Is this diagnosis and treatment normal?

I've been diagnosed with endometriosis after ultrasounds and MRI scan. The gynaecologist has suggested an operation to remove my ovaries to stop the cysts. I've read that a laparoscopy is the definitive method of diagnosis but no one has mentioned this so far, nor have I found anything to suggest this operation would b advisable. Does this sound a normal process so far? Also does anyone have headaches associated with Endometriosis?

7 Replies

  • No this isn't normal or correct. Is it just the cysts that have shown on the scans or is there evidence of endo elsewhere? Ovarian endo would normally be associated with endo elsewhere, often deep behind the uterus. Laparoscopy is the definitive way to diagnose peritoneal endo (the most common form that attaches to the pelvic lining) but deep endo won't necessarily be visible at a lap. So a combination of all procedures covers all possibilities. But going back to the question of the ovaries, the cysts should be excised. The underpinning principle of endo treatment is to remove disease not organs. If you are in England I suggest you request a referral to a BSGE endo centre.

  • Hi Lindle, thanks for the message. They seem to be jumping to surgery without the Laparoscopy but also thy say I have lots of cysts, some chocolate cysts, which may be attached to the bowel. A bowel specialist surgeon would be present at the op. Because I'm 44 he suggested taking the ovaries now as they endo is fed by the cycle of the ovaries and by 50 the menopause would start and the endo would stop. This surgery would start the menopause immediately which has its own problems. I'm just completely confused. No where else is this path described as a 'cure'. I'm speaking to my GP tomorrow who referred me in the first place to discuss. Has anyone lose been given thIs surgery as an option?

  • Unfortunately menopause doesn't cure endo because it can produce its own oestrogen within its own cells without the need of ovaries. Women with mild endo may find that it quietens it down and gives no more problems but severe endo is more likely to continue giving problems. The presence of endometriomas often suggests potential deep endo and if bowel involvement is already suspected and you are in the UK this must only be dealt with in a BSGE centre. A general gynaecologist isn't allowed to touch it. The NHS England contract for treatment of severe endo confirms this. So you really need a referral to a centre but getting one it may depend on where you are in the UK.

    I have a facebook support group with lots of files including the NHS contract if you would like to join:


  • Agree with Lindle... it is not the normal process, i also have recurring cysts in my ovaries due to endo. But i had a cyctectomy to remove those which grew more than 4cm. There might be repercussions of removing ovaries and please get second opinion before you go through it.

  • Defo go get a second opinion, ask gp for a refferal to a bsge specialist centre, x

  • Hi Bernie,

    If I may tell you my own diagnosis experience. Well, I was diagnosed in China and the approach is different form here in the west. What my gynachologist did was first a ultrasound (this on the first appointment that I my gp said I should see a gynachologist, and I did go to my doctor because I was always tired, with pains, etc. So I though I had, again, anemy with iron deficiency). So the gynachologist found some cysts, different sizes etc, and I had pain during the vaginal ultrasound and the one she did with her hands (I never remember the names for this ones :)

    Because of the cysts the gynachologist asked for blood exams on the C1.99 and C1-25 which were high. So she diagnosed me with endometriosis straight away (I do have a sister with endo) and asked me if I wanted to try chinese traditional medicine. I said yes and had to take the tradicional medicine pills for 3months.

    So no surgery at all, and for my readings so far, a lot of woman still have pain after surgeries and they are not a cure. In fact, there isn't a cure, but a life changing approach. You can accept surgery and take the chance and see if it works for you, or you can try natural approaches and see if they help. If you remove your ovaries this will affect your hormones even more because the ovaries produce them. Some people say they reduced thei'r cysts with castor oil packs, or using serraptese enzymes, etc. Last time I went to the gynachologist in China, I didn't have a lot of cysts but just one, the bigger one, and all I have done was changing my diet and taking the chinese medicine for only a month, and taking some supplements. I am trying the serraptese right now and after a while I will have to do a ultrasound to see how the cyst is, it'll be my first appointment here in UK and I am afraid that western doctors are bias when it comes to traditional approaches.

    This is just my own story, but it my help you. In my case I don't even want any surgery on my ovaries because I don't have any children yet.

  • Bernie

    You are a smart lady to figure that out .

    Jumping into a surgery to remove your ovaries is pretty drastic as they really have not even looked with a scope

    I think I would get away from the dr and find another

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