Return after ovary removal?

[GeorgieBlu]

10 years ago I had my ovaries removed after suffering from endo for several years. My quality of life improved immensely and I’ve been pretty much pain free since. I am on Kliovance HRT (1mg) and had the mirena coil fitted which is now 5 yrs old. I effectively had a medical menopause. When I had surgery I was told he couldn’t get all the cells as various parts of my insides had got stuck together and was too risky, so I’ve always assumed I still have remnants of the endo.

3 days ago I had a very heavy and sudden bleed, it subsided but started again. Spoke to emergency doctor, been prescribed Norethisterone and appt at surgery on Monday. He thinks it’s my mirena that needs replacing but Im not convinced it’s just that as I was without one for a while and had no bleeding, it was fitted to protect my womb lining. Now getting pains just like I used to.

Has anyone had a similar experience? I don’t want to be back to square one, I thought the ovary removal had cured me.

[Lindle]

It sounds like you had severe endo 10 years ago but the treatment pathway to specialist centres was only just up and running at that time and few doctors knew about it. The NHS England specification was produced in 2013.

As you had known endo left in this can still progress even without ovaries. Oestrogen only HRT is also associated with recurrence and rarely even combined has been associated with recurrence. In any case endo produces its own oestrogen within its cells and can grow without ovaries or HRT.

The mirena only really addresses bleeding and not endo growth. Your first recommended step is to obtain a copy of your lap report from 10 years ago if it is available - generally hospitals only keep records for 8 years if there has been no follow up since the last treatment, but it's worth a try. GP records are kept a lot longer so it may have been recorded on there what stage/severity you had. You could really do with something in writing confirming how severe it was - maybe you have a letter somewhere.

Then an expert scan would be advised. The advanced sonographers and radiologists who are trained to look for deep endo are mostly in endo centres and you need to have some sort of evidence to get referred to one so if funds allow a private scan is often the best route to get into the NHS system where you need to be.

You might find the post below useful in identifying if you have symptoms of deep disease.

healthunlocked.com/endometr...

x

[GeorgieBlu in reply to Lindle]

Thank you Lindle for such an informative reply. At the moment I am in shock and also worried about what has caused this sudden bleeding. The endo pains have been the icing on the cake so to speak. I will start attempting to get my notes, thank you for that advice. Most of my care was private via my work healthcare insurance so if it exists is hopefully in one place, I may even have copies of some of it.

Everything seems so slow at the moment in terms of appointments and even trying to replace the mirena. I am hoping to know next steps on Monday after seeing the GP but will be pushing for a referral, don’t think this will be going away on its own.