hormonal coil recommended 4 endo. help / ... - Endometriosis UK

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hormonal coil recommended 4 endo. help / advise please <3

simran555 profile image
12 Replies

Hi im 21 and seeking advice. Endo has been confirmed, an MRI scan found thickness at the back of my uterus, ive been told to get the hormonal coil to help symptoms and period severity to manage.

alot of info online is about copper coil but i need advise on hormonal coil.

is it worth it? does it help? how bad are the side effects ?

alot of horror stories online are putting me off getting it but my periods are excruciating and i cannot go on with every day life and university with these intense periods so feel like i dont have an option.

im very worried about the potential side effects of hormonal acne but mainly weight gain. i have struggled with anorexia before and i am very worried weight gain from the coil will be so out of my control & encourage a relapse.

can anyone whose had the hormonal coil or has info on it please advise me id be so grateful.

12 Replies
Rosebluesnow profile image

Hi Simran! I was diagnosed at 21 with thickness and Adenomyosis and have just had my laproscopy at 23 now and have been confirmed w diagnosis of endometriosis and had this cut away. My consultant told me they can treat the endo with excision surgery which they have done now but the only cure for Adenomyosis is the Mirena coil. I had the copper coil when I was 20 and ended up in A&E twice as my body tried to push it out of my womb. I had super painful contractions constantly and cramps and then when I removed my tampon one day it yanked my coil half out of me - which I again ended up in A&E with the docs trying to fish it out of me! So I refused the coil personally. I know it works for some ladies but would be interested to see if there are any other solutions for ladies who don’t want this! Apologies for adding to the horror stories but I wish someone had told me what can happen before I got it put into my body. Best of luck for whatever you decide! Xx

simran555 profile image
simran555 in reply to Rosebluesnow

hi, thank you so much for your help and advise i really appreciate it.

i hope you're okay now that all sounds so terrible !!! its great you finally had the excision surgery.

my Dr told me im too young for any sort of surgery and that for now to go for the coil. im worried as this only masks my symptoms and doesn't really solve anything.

ive heard alot about womens bodies rejecting the coil its understandable because its literally a foreign object being put into your body !!!

im deffo taking my time in considering it because as im sure you are familiar with endo pain pushes you to your limits but your story is definitely something ill keep in mind so thank you so much xxx

BikeRiderGirl profile image

Hi! I'm going to share my experience. I have very similar to you in terms of endo plus adenomyosis. Had excision surgery for my endo and at the same time had a merina coil inserted. I've had no side affects that in aware of. My periods have stopped and as has much of the pain, though it did take a few months to properly kick in. I like it as it distributes the hormones directly to your reproductive systems, rather than taking the mini pill which has to travel through your blood system. Unfortunately (or fortunately!) every body is different so you may be like me or it may not work for you. Discuss it with you doctor and explain your concerns and hopefully they can explain what happens if it doesn't work. I was advised it can take six months to take affect.

With regards surgery, the only surgery for adeno is a hysterectomy so I can understand why he may not advise that right now. But if he also means you're too young for surgery on your endo, i would challenge them on that. The earlier the endo is excised the better from what I've read!

simran555 profile image
simran555 in reply to BikeRiderGirl

hi, thank you so much for your advise i really appreciate it.

that sounds awful for you im so glad you managed to get the surgery and the coil helped you thats great !!

tbh i dont know much about adenomyosis, my dr said he saw a thickness at the back of my uterus on an MRI which is likely endo, but he said its hard to be certain and that im too young for Laparoscopy. but basically to say that its likely mild endo and to get the coil.

im surprised he said its only mild because the pain is unbearable, each period gets worse and i honestly was expecting alot worse. but i guess endo is just so painful at all stages.

ive googled adenomyosis and it sounds similiar to what he was saying im not too sure tbh.

im worried about the thickness growing because every period seems to get even worse but he said the coil will slow any growth and to have a review with him a years time after getting it fitted and to talk about its progress / any other solution needed.

( hes a private dr but im going through the NHS for the coil - mixing private and NHS because NHS waiting times are horrendous but private drs are expensive i hope this makes sense haha )

thank you so much again xx

Minnie153 profile image

Hi Simran,Sorry to hear your experience. Personally I’d recommend the Mirena, I had it inserted following excision of significant endo and it worked a treat. I barely bled, the pain was sorted and this lasted for almost ten year (my gynae recommended changing coil 2 yearly). I started to bleed continuously most likely due to perimenopause, a fibroid and adenomyosis when ai was listed for hysterectomy which I had in January after sn almost 2 year wait. But it got me to 47 before I needed this.

