A few questions...

[medicmum]

I hope this post isn't too long and self indulgent, just trying to get my head round a couple of things and hope someone can help...

I have had horrendous periods since about the age of 15 but when I first started at 12 they were pain-free. I would feel dizzy and sick, get diarhoea, go pale and sweaty and nearly pass out with the pain. The pain would sometimes spread down my legs but was mainly in my tummy, and pain would start a couple of days beforehand and stay bad for the first few days.

When I fell pregnant with my daughter, I didn't realise I was pregnant to start with because I was getting what I thought was period pain so was convinced I was about to get my period. When I found out I was pg I was delighted but of course worried as I was getting these pains. However the pregnancy was fine and eventually the pain went.

I had my dd by cs as she was breech and I breastfed. I didn't get my first period til she was about 6 months and I was relieved that they seemed to be less painful than before, though as I was still breastfeeding I didn't hold my breath! My partner and I had an "accident" when she was about 8 months so I decided to get a copper coil fitted as an emergency, I knew this might be a bad idea, but I figured if I didn't get on with it I could have it taken out - I didn't get on with hormonal contraception and clearly condoms weren't working for us!

The fitting was horrendous, I was in agony afterwards and bled quite heavily. My periods were defi itely heavier and probably more painful than before, but not more painful than before my pregnancy. Around this time I started to get what I thought was back ache and leg pain. It felt like period pain in nature but when I checked my dates my period wasn't due for a couple of weeks so I put it down to being on my feet all day on a uni placement. However I noticed the pain got worse and worse as my period approached, then I would have a brief pain free window after my period, then the cycle would start again.

I went to the drs. They said it wouldn't be the coil unless it was in the wrong place or I had an infection. I was investigated at first for fibroids, had a scan, coil in correct place, no fibroids, ovaries fine etc, but there was free fluid. Probable endometriosis was suggested. Had. Y first lap in may, minimal endometriosis at various places on left side where I was getting all the pain, this was all diathermied "successfully" and copper coil removed and mirena put in. Gynaecologist was satisfied they had removed it all and mirena should stop it coming back, but said I could arrange to see her again if I wanted.

When I had the op I was in a "pain free" part of my cycle. When I come round I had no pain whatsoever in my lower pelvis where I normally get the pain and where I had the "work" done, the only pain was from my belly button wound where I later got an infection. However about 2 weeks later I got crippling pain in the usual places. I was worried the infection my have spread internally so went to the gp. He assured me this wasn't the case and asked me where in my cycle I was. I was about a week away from my period, when I would usually get endo pain. He said this is probably what it was, but not necessarily mean the operation wasn't successful?! How can I still be getting endo pain if there is no endo there? 

I have not had a proper period since having the mirena, just the odd bit of spotting, which is great obviously, but thing is I have been getting just as much pain if not more. At first it seemed to follow what would have been my usual cycle but with no bleeding, but now I just seem to be getting it intermittently all the time.

I have booked an apt to see my gynae in a couple of weeks, and I have been back to my gp just to get my pain meds sorted as I had let them all run out as I had hoped the pain would be gone! 

So I guess my questions are: why am I getting pain if I have no endo? Will the mirena settle it down or is this as good as it's gonna get? Is it likely I had endo before my pregnancy and then it went and is now coming back, if so is it likely to keep getting worse? Would the copper coil have made the pair worse, if so will the mirena possibly make it worse too?

I hated my lap, I had an infection and it took me ages to get over, I really don't want to go through that again. I know many of you are far worse off so sorry for being so self indulgent. I also know I have seen similar posts before, but for some reason I am not finding them when I search. Any advice from anyone who has been through similar would be amazing.

[Chrissie66]

Hi medicmum and I am sorry you are going through such a rough time

The thing is....there isn't a cure for endometriosis. Once you've got it, you've got it. They can remove what's there when they you open you up, so in that sense your op probably was 'successful', but it will grow back. So I would imagine that the pain you are having now is being caused by the new growth of endo.

