How do you find out if endometriosis has spread??

[BeUa]

Hi,

I am getting newer symptoms such as my bowel movements have altered, think I had a moment of blood not from the vagina. How do they check if something has progressed of the endometriosis? Is it still under gynae to check etc?

Many thanks

[jaclyt]

I’m guessing they can only truly tell by symptoms and doing a laparoscopy.

[Lex4]

Hi BeUa, I had this. First went to gynae and he confirmed it was common with stage 4 endo but he did also refer me to the bowel specialists to rule out anything else as the symptoms are very similar to some early cancer indicators. I had a sigmoidoscopy (which was unpleasant and uncomfortable but not painful as I had been expecting, and they have gas&air!) where they took biopsies to check out the bleeding they found but all clear on everything bar endo. Having this has led me onto the option of further surgery with a bowel team present as the start of these symptoms also (for me) caused a real hike in pain levels. So I would say it’s really worth discussing the symptoms with your consultant and seeing what they recommend.

[Jade2006 in reply to Lex4]

Iv just been told I have endometriosis on my bowel.Really worried about it , I’m down for urgent surgery I have no symptoms though apart from pelvic pain , I also have a small cyst on my only ovary.

Are you having the surgery?

[zbcq in reply to Jade2006]

Don’t panic. I have just gone through this… few months ago i heard for the first time about endo and that i had it after having bad bowel symptoms for years. I was told i had an 8cm cyst on my ovary and most likely bowel endo. I freaked out because endometriosis UK website had on its front page a brave girl who had bowel endo and ended up with a stoma bag and thought that was my destiny. Don’t worry, this is a very rare complication. What i would advise you is to go see a surgeon who only does endometriosis and who understands this very well. Make sure he practices endo a lot.

[Jade2006 in reply to zbcq]

Thank you , yes I am under a endo specialist after my surgery last year at a cancer hospital which thank god it wasn’t but ended up losing a ovary to a large cyst they just took it out.

[Jade2006 in reply to zbcq]

Did they talk about a bowel resection and stoma ?.

[zbcq in reply to Jade2006]

Yes he said he would perform bowel resection on me but turns out i didn’t need it when he operated on me and saw my lesions. On the stoma bag, if needed it is because your bowel/rectum scars didn’t heal properly post resection, and usually when needed, it should be in place only for a few months… surgeon had told me it’s an odd of around 5%. You should make sure you dont do anything that could put your immune system and scarring at risk such as smoking etc… I didn’t lose my ovary, he performed a novel technique called ethanol scleratherapy to remove the cyst which is more gentle than excision. I am testing my AMH again in a few months to see what was the impact. I had to get it in France because i found only one surgeon in UK who performed it and he did only once! I am very privileged that my insurance in UK was ready to pay for the surgery in France (which was less expensive than UK anyway). Honestly research endo specialists and see if they do any research / are in the forefront of techniques. I found that surgeons in France were more advanced in UK, i think same goes for Italy.

[Avourneen]

Gi and get a good quality scan TV ultrasound or MRI with a specialist sonograhper then you will be able to see exactly what is going on. I had one done in London it was a bit pricey but weel worth it. The doctor was brilliant he talked me through all the results and sent me a full report the next day now I can send this scan to my gynae and discuss the best treatemnet options. I wish I had done this years ago before it had sread so much.