Shocked by endo diagnosis

Hi all,

I'm new here and feeling a bit confused and overwhelmed. Hoping for some reassuring thoughts from this lovely community on my situation.

I'm 41, have 2 children (8 & 4) and am not planning to have any more.

Three days ago I had a laparoscopy for cysts on my ovaries. The cysts turned out to be one simple and one luteum, so pretty harmless. Both were removed. But the surprise was that the surgeon found and removed endo on my ovaries and cervix. He also found it on my bowel, which he said he couldn't remove during the lap and we'd have to discuss how to approach it, whether with my surgery or drugs.

It's a shock because I haven't really had endo symptoms. My periods have been getting heavier for the past two years but not more painful. Then the past twelve months, my cycle has been all over the place, sometimes 18 days, sometimes 60 days in between periods.

Other symptoms I've had are anxiety, depression, constipation, weight loss, feeling full quickly. I had a day or two last month of feeling dizzy and faint. And my last period (first one in two months) was very painful and I was in bed for three days. But as I said, that is unusual and I just thought it was the cysts causing problems. My hormone levels are all fine, so I'm not perimenopausal.

So I guess I'm wondering what the treatment options would be. If I'm not in pain, is it necessary to have more surgery? Or is a hysterectomy just the way to go, to stop it in its tracks, given I've finished having kids? Is there any evidence for natural (diet?) remedies?

Obviously, I'm clueless. Would appreciate any insight!

Thanks and much love to everyone here suffering from this disease.

5 Replies

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  • Hello! Maybe talk through with your doctor if you can use contraception for control? I know that I use the Depo injection to stop my periods as they were unbearable and every other week, extremely heavy. Diets & alternative therapies can help! i would look into other control options rather than op for surgeries if you are coping pain wise!

    wish you luck!

  • Really sorry to hear your diagnosis. It is a shock and you will probably find you need some time to grieve. You say you didn't have endo symptoms, but from what you've said, you did, lots of them.

    They should be able to give you hormone treatments in the short term to help with pain relief - you'll probably be offered injections to put you into a temporary menopause (usually a course of 6 months though not a long term cure - the endo will return at some point after course ends). There are also various types of the pill, the mirena etc.

    If you have bowel endo you really need to be seen at a bsge centre if you aren't already (if you google it, there's a list). Bowel endo shouldn't really be dealt with by a normal gynae.

    Although hormone treatments slow the growth and can reduce pain, they aren't a cure and you may find further surgery unavoidable, especially if your disease is severe. You may also find (sorry) that your pain continues to worsen.

    A hysterectomy will help if you have adenomyosis (endo in the wall of the uterus) but just having your uterus removed will not put an end to endo pain, as the ovaries will continue to produce hormones and any remaining endo tissue will continue to respond to it. Having your ovaries removed can help but obviously brings it's own problems and isn't something to consider unless you're absolutely at the end of the road, disease wise.

    There does seem to be some evidence that diet can help but from women I've talked to, only those who have relatively mild endo have found it helpful. Everyone I know with severe disease has sadly found it doesn't make much difference. I was gluten free/dairy free for a year prior to diagnosis and it made no difference. I am however caffeine and alcohol free which does help so it can be worth experimenting but don't expect a miracle cure.

    good luck. x.

  • I'm new too! Welcome to the club X

  • I have severe endometriosis (stage 4), which I didn't find out about until we started trying unsuccessfully to have children. I had a laparoscopy and had some of it removed, and then two rounds of ivf, which very fortunately resulted in two daughters. I don't have a huge amount of pain and not going to have any more children (I'm 42), so I have had the mirena coil fitted and it's the best thing ever. After a few months, I no longer had periods and it only needs to be replaced every five years. Good luck. Xxx

  • Thank you everyone for your replies. Not liking the "no alcohol, no caffeine" advice very much!! I'm coeliac so I'm already gluten-free, and I cut out sugar a few years ago. Coffee and wine are all I have left! 😩

    I am reassured that my gynae is considered "the best endo guy in the country". But I'm equally terrified because a close friend has a stoma after endo surgery on her bowel went wrong. I know that's an extreme case but it plays on my mind. I will speak to him this week and get an idea of what to do next.

    Thanks again,

    S

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