If it was in the right place, I doubt that the copper coil would have made the pain worse, it was probably just a coincidence that you had it put in at the time when the endo was re-emerging. My Mirena hasn't made my pain worse, but it hasn't significantly improved it; on the other hand it has been a Godsend in terms of blood loss, I've gone from flooding every month to just a tiny bit of spotting (although mine has run out now, and I'm waiting for an appointment to have it removed and have a new one put in).

So basically - yes, this is probably how it's going to be from now on. If you're planning on having more children then they'll need to keep on top of it, but otherwise you need to be looking at ways of managing the symptoms. Speak to your GP about the options first and if that doesn't work try and get a referral to a pain clinic.

I'm sorry not to have better news, and I hope you manage to work out a pain plan that works for you

C x

[Hidden]

Hi there,

Same advise as above really. Endo can be controlled and you can learn to live with it but it cannot be cured. Mostly the problems from it will be there until menopause.

I had a similar situation to you but without a pregnancy. The Mirena didn't suit me so it was removed for hormone related side effects after 7 months. It may have been coincidence as I might still have been healing inside but my pain has been better since it has been out, or maybe I am just coping better because I'm only dealing with pain not side effects too!

There are plenty of ways to help yourself and work out how you can manage your own symptoms. Every woman with endo has a different experience and a unique way of coping. I find I get side effects from ibuprofen and codeine (or similar) so I pretty much just take paracetamol and use heat, TENS or exercise for pain control.

I have found the support group & support network with Endometriosis UK really useful in coping. There are women with experiences of so many aspects of the condition and treatments that it is a fantastic place to go for information and support. The support group page of the website is here endometriosis-uk.org/suppor... and there is a helpline too.

Hope this is useful

xXx

[mablesky]

Hello I had laser lap last sept for endo the surgeon said i should be free of it for around 5 years as i had a marina fitted at the same time and the operation "was successful" (I think he was trying to be positve!!)I was ok up until 2 months ago where i went in to have an ovarian cyst and blocked infected fallopin tube sorted and yes they said they had found new regrowth endo.I couldnt believe it but it does appear it can grow back im afraid.im still fairly new to this and im learning all of the time about this awful disease but what i have learnt is that everyone is so different.hope fully the gaeni can give you some answers about the pain you are in.really hope you find some relief take carex

[medicmum]

Thank you all so much for your replies! I suppose I was always aware that a lap wouldn't necessarily be the end of it all, I knew that endo was a chronic condition, but I did hope that as it was minimal and they seemed so confident that had zapped what was there (she wouldn't have seen me at all for follow up if i had not asked recently), I would at least get some relief for a period of time, but really the pain was back no better than it usually was, within 2 weeks! Oh well. I guess I'm just really puzzled, I wonder if I've always had its my periods have always been so bad, but saying that the pain distribution and pattern is different now, albeit not really any more severe, and I suppose I would have had a higher grade if I'd had it longer, but there were no major adhesions etc and the consultant was confident my fertility shouldn't be affected. I just guess it seems weird it all came on after a pregnancy. I know I just need to ask the consultant all these things, but the apts always feel so rushed and I always forget what I wanted to say. My knowledge of endo all comes from being a medical student, I have never felt I have been given much info by anyone looking after me. Anyway sorry for whining on, I know I am far luckier than some, I wish you all the best of luck on your endo journeys.

Incidentally my friend has recently pretty much been diagnosed, she was getting chronic pain and they saw a large cyst on her ovary on scan. She is adamant she doesn't want an op as she is petrified of hospitals since her dad died of cancer, so they are managing her medically. I can't say I blame her tbh as my lap diesn't seem to have done me much good and it really was awful to get over.

[medicmum]

One more thing, I have noticed on my letter that the lesions they found were mainly clear blebs and hyper vascularisation. Cear blebs usually mean early disease din't they? Does this mean it has more potential to get worse quickly? If I had endo before and the pregnancy made it recede would it have disappeared completely or would there have been old scarring?

Also, in terms of medical treatment, are gnrh analogues eg. Zoladex etc anymore effective than progestins (mirena etc) at controlling the pain? Ate they worth the side effects? Does the endo come back immediately after stooping them or does it subside for a while? Sorry for all the questions!