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Endometriosis New Zealand

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Totally confused...

CassEscandon profile image
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Hi Ladies!

So here is my long story, that totally confuses me. (sorry for it being so long and boring lol) I am in need of any advice or if anyone has been through something similar. Since age 9 I have had my period.(with an exception of no period for 1 year well I was sick with anorexia at 18) My periods have always been very very bad. To me this was all I knew, so thought it was normal. I took 500mg annoprox like candy up until a year ago. The annoprox took the edge off, but for the most part didn't work. I was still in bed missing school/work a minimum of 1 day a month. I would be in bed shaking, dry heaving, sweating, and in excruciating pain. (unfortunately I am sure most can relate :( ). I was put on tordol which took the edge off for a few months. Now it is just back with a revengance. I have always had awful stomach aches and it just became part of my norm. Two years ago I seen a naturopath who told me to go gluten free which I did (and still am). My symptoms seem to go away for the most part for 6 months. (periods still the same with worst PMS). When my symptoms started coming back I thought they where GI related. I seen my naturopath who put me on a hypoallergenic elimination diet for 4 months. My symptoms where still there and up until now have been getting worst. Concluding it has nothing to do with food allergies. I seen an amazing GI specialist who did: blood, urine, stool sample, ultrasound, X-ray, upper GI scope, colonoscopy ext all coming back normal. With my pain still there and it not being only around my period I wasn't thinking Endo...Though I should have been as I have ALWAYS had gyno issues for as long as I can remember. (Always cysts as well). A lot of my symptoms and pain has to do with my left side along my colon. I am not even sure what to do at this point. I am waiting to see a new gyno and my appointment is not until December 1st. I am wondering what are peoples symptoms when dealing with intestinal endo. Thats the only thing I can think it would be as all else is coming back clear :( . My periods are terrible, but over the last 6 months it has just progressively gotten worst. I am now at the point where it is every day and not getting any better. I went to see my family doctor yesterday and all he did was give me: Ponstan to try as Toradol is not working. I won't take it when I'm not on my period because they hardly work. If I take it more often it won't work at all when I need it most lol. I find some relief when sitting down. I find the pain increases when standing up. At "random" times my stomach gets huge to about 3 months pre go and I am pretty thin.

Any advice or stories would be much appreciated. I am not even sure what is normal anymore. I am very confused. All I know is the pain is every day and relentless. A lot of my symptoms have to do with my bowls. For the most part I am going every day hard, firm BM's (sorry TMI). Bloated always, trapped gas, back pain, up around kidneys pain.

Thanks so much in advanced xoxo

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CassEscandon
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Hi

Endometriosis can only be diagnosed via laparoscopic surgery preferably performed by a gynaecologist with experience in treating and removing endo. We have heaps of info re treatment etc. on our website nzendo.org.nz/about-endomet....

Your GP will have sent you for the other tests first, to rule out a number of other things which maybe causing your pain. Daily pain which lasts longer than 6 months has often become what is termed a 'chronic condition' and requires the care of a team (including pain specialists) who understand and can offer the right kind of treatment and management together with the lifestyle changes you can do as well (nutrition - FODMAP diet, exercise, sleep and enjoying things). There are a few great websites with info re living with chronic pain:

-aci.health.nsw.gov.au/chron...

-And a new Australian one on pelvic pain pelvicpain.org.au/

There are various practitioners who specialises in treating pelvic pain including:

- Pain clinics or

- Pelvic Health & Musculoskeletal Physiotherapists or

- Osteopaths specialising in pelvic pain

and more.

When you met with the new gynae. you should have the opportunity to discuss surgery, recovery, on-going treatment, pain mgmt. etc. with him/her.

Endo NZ

CassEscandon profile image
CassEscandon in reply to

Thank you so much for this information and getting back to me! I truly appreciate it :) ! Very helpful as I am very confused right now. Thank you, now I have stuff to talk to the gyno about

splatteredmedia profile image
splatteredmedia

I changed to a more plant based diet and a lot of that went away. But now I am on a month with no real solid food. This disease is relentless, but I refuse to let it win. I drink protein shakes with pea protein to get enough nutrients.