Everybody is different but I feel you should give it a go, I often had mild cramps and spotting for a months after the insertion but then hardly any bleeding.

Good luck 🍀😊

simran555 profile image
simran555 in reply to Minnie153

hi thank you so much for your advise, i really appreciate it.

your experience sounds so hard to deal with im so glad you finally got a solution :)

im deffo considering the coil but am just worried its a cover up kinda mask the symptoms then deal with it again later fix

thanks so much again xx

Minnie153 profile image
Minnie153 in reply to simran555

Hiya, I wouldn’t consider it a cover up. It works by preventing further lesions developing and to stop any that you do have from processing further. It stops bleeding, which stops pain and further disease. My coil worked well for me following extensive resection surgery ahd allowed me a long time pain free. I’ve had endo for almost 35 years and my hysterectomy isn’t a guarantee there won’t be any further profession of my disease because I’m on HRT, which is my choice due to the symptoms of menopause causing me joint pain, insomnia, low mood, night sweats, brain fog and Genito-urinary symptoms. If I was you I’d try it as the waiting list for surgery is huge and you’re unlikely to get treatment quickly. This will give you time to study, and manage your pain until you receive a date for scheduled surgery. Of course everybody responds differently but if you don’t try you don’t know. I wish you well and good luck xx

simran555 profile image
simran555 in reply to Minnie153

okay that makes alot of sense!! new to all of this so still learning everything thank you so much for your advise its helped me out alot !!!

perhaps summer holidays will be a good time to get the coil and finish off uni after with alot less pain.

dealing with endo for 35 years is tough you are so strong xxx

BookBimbles profile image

No scans can rule out endometriosis. So whilst you have adenomyosis, I would question and think about a expert laparoscopy +\- excision for endometriosis, as it’s the only way to rule that out. Check the relevant NICE guidelines.

You are not too young for excision surgery on endometriosis. And that may also help with symptoms. I had very painful periods, PMS etc from age 12… it’s taken to age 40 to have endometriosis diagnosed and excised. It only got worse with time and if there’s endo the coil, hormones etc will only mask symptoms. So of course could help whilst waiting for surgery.

I had the Mirena coil inserted during my laparoscopy, but ended up very emotional, in lots of pain and bleeding, plus developed a painful ovarian cyst. On top of recovering from surgery, it was too much and I’ve had it removed. But I only tried it because the unit I was under assured me they would remove it, if I wanted it out. It took about a week for them to fit me in for a scan and removal. I had also gone to my GP, but they couldn’t find the threads, and needed to refer me for a scan, which would have had me waiting 3-4 weeks more.

Best of luck and if you do try the coil maybe just time it so you have 6 weeks with no exams / deadlines etc - or talk to relevant support / tutor at your uni about your health difficulties and the potential issues you will have for the medical treatment. The coil is a medical treatment after all. I think Endometriosis UK has advice on talking to employers that may be relevant.

simran555 profile image
simran555 in reply to BookBimbles

hi thank you so much for your advise i really appreciate it!!

your experience sounds so tough especially from the age of 12 !!!

i went to a private specialist because of ridiculous NHS waiting times and he said the MRI picked up the thickness, however said he cannot be certain until a laparoscopy but that im too young for that and to just go with saying i have mild endo and to get the hormonal coil.

i think this is seeming like a waiting game of having the coil fitted until im older and then dealing with whatever then which im not a fan of.

worried ill have a similar experience to yours and many others of the coil not doing great and after years of pain getting the relevant surgery.

ive spoken to my uni, thank you so much for the suggestion, theyre supporting me with extra exam time ect which is nice.

thank you so much again xx

Rosebluesnow profile image

Hi Simran, just to add I would ask for a second opinion from another consultant with regards to the too young comments - I was referred for my laparoscopy at 21 and due to waiting times didn’t have it until 23 but there shouldn’t be an age limit on this operation as left untreated it can become worse so surely it’s better to catch early I’d say xx

simran555 profile image
simran555 in reply to Rosebluesnow

thank you so much yes of course this makes so much sense !!

i did express worry about it getting worse with time to my Dr and he said the coil would slow that but im deffo going to seek a second opinion

thanks again xx

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