POP to prevent recurrence of endo

Hi

I was diagnosed with endo 3 and a half years ago. I had a laparoscopy then and they removed/drained cysts and removed adhesions, as well as separating organs that were stuck together. I was given no follow up advice at that time (slightly complicated story that I won't bore you with) and of course the endo built up again over time. I had really bad pain and eventually a lovely GP referred me to the hospital again.

I had my second laparoscopy on Monday. I think they removed a cyst and adhesions - the consultant did come and tell me but I was still in the recovery room and could barely keep my eyes open so can't really remember. (I've booked to see my gp to see what she can see on the notes on the system).

Anyway, to my question! Before I went for the op the consultant had suggested I get a Mirena coil fitted during surgery. I read up on it and read forums and decided against it. I told her this before my op on Monday and she guaranteed me the endo will return if I don't take hormones. I understand the theory behind this of course but I'm not keen on taking hormones.

When being discharged the nurse gave me meds which turned out to be prog only pills. I guess that was in place of a coil. Having read up on these I am still very reluctant to take them. I can cope with endo pain as I've had to for years (it's the fatigue that kills me), but am not keen on the side effects of the pills. I'll speak to my gp about it next week, but I wondered if anyone else has chosen not to take anything after surgery? Or if you have, how has it been?

All advice welcomed :-)

Thank you!

11 Replies

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  • Hi, I hope you are recovering well,

    Was you seen in a bsge centre, ??

    I'm on zolodez injection, and to be honest I wasn't keen on taking them, but my consultant wanted me to take them before my next laparoscopy, these are only short term,

    Good luck

  • Hi

    It was just an NHS hospital gynae consultant. I'm going to ask my GP about it next week though.

    I'm doing OK. Just tired and my wounds are a bit sore, but getting there!

    Thanks :-)

  • I tried POP after my first lap but it didn't agree with me. My endo came back so I'm having a second lap and a Mirena. I'm anxious about Mirena and side effects but willing to give it a go on the basis that it can be removed if it doesn't agree with me. X

  • I hope that works out better for you :-) When you say the pills didn't agree with you, was it the side effects they list on the advice sheet?

    My reason for saying no to the coil (apart from side effects) was that I reckoned it would be easier to stop taking tablets than to have to get a coil removed if it didn't agree with me. I had assumed they basically did the same thing, but am I wrong there?

  • Mirena is a lower dose of progesterone so I'm hoping I'll experience fewer side effects. If it gives me the same trouble as the POP I'll need to have it removed but I'm prepared to be patient to allow it time to settle in. I need to find something that works because my endo came back so quickly after my first lap :( X

  • I had constant spotting bleeding and some mood changes (was very irritable!) I hope Mirena will be better X

  • That doesn't sound great :-( The lower dose might definitely be better - fingers crossed!

    My endo came back pretty quickly too after the first lap, it just took the doctors a long time before they relented and referred me to the hospital. It frustrates me that few doctors seem to listen or care. They act like 'you have endometriosis, you're going to have pain, get over it.' It is also a great blaming tool. I have other pain (which I am pretty sure is my gallbladder) but as soon as they hear I have endo they dismiss it and say it must be that.

    Sorry, off topic slightly. Rant over!!

  • I've been really lucky with my care, I'm treated at a specialist centre and have a specialist nurse who has been a great support. Maybe you could be referred to a different hospital if you're not happy with your treatment? X

  • There's a specialist centre not too far away so I will ask. TBH, once my current GP got on the case things were dealt with really quickly so I shouldn't really complain.

  • Not keen on prostap, but have taken visanne ( a progesterone only pill) not too bad, that or a mini-pill. I used to take yasmin which was amazing, but migraines made me come off it.

  • Thank you :-)

    The one the hospital gave me is feanolla (desogestrel).

    I get migraines which is one reason I am hesitant about taking these. Seeing my GP on Wed.

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