Please help me :(

Hi

I had surgery last year to see if I had endometriosis as I had been getting pain for more than a year.

After my surgery they confirmed I had endometriosis and it was more on my left side, and it had attached to my left ovary. I had a bit on the right and some at the front as well.

I thought I was hurting well as the pain started to get better but about 3 months after I started spot bleeding, so I went back to my consultant which he just changed to pull I was taking and said that should make it better.

The new pill has not made it better but made it worse as I have to take painkillers all the time, but I try to just live with it so I don't have to keep taking pills.

I have just seen a different consultant as I had to go NHS, my new consultant has said about getting the mirena coil fitting, which I have an appointment Monday to get it done. But I feel like I should be pushing the consultant more to see why my pain has got worse after having the surgery and not better like they said it would :(

Please help :(

I'm 22 and I haven't had kids yet and I would really like to, and I feel if I leave it I could be making things worse for myself!

7 Replies

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  • Hi hun,

    definitely push for them to look in to it more. They are vrry quick to use pill/coil to mask problems. Tell them your concerns and that you want it looked in to. Good luck x

  • Thanks 😊

  • I think the medics believe that if the hormone therapy isn't controlling it, then changing it might start to stop it worsening. The Mirena, as far as I understand it is one of the recommended hormone treatments because it delivers progesterone only. Not sure what pill you were on or what pill you were changed to.

    I think that if there is still underlying endometriosis, this should be excised before the hormone therapy will help much (if it will help). Surely they should be looking to get rid of as much of/all of the endo before suppressing further growth?! If you are already experiencing chronic pain and this is likely to be caused by further endometriosis, then the Mirena would probably work better for you if they can remove what's causing the pain.

  • Thank you. I have booked another appointment to see my consultant before I got the coil fitted.

    As I had the surgery a year ago he didn't seem to think it would grow back that finished. So I have just been going on what he has said but I will be pushing for him to find out why I have been getting so much pain :)

  • As far as I can understand, if the deposits are miniscule then they might not be visible at the time of surgery, and therefore grow afterwards (especially if hormone therapy is not working or not progesterone-only). So he might have gotten all the visible stuff and missed bits that were not clear at the time of surgery.

    Another factor is whether you had laser or excision. Lasered deposits seem to grow back because they are not 'dug out' like excision and just layers ate burnt back. I guess if the later isn't burnt back far enough then some remains to eventually grow again.

    Is your consultant an endo specialist or a general gynae surgeon?

  • I had laser to remove the endo. That's very helpful to know thank you :)

    I think he is just a general gynae, I will have to ask next time I see him.

  • Make sure you get an Endo specialist ..no 1 and surgery can me a e scarring which makes Endo worse so not always best approach. Yes get it checked but mirena works for lots people ( not me I'm on norethistetone ) and changes their lives. But don't even think about it if not an Endo specialist. ! Contact Endometriosis UK.

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