Can you have endo if it's not on ovaries?

Hi, I was just wondering can you have endometriosis if it isn't found on your ovaries? My GP says she has seen it happen where endo is located to one area but not necessarily the ovaries. I was referred for a lap and she asked him to look on the bowel as we were certain ovaries would be clear but she suspected endo of the bowel. The surgeon was reluctant to even do the lap but he did it and afterwards his assistant informed us he didn't look at the bowel as ovaries were clear and it would of been on ovaries if it was elsewhere too. I was devastated. My GP was reassuring and suggested we just keep treating it as endo. Things are getting worse so I was referred to gastro, this time the thought was maybe induce a bleed and have a colonoscopy and see if endo can b found (I've previously had 3 colonoscopies-1 found something unidentified, 2 found nothing). The gastro won't do the test and feels it can't be endo of the bowel as it would be on the ovaries too and he reckons it would be very hard to find on colonoscopy anyway. They are going to test for other things and mean while I just feel lost. I'm on the pill constantly but I'm aware when off it, I get nosebleeds, sinus infections, severe pain, diarrhoea, severe leg pain, back pain, severe cramps etc etc. this tablet allows me to work but if I don't have endo then could I be exposing myself to higher risks from tablets in the future. my GP has discussed the idea of putting me into early menopause or upping hormone meds to ridiculously high amounts and I'm nervous about doing this. Just wanted to get other peoples opinions on your own experiences?

Cheers

Grace

6 Replies

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  • I've just had my lap. They found endo on my bladder. They didn't mention having any on my ovaries or anywhere else. In fact only place they found was on back of my bladder.

    It sounds ridiculous that they didn't even look elsewhere. Maybe you don't have endometrioma (chocolate cyst on ovary) but you could still have endo elsewhere. You could also have adenomyosis (endo in lining of womb). Adenomyosis is often not visible with naked eye so they take biopsies or its sometimes visible on mri.

    I'm having a follow up soon and getting a referral to urology as I've been getting severe kidney pain. I want to know if endo is on the inside of my bladder as well and if it isn't then they really need to figure out what's causing me kidney pain.

    Hope this helps.

    xx

  • That's the biggest load of rubbish I have ever heard you can get endo anywhere and it does NOT have to be on the ovaries to be anywhere else and whoever said this really does need educating.. I have it on my ureter but wasn't found anywhere else.

    My best advise to you would be to educate yourself all information you may need can be found on endopedia.

    Good luck

    Sharon

  • Hi Grace, I was diagnosed with endometriosis when I was 17 I am now 39, when diagnosed it was found in my ligaments and pouch of Douglas. The past 20 years it has spread almost everywhere but it has never hit my ovaries.

    It does not have to be on the ovaries at all, I would ask to have a second opinion before you continue taking all kinds of medications.

    Jo.

  • I have just had a total hysterectomy - endo was found on bladder in ligaments and in pouch but NOTHING on ovaries so I can confirm 100% for you that this is not true. Unfortunately doctors will keep refusing to listen to us women - the ones that know! Good luck to you x

  • Omg what a load of rubbish. It can actually be anywhere and not affect the ovarires. This is why some women have a hysterectomy but have their ovarires left in place.Please ask your gp for a referral to see a Endo specialist who will know what he/she is talking about. And also what they are looking for. Some doctors just haven't got a clue. Good luck and be strong to fight for what you believe is right.It is your body after all and you know what you are feeling. Xxx

  • Hi Grace

    It is quite terrifying that you have been told such information and more so that a gastro consultant feels qualified to comment! You must arrange to be seen by an accredited endometriosis specialist as soon as possible. These are listed on the website of the British Society of Gynaecological Endoscopy at the Royal College (link at the bottom). You can see anyone you want wherever you live under NHS Choices and it is worth travelling to the best, who is acknowledged as Mr Ashwini Trehan in Yorkshire. GPs and gynaecologists seem to know nothing about this list but the NHS's own guidelines (NICE) say that endo should be treated in such a Centre of Excellence. Take a copy of the list to you GP and ask for a referral. She sounds cooperative. By the way my endo was only found in the Pouch of Douglas (a hidden space between the back of the uterus and bowel) at age 56 in the form of a huge rupturing endometrioma caused by oestrogen therapy after a hysterectomy and removal of both ovaries many years earlier. Both were found to be completely free of disease. I had 6 hours of radical excision by Mr Trehan 6 years ago and so far have not looked back.

    Do not take any meds. Endo is an autoimmune disease and most women have lots of chemical allergies due to a compromised immune system, in particular allergy to their own hormones. The minute I came off the pill (which reduces oestrogen levels) I had constant colds and ear infections, but also dizziness, blurred vision, total fatigue, mental confusion and memory loss all due to allergy to my own oestrogen. People with endo should keep off all meds and eat foods with no chemicals in.

    bsge.org.uk/ec-BSGE-accredi...

    endometriosis-consultant.co.uk

    Take care x

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