I will say that labour was on a par pain wise, but you have access to drugs which helps gas and air was terrific, and pethidine.

I did everything I could to help the symptoms, read as much as I could (lap was 13 years ago now) overhauled my diet, had acupuncture, did relaxation yoga which all helped.

The thing that helped the most was not working. By a quirk of a job move for Dh we relocated and I realised my health massively improved. That was 11 years ago. Ds1 is 12.