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Tell me about endermetriosis?

(6 Posts)
mummatoone Mon 17-Aug-09 18:00:23

Got a referal to see a gyno as my Dr thinks I may have this - painful periods every other month, very severe pain....nearly passing out.

She said they may give me a scan or a lapo and if the latter if there is anything there they will burn it away.

Im scared stiff and wanted to here from others how they go on, cope etc...

Vigilanteawarenessraiser Mon 17-Aug-09 18:54:54

Hello mummatoone - sorry you're ill. There are lots of people on here who have it. What do you want to know, in particular?
Have you seen Panicpants' thread here on bad period pain? I put some info on treatment options on there, and some links, and Rookiemater put some useful stuff on pain relief. There was also a thread a few weeks ago by Geordieminx (where is she?) that you might find useful, but I don't know how to find it - in general health somewhere.

I've had very severe endo, but am now in remission, and have been for a year and a half, after extensive surgery and 9 months of decapeptyl. I'm currently using a natural hormonal treatment (link on the other thread) to keep it from coming back. I have been left with bowel problems from the damage done, but these are slowly improving and I'm otherwise fine. Life has improved a lot since I was operated on, and I'm feeling quite optomistic.
Hopefully Rookiemater or Atillathemeerkat will be along soon to tell more.

I have found getting involved with a support group is one of the most useful things I did. I thought it would be depressing but it's not, really - everyone understands everyone else's problems as they all suffer them themselves. Find your local group here.

Hope this helps.

mummatoone Mon 17-Aug-09 21:10:21

Hi Vig - many thanks for your words, Im not sure if I do have it or I have a mild form as it only comes during my period for a day or so but the pain is to die for. I will have a read of these threads

Vigilanteawarenessraiser Mon 17-Aug-09 22:05:56

Ok, have a read. DOn't be too scared - having a lap is not nearly as bad as you'd think. Once you've done it once, it's not so scary any more smile.

Symptoms can vary hugely from person to person, but if the pain is that bad, chances are there's something not right. Has the Dr discussed other possibilities, like fibroids?

mummatoone Mon 17-Aug-09 22:29:23

no - as periods not heavy just for one or two days, no break through bleeding any other times etc... no bowel problems either she noted

AttilaTheMeerkat Tue 18-Aug-09 13:36:06

mummatoone

Good on you to have received a referral to a gynae. You will need to be persistant in order to get answers, be both polite and assertive with the gynae. Write down anything you want to ask him well ahead of time. Keeping a symptom/pain diary is a good idea as well to show them.

Do not be at all surpised at all if an ultrasound scan reveals no apparant problems. Endometriosis deposits do NOT show up on any ultrasound scan and I've had more internal scans than I could mention.

I have a "mild" form of this disease; I have had period problems since I started menstruating at 14 (I realise this was due now to endo) and lived in ignorance for years. It was only when I was operated on for another subfertility related issue (unrelated to endo) at 31 that the endometriosis deposits were discovered and lasered out (I had laparoscopic type surgery. Saw the photos as well post op, these were with my agreement also used for training purposes). It can recur post surgery and I get flare ups now and again but its certainly not as bad as pre surgery. In my case the pill has lessened the symptoms but it is not a cure all by any means.

Would suggest you look at www.endo.org.uk for further information and support; this is the website of the charity Endometriosis UK which campaigns for greater awareness of this disease.

This is not at all representative of all the symptoms of endo but the following problems were my symptoms pre surgery:-

heaviness of period
pelvic pain
stomach cramps
painful periods leading up to and in the days of menstruation itself
pains down legs - both front and back of legs were affected by this
shooting rectal pains
brown clots of "old" blood/brown stringey like bits (classic endo symptom apparantly)
loss of large clots during a period
back pain during periods
I had to lie down on numerous occasions due to the pain.

A Big Shout Out to Vigilante - hello there!!!.

Any other questions else just ask.

Attila x

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