Advice on next steps

[hltz]

Will try and keep this short. I had a laparoscopy in May. Found endo I’m ovaries, bladder, bowels. They couldn’t remove it all and needed someone with more expertise to do the more intricate areas.

I was referred to a specialist who I assumed would book me in for another op to remove the rest. He said that he doesn’t have to do that and you can live with endo in you. However I was confused by this as having endo obviously affects your quality of life. He said I could have another op if I want, however saying it like that made me feel as though I’m asking for something that I don’t need.

He then recommended further treatment of injections to stop my ovaries working.

My two questions are

1. Would you ask for the second lap to remove the last of the endo?

2. Does anyone have any experience of these injections? Do they have side effects and do they stop more endo?

Many thanks ladies, I desperately need some advice from people who are going through this.

[sarahsarah123]

Hey, sorry to hear you are suffering. Very annoying that the doctor made out like you don't need surgery! Obviously surgery has risks especially with bowel involvement, but if it is affecting your daily life then surgery is your best option in my opinion. GnRH-a drugs (the injection) will put you into temporary menopause, which in theory should reduce your oestrogen levels and so prevent flare-ups of your endo and reduce pain. However, there is no evidence that it actually shrinks the endo implants themselves, and they may even continue growing so as soon as you come off the injection (and you should only be on it for 6 months due to the effects it has on bone density, among other things) the pain comes straight back, sometimes worse than before. Plus, there are a whole host of horrible possible side effects (google Lupron victims to see the extreme side) which may or may not affect you, so it's not worth it if you have any other options- and you do, surgery. Excision surgery of bowel endo by an expert (at a BSGE centre if you are in the UK) *should* give you fairly long term relief, so I would try and get referred to one of them if I were you! Good luck x

[hltz in reply to sarahsarah123]

Thank you so much. This has been invaluable to me, feel a bit lost with it all. xx

[sarahsarah123 in reply to hltz]

No worries, hope you get some relief! Something else I just thought to mention is, there is pretty solid evidence that taking birth control (combined or progesterone only) back to back for a year or more brings pain relief equivalent to the use of GnRH-a drugs but with fewer scary side effects, so if you do want to avoid surgery and can live with the pain on birth control might be something to consider! X

[wanwood]

I had a similar decision to make and ultimately it's one of those things where there isn't always a clear right or wrong answer. Things to take into consideration:

- Is the current level of pain and discomfort manageable?

- How far away from menopause are you? Lupron / Prostap / Zoladex is not a long term solution, although hormonal contraceptives could be

- How do you feel about the risk of complications and are you aware of what they could be? Personally I am willing to have surgery on my bladder but not my bowel because I just don't want to take the risk however minuscule it is

- Is fertility a consideration, and if so, ask some questions about whether surgery will help this

- Recto-vaginal endo usually doesn't grow back after excision. There would be more likelihood of it growing back on the ovaries

- There are studies showing that people who have surgery on balance do get some relief from it, but I think a surgeon is obliged to point out to you that if something isn't literally life threatening eg cancer, you can live with it ("the conservative approach")

- How long would you have to wait for the surgery?

It's a difficult one. Try to put together some questions for your surgeon to go back with to ask, and get as much input from your surgeon, an endo nurse, whoever will talk to you as you possibly can. Best wishes xx

[hltz in reply to wanwood]

Thanks for your advice and those questions are a great start. I wish there were clearer options - without all of them involving some sort of negative! Stuck between a rock and a hard place. Thanks for taking the time to respond. xx

[Hessyh]

Hi I too got referred to specialist because had endo on my ovaries, bowl and bladder and first surgeon couldn’t do the op. I seen the specialist who booked me in for surgery but I waited 9 month and was glad to have it thinking it would take away my pain. I had op and was told they couldn’t remove endo on my bowl or bladder as it risked damaging them, 3 months after pain was back so feel I went through surgery for nothing. May be worth having injection rather then surgery as it did nothing to help me, but we are all different, it may help you as it has for others. I want a baby so I don’t get injection x