advice for 17 y/o - should we get mirena removed after 9 months?

[Redmum2]

my 17 year old daughter has suffered since 14.; Endo confirmed with a lap 18 months ago. Immediately after lap ( and removal of endo) was back to herself started apprenticeship. Jan - pain and bleeding returned mirena fitted - have tried desogesterol and provera - has bled for over a year & in constant pain. Off sick now for over 6 months. Apprenticeship at risk due to sickness. Pelvic Pain clinic advising to remove coil; we were advised to persevere for 12 months. What should we do?

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi Redmum2 thanks for reaching out, I am so sorry that you daughter is having such a difficult and painful time and at such a young age. I have had lots of treatments over the years, including having the coil fitted approx. 6 years ago (I am now 46), I personally had to have it removed within 2 weeks due to the extreme pain, the relief was immediate but it still took some time to settle (pain wise). If you follow this link you will see the range of support that you can get from us, endometriosis-uk.org/get-su..., this includes our Helpline and webchat and information regarding support groups (perhaps an option in the future for you both), it may help to speak one on one to a real person sooner rather than later. Good luck to you both.

[Redmum2 in reply to TogetherWeAreStrong]

thanks so much, I plan to call support line tomorrow - have been helpful before. I struggle to trust pelvic pain advice as they said she didn’t have endo and didn’t need lap- went private and lap confirmed endo- so frustrating as don’t want to trial what works anymore want to go with something that will definitely improve her pain - but I know not that straight forward!

[Ess1982 in reply to Redmum2]

it’s a personal choice but I would remove it. I had mine removed, I think if it hasn’t settled after 9 months it’s not going to. Your daughter is young, hopefully they can expedite her and get her on hormonal treatment. They tend to treat you better when you are young that’s been my experience. Wishing you and your daughter all the best. Xx

[Redmum2 in reply to Ess1982]

thank you, just not sure what the other options are tried provera and deogeterone, doesn’t want menopause option. Can’t take POP as have blood clot disorder

[Ess1982 in reply to TogetherWeAreStrong]

do you mind my asking how long it took for your pain to settle after the Mirena? Mines been three weeks and I’m in agony. Knowing this will settle will give me hope xx

[TogetherWeAreStrong Moderator Endometriosis UK in reply to Ess1982]

Hi Ess1982 , apologies for the delayed reply to your question. It was a few years ago now, so I would not be confident on giving an exact answer, however, I do recall being in a great deal of pain for a good few days and had further discomfort, but I managed to do daily activities (light). 3 weeks of agony is an awful long time, how are you feeling now as it's been a further week? I will make sure to check for your reply.

[Ess1982 in reply to TogetherWeAreStrong]

still in agony.. in fact it’s worse I now have a suspected urine infection. Back on antibiotics… codeine and paracetamol aren’t touching the pain. I don’t know what to do anymore. 🥲

[TogetherWeAreStrong Moderator Endometriosis UK in reply to Ess1982]

elht.nhs.uk/patients/your-e...

NHS post surgery acute pain team (post surgery) pain scale

[TogetherWeAreStrong Moderator Endometriosis UK in reply to TogetherWeAreStrong]

Ess1982 this is an NHS pain scale (source in link). Please consider how you are feeling. A very viable option this evening is to speak with or interact on-line with a 111 operator

nhs.uk/nhs-services/urgent-...

[Helena45]

I'm sorry that your daughter is experiencing prolonged pain.

The guidance from the drug company who produce the Mirena coil do state that it is not recommended for women who have not had children and can take 6 months to settle in. It also is not effective for endometrial deposits outside of the uterus as it acts locally inside the womb so can be very good for interuterine fibroids but not for peritoneal deposits and deep infiltrating endo. Many women have to have it removed as it can cause increased cramping and bleeding.

Have you considered a progesterone implant if the oral pills have not worked well.

I always declined the Mirena although the majority of GPs do suggest this to try and stop the menstrual cycle. The research does indicate that in approx 50% of women they continue to bleed and it can be very irregular.

I hope you manage to find something that works well for you.

[Redmum2 in reply to Helena45]

thank you so much. Her lap showed endo back of uterus , behind each ovary,and peritoneum. My daughter has factor v Leiden which I believe means we she can’t have progesterone? She spent her GCSE year mainly in bed yet despite this got on a nurse apprenticeship and has done incredibly well. Due to sickness after pain returning we are being told apprenticeship can’t continue, I am getting conflicting advice and just want to support her to make the best decisions. Do you mind me asking do you have a medical/ health background? Thank you so much for responding x

[Helena45]

Hi, yes I'm an Advanced Physio Practitioner but also have endometriosis - widespread pelvic with an ovarian endometrioma and adhesions/deposits on the ureter, bowel, uterine sacral ligaments. Started age 13 and settling now that I'm menopausal at the age of 52 but it's been a very up and down journey with some surgery and trials of hormone treatments.

I can strongly recommend looking at drmortons.co.uk - a website created by Dr Karen Morton, comprised of eminent private gynae/obstetric consultants and GPs from the UK and although it is a private service you should be able to gain some more information about endometriosis management and new treatments coming through. I understand your concern re the Factor V Leiden although you may find the caution is with the oestrogen treatments only - the consultants on the website should be able to advise you more clearly on this. The NHS provider trust that I work with use this resource to educate staff on all womens's health related issues.

Hopefully your daughter will be able to pick up her apprenticeship later.

Best wishes.

[Redmum2 in reply to Helena45]

thanks so much