Endo stage 4 - daughter only 20

I read alot of the posts on here and didnt even realise how bad stage 4 endo can be. Surprisingly my daughter has only just been diagnosed with it at the age of 20. She has had pain but not excruciatingly so. She also has type 1 diabetes and just gets on with life...she is training to be a solicitor.

However the news that she has 3 large chocolate cysts on both ovaries with the risk that she may have to go into surgical menopause has floored me (and her but she pushes the worry away I think).

She has a date for an operation in August on NHS but with that op, they think it involve invasive surgery and she may have an oopherectomy!

I investigated this as she has so much to deal with in life anyway and came up with Mr Trehan and his successes. We had a private appointment with him in Harley Street and the date has now come up for surgery with him next week in Yorkshire. We do not have private health cover but will pay the £10k plus to get this done.

I only hope Im making the right decision for her. Obviously there is no guarantee with his procedure but I'll be darned if I let her future happiness be threatened if I can possibly help it. She has to go back for her last year at uni in September and the worry that she may have other problems to deal with on top is too much for me.

5 Replies

  • Hi Number1,

    It must be very hard to deal with this but for what it's worth I think you have done the right thing by getting another opinion and steering away from oopherectomy. Such a procedure should not be necessary in her case. I understand how worrying it is and even though you might feel powerless what you are doing by seeking out a good surgeon is more than any daughter could wish for.

    Best Wishes to you and your daughter.

  • I have heard that Mr Tehran is amazing. My consultant is Chris Mann who practices in Birmingham also has a national reputation. Both are very keen to preserve young womens fertility and to prevent surgical menopause in you women. i am having a ovarian cystectomy on Saturday. I have a chcolate cyst on one ovary which is 5x5 and a cystedenoma cyst/ benign tumour ( please god let it be benign) on the the other. Mr Mann seems confident and he know that if everything is benign that my priority is my fertility and not going into menopause. He is the preseideny of she endometriosis.org. Uk and is an advocate for women getting better treatment for this disease. My advice is if you can pay and be proactive in who you chose then do it. So far it's costing me nearly 4k and as far as I am concerned its money well spend. I wish your daughter lots of luck.

  • I am sorry to hear that your daughter has this diagnosis right in the middle of uni. An oopherectomy is completely unnecessary for your daughter, I have had repeated haemorrhagic cysts on my ovaries and they are still intact so worry not. Remember you are entitled to a second opinion on the NHS.

    There is no reason why your daughter can't complete uni and be a solicitor, she already manages a pretty severe disease so I think she will be ok, a lot of coping with endo is your mentality and it sounds like she has that bit down!

    The chemical menopause stops endometriosis from growing so it may keep it at bay while she finishes school but it is worth exploring all of her options, do some research and go for what's best. Most of the time its trial and error, I have found that the mirena coil is a godsend but again its not for everyone.

    Going private without cover is expensive it may be worth finding a policy that will cover pre-existing conditions to help you manage the cost.

    I wish you and your daughter the best of luck, feel free to message me if you need any help xxx

  • Hi. thank you for your reply. We have already had the second opinion on the NHS and their opinion is that they may not be able to save her ovaries hence why I took further action and found Mr Trehan. Because of her diabetes, she may not be able to have children or would have difficulty doing so. I did not want to ruin her chances of a career if that is the case and to go through menopause as well as final exams might not be a good option.

    I hope Im making the right decision. The operation is tomorrow so wish us luck.

  • How did everything go? x

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