Embedded endometriosis

[emr1989]

I had an operation in 2014 to remove the endometriosis which went as well as it could, I was then also given a mirena coil and an implant in my arm to stop my periods and hopefully stop the endometriosis returning. In the last year I've been experiencing cramps and other issues but there's been no bleeding. A gynaecologist has told me recently that it may not have been possible to remove all endometriosis and that it can become embedded in the abdomen. Was just wanting to know if anyone else had any experience with this and if and what treatment they had? Thank you.

[Starry]

I had cramps that stopped after removal of the mirena so that is one possibility.

It may be worth getting a bsge endo centre consultant opinion. A good bsge accredited specialist endo surgeon would only very rarely leave a remnant, if it risked a vital organ like bowel or bladder, though regrowth is possible as some endo types are hormone resistant.

[emr1989 in reply to Starry]

Well I have wondered if the cramps are down to the mirena coil as yesterday it was confirmed that I have two (whilst I was having the operation I already had a mirena coil fitted, they were meant to do a replacement of the coils but it seems they put the new one in without taking the old one out!) I've been told the only way to find out if the endo is back is by having the injections that put you thru the menopause, if my symptoms ease or disappear then its the endo, however I've just been diagnosed with very early stages of osteoporosis and have heard that a risk factor of the injections is osteoporosis. I don't know if they'd be able to see the embedded endo by having a laparascopy?

[Starry in reply to emr1989]

Crikey, two coils might well be the issue then. You should make a complaint as they can cause damage if not in place.

I would be very cautious about the chemical menopause. Some Endo types, especially in more advanced or severe cases are proven to be hormone resistant and able to generate their own estrogen so it can still be endo if your symptoms continue with the zoladex injections. Your gynae if an endo specialist should know that.

Wherever there are oestrogen receptors, aromatase and cholesterol there is potential to biosynthesise oestrogen. This occurs in tissues such as bones and adipose fat. It is known that endometriosis cells have the ability and that oestrogen is produced in situ within the cells and passed straight to the receptors thereby avoiding dilution into the circulation. Normal endometrium of healthy women doesn't express aromatase but the endometrium of women with endo does.

ncbi.nlm.nih.gov/pubmed/109...

researchgate.net/publicatio...

My symptoms actually worsened on the treatment as my body responded really badly to the drug though that's rare.

Your absolutely right about the contra indication for osteoporosis and bone risk, though it is possible to mitigate that risk to a degree with tibilone, which isn't, according to the medical studies, endo stimulating.

It's your body and your decision. Personally I had two cycles, it was disastrous and I would never touch zoladex again, but other ladies have had good results.

[Hansen82]

The coil needs removing after 4 years to be effective for endo treatment. You can have them in for 5 but the hormones that help endo stop after 4! So I would ask gynaecologist to remove both and fit another one.

It may be that medicine has improved since 2014, so worth checking gynaecologist! I know that when I was diagnosed in 2009 my gynaecologist at time said they couldn’t remove the endo as it was connected to uretha, however in 2014 with a new gynaecologist who specialises in endo, they did remove it!

Good luck

[Fabbird]

Hi, I have found symptoms return anytime after 3 years on each Mirena. I left it 4 years with my first one because I was told it lasts 5 years. However I started to get pain again at about 3.5 years. Within a month of it being replaced I felt better. After that, I had them changed every 3 years.

I read an article which said that although it’s slow release, the progesterone dose gradually decreases over time. The point where it dips under the threshold needed to control symptoms presumably varies a bit from woman to woman.

Having two at once can’t help either! I hope you get that sorted soon.

[Sfarre]

I have endo and had the Mirena coil fitted, and I absolutely hated the experience. It made monthly cycles ten times worse for me, including fainting in public and being taken to hospital in an ambulance! I asked them to remove it after seven months and immediately felt some relief. I then went on Cerazette and had no periods and mainly unsymptomatic for years. Of course, everyone is different, but that's what most helped me in the past.