Follow up appointment

Bit of background - started with pain when I stopped taking the pill because I wanted to get pregnant. Found to have a 10cm cyst on my left ovary, zoladex then a lap and removal of cyst in january. Results came back as endo and borderline tumour. Had a CT scan in the march which showed another cyst on the left ovary. In the may i had removal of my left ovary and omentum. Results came back as "just" endo this time. Was told my left ovary was stuck to the wall of my pelvis.

After I got the results of the last op, I overhauled my diet to follow the "endo" diet. And I've felt so well since then, for the last 3 months or so. I've had the odd pains but very manageable.

I have my follow up appt on tues and I went for a scan yesterday. The radiographer told me, and showed me, that what looked like left ovary and endo could be seen. You could see the right ovary and then the "left" ovary looked about 2 or 3 times the size. I'm guessing that endo has grown or attached itself to the ovary tissue that remained from the surgery.

So now I'm wondering what the consultant will say on tuesday. Will he want to start me on any kind of hormonal treatment? I don't really want any kind of treatment at the moment as I feel so well which is basically what I'll probably say. But then will that cause problems further down the line? I know I'm just speculating at the moment, it's just so difficult to know what to expect with this condition.

Thanks for reading my musings!

3 Replies

  • My initial thought is that, if you're having periods and have signs of endo being present, that endo is likely to be worsening and spreading. On the one hand, if you feel good and it's not affecting your life, then it makes sense to avoid treatment. However, if it's clear that one ovary is already affected and you want to try for children, I would personally do anything possible to preserve my fertility. Chances are, whatever is going on with that left ovary could get worse, and I know that losing an ovary is the last thing you'd want.

    If it were me, I'd be asking for another course of zoladex or taking the pill back to back to prevent further bleeding, scarring and spreading as much as possible.

    Are you in a position to try for a baby now? If so, maybe a 6 month course of treatment to shrink everything down and then try as soon as you're periods restart.

    Surgery is often recommended before trying to conceive as it gives you a better chance if you have severe endo. However, surgery can often be a double edged sword and cause more scar tissue etc. if you want to go down the surgery route, make sure you're being seen by an endo specialist with an interest in fertility - I don't know where you are but I'd recommend Tim Child in Oxford.

    I dont mean to worry you and it's possible that a diet could limit the impact of the disease but I'm not sure that it will and I'd want something that's more tested and proven where risks to fertility are concerned.

    I really hope that helps :)

  • Thanks for taking the time to read and comment, and give me a reality check! It's good to hear someone elses perspective. I haven't really had a chance to talk to anyone about it yet as life as got a bit stressful recently.

    We've been trying for a baby in between treatments for the last 2 years. I was thinking also that I will probably have to go down some kind of treatment route again, but after 2 surgerys already this year I really don't want anymore. Probably some kind of hormonal treatment will be for the best at the moment as although I've always been loathed to before and just want to get on having a baby, it's not been at the forefront of our minds recently as both our fathers (mine and hubbies) have been unwell.

    Will see what tuesday brings

  • Please keep positive.

    I have endo since I was a teen .. I have three kids despite five ops .

    I have also refused hormonal treatment for years after a few years in it but no improvement of my endo despite serious side effects ...

    I have nerve ablation when they remove nerve endings but it made me worse, two ops for nothing once when they did not check for infection and spread it ... Another one when my bowel was so big they could have perforated it... I have now a cyst on the right ovary just found out .. I am in lots of pain... While waiting for my last op, it was cancelled twice the first one then the second was cancelled but by the time I had it I had such a big nodule I don't know how I carried on...

    Nobody can advise you , you know your body but you are not alone .

    I personally hope they will remove my cyst but I know I would have to fight to be heard !!

    Don't lose your hope ! Xx

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