Endometreosis - Any experiences

[nearlyuptheduff]

I am in the process of being tested and diagnosed.... any helpful experiences and or advice?

Sorry to read that.

What alerted you and them to the possibility you may have endometriosis?

How are they testing you?. I ask this as it is not usually picked up through either blood tests or ultrasound scans.

Endo is usually diagnosed through a keyhole surgery operation called a laparoscopy. I had mine treated through such keyhole surgery; the endo deposits were lasered out but they can return. My surgery was helpful but even now I get the occasional pains as a result of endo (I keep it in abeyance by using the pill).

www.endo.org.uk is a useful website if you want to learn more.

Any other questions just ask.

it hurts like hell. For me it was worst every other month. The pain was so bad it usually made me sick.

What solved it was surgery (and the doctors did not know it was there until they had removed the affected tissue and sent it to the lab). Being on the pill/ mirena helps too though.

Did you have a caesarian other surgery on your uterus at some time in the past? My gynaecologist seemed to think that this was how the cells leaked out of my womb.

My period pain was akin to labour pains, but without the nice bit at the end. I only had a small amount, but enough to cause me massive pain, whilst some women are riddled with it and feel nothing.

I had a laparoscopy, where they used a Helica laser to zap it off, plus a hysteroscopy (camera through the cervix), a D&C and then a mirena coil fitted at the same time. That was 7 years ago, and I'm still pain and period free on my second mirena. I hope your result is as positive as mine.

Anice, my gynae thought the same.

Hi I have Endo. At the minute I am pain free (YAY) and have been for almost a year, but downside is that I had to go back on the pill after two surgeries and have given up our dream of a 2nd DC.

It's good that you are getting investigated, sometimes it can take a long time for doctors to recognise that period pain can be something more. TBH until you have the diagnosis it's difficult to say much more as I don't want to alarm you as I know people that have had it lasered and been perfectly fine ever since and have gone on to conceive ( assume from your user name that this is why it has been diagnosed)

Oh and the website Attila recommends is a great source of knowledge, but I'd be a bit wary about the forum at this stage as some of the folks on it have serious long term chronic conditions which may not bear any resemblence to you.

Good luck with your tests.

iv had it since i was 15 altuogh the gp said it couldnt be that cos iwas too young but as my mum had a friend who'd had it and was fobbed off by her gp and ended up infertile because of where it was(on her tubes) i stuck to my guns and they referred me. I had a lap to 'diagnose' it and then got given this tablet to take for 9 months( mimicking pregnancy) to try and get rid of it which worked for a while but then it came back so they did another lap and lasered it off. This also worked for a while but it then came back. I then got prescribed the pill and was told to take 3 packets without a break and then have the 7 day break cos id have fewer periods a year then. The pain was worst for me every 3rd month. i did that for a bit and then went down to taking 2 packets without a break and then down to just taking it normally. i have to say that the only thing that truly helped was having my first baby! Which is actually what they said to me at the begining.( not sure telling a 15 to get pregnant is the best advice though!!)
To manage the pain i used to use a tens machine which i would wear practically all day! I don't like the thought of filling my body with tablets and used to get withdrawell symptons from the really strong painkillers they presribed for me.

So my advice would be don't let them fob you off, you know your body best
And get a tens machine they are fab. ( also have a baby if poss! )
The website that Atilla linked too is a good source of info.
Hope you get it sorted and under control.

Thanks all, at the scan stage at at the moment. Just not too sure what to expect...

Will hopefully get some sensible feedback after the scan and some help towards making every month less painful!

What sort of scan are they proposing here?.

I only ask this because if they are planning on doing an internal ultrasound scan, that in itself will not detect any endo deposits.

Don't let them mess you around, it is all too easy to get fobbed off.

You will need to be persistant in order to get answers.

Hi I'm having my laperoscopy and hysteroscopy done at the end of May and having the Mirena coil fitted at the same time. Hoping that will be the end of it - been in pain almost constantly for nearly 6 months now. (I know, there are a lot of people out there who are a lot worse off than me!!)

Agree with Attila. I had a scan and they didn't detect the endo and the lady doing it was very sniffy about my cyst, saying that it wasn't that big and I shouldn't really be in pain. It put me off getting proper help for another 6 months and it was only because I was in such pain all the time and then remembered that I could get referred to a consultant via my works health cover that I actually went back