Advice?

[Ps-endo]

hi!

I had my lap 2 weeks ago which confirmed endo, I also have adenomyosis.

I have an appointment in a few weeks with an endo nurse to go through my notes, findings, moving forward etc. I want to be prepared as I’ve felt so confused, angry, anxious since my diagnosis so I was just wondering the kind of questions I should ask during my appointment if anyone can help please?

thank you!

[Jh987]

Hi p5imm0Presumably the lap was just to identify whether you had endo, and adenomyosis? They didn't actually laer out any of the tissues?

I assume the options will be laser the endo, go on the pill so either your periods are lighter/stop, and finally full hysterectomy.

The questions you might want to ask are:

How much endo therefore how much laser scar tissue? This may impact on fertility. I don't think they can do anything about the adenomyosis, so assume that will be painful even if the endo is dealt with.

Percentage of women who have laser treatment in your circumstances who end up pain free after one session?

Is there adenomyosis all around the abdominal wall, or have they found it in the organs too? May impact on your decision.

Number of surgeries that result in nerve pain afterwards (ACNES).

Number of laparoscopies the surgeon has done. Number of laps with damage to organs. Obs they may not tell you this!

Presumably there may be an option to have your ovaries removed and your eggs frozen, but I have only had them removed, no freezing, and I'm well past childbearing age now. Having them removed will send you straight into surgical menopause, which is not pleasant, although they may be able to give you hrt and something that stops your periods, but that's a lot of chemicals.

Sorry I have no positive news on this, to add to the devastation you are already feeling. One suggestion may be to look at alternative therapies such as homeopathy, Chinese medicine etc. These are broadly rubbished by the medical profession, but in my view, if it works, I don't care how it works! I had some success with homeopathy, although not for endometriosis unfortunately.

Good luck with your next consultation.

Jac

[Ps-endo in reply to Jh987]

Hi,

Thanks so much for your reply and advice. I should have specified that they excised as much of the endo as they could during the laparoscopy. But that was really useful and I’ll definitely be asking those questions! It is all so confusing whilst coming to terms with a diagnosis.

Thanks again x

[Jh987 in reply to Ps-endo]

You're welcome. Hope it's given you some things to think about. Don't despair x