COIL, HORMONES... PLEASE HELP: Hi everyone... - Endometriosis UK

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COIL, HORMONES... PLEASE HELP

SandraRC profile image
13 Replies

Hi everyone,

I have been advised to take my copper coil out to put the hormonal coil in to manage symptoms that look like endometriosis. However, they haven't done laparoscopy so we aren't sure yet if I do have endo. It is confusing, frustrating and overwhelming, I am not a fan of the idea of putting hormones on my body.

Any advise on how both coils affect the symptoms and if not putting the hormonal coil can affect the illness? I just don't want to use hormonal treatments when I haven't got a clear diagnosis.

Thank you!

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SandraRC profile image
SandraRC
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13 Replies
Cammmie profile image
Cammmie

Ask to get a scan to confirm your case, they should be able to see the endometriosis cysts in an internal ultrasound scan. This would tell you whether you have it or not. Doctors tend to prescribe hormones as you could have something else and both are solved with hormones. It won't help you if you don't know what is wrong and could make your body worse off.

SandraRC profile image
SandraRC in reply to Cammmie

They already did but no cysts were found

RunningMum11 profile image
RunningMum11

Hey 👋🏻 I have the mirena coil and it helped massively with my endometriosis symptoms. Endometriosis can only be determined by having a laparoscopy so definitely request one. Then you may feel happier changing coils😌. Xx

Hessyh profile image
Hessyh in reply to RunningMum11

Hi, I have the mirena cool too but it hasn’t helped much, I recently had a 12cm endo cyst removed and thought the coil would stop my pain but within 6 months it’s back, devastated x

pinktiger33 profile image
pinktiger33

Firstly, definitely keep pushing for a laparoscopy! Whilst scans can sometimes help to identify endometriosis and other issues, they can not rule out endometriosis through these as it often does not show on scans. Many people (myself included) have several ‘clear’ scans to then be later diagnosed with endometriosis through laparoscopy.

With regards to the hormones, in my experience the hormonal coil has definitely helped my endo symptoms. I was wary of having it put in due to fear of how the hormones would affect my mood, however it was unfortunately for me, a case of weighing up which I could cope with more: experiencing awful endo symptoms, or easing these symptoms but experiencing an impact on my mood. At the moment, the coil is still helping to ease my symptoms and I have used the opportunity to have therapy to help me cope with the changes in my mood.

Something else to consider could be the progestogen only pill. I tried this before I was diagnosed and it helped me to confirm in my own mind that it was endometriosis because of how it really helped my symptoms but I did stop due to it having a huge negative impact on my mood. It will affect people differently though so may be worth a try as it’s less permanent and you can stop taking it at any time.

With regards to the copper coil, I found that my symptoms were really bad when I had this in. I’m not sure if they were worse because of having it in than they would be without anything, but it certainly didn’t help my symptoms at all.

I hope this has helped a little. Please feel free to ask any questions!

:)

SandraRC profile image
SandraRC in reply to pinktiger33

Thank you, really helpful. I have considered to take copper coil out and let my body rest... mirena or any other hormonal treatment is not something I am keen on to be honest.

I am going to ask to be referred to an endo specialist to see if he can push for a clear diagnosis. Fingers crossed.

Meriel_Owen profile image
Meriel_Owen

Hi. I would recommend that you push for a laparoscopy if you want a firm diagnosis. It is quite a thing to go through - don’t take having surgery lightly - but it’s also just a key hole procedure and you are in and out in a day.

I have the mirena after two laparoscopies as the pill didn’t seem to keep the endo at bay and it was also really negative for my moods. I think the mirena is slightly better on that front as the amount of progesterone is a fraction to that of the pill. I still do have to manage bouts of pain and bleeding but not as bad as before. But then my last lap was excision surgery which is more thorough in removal of endo, so I think that excision plus mirena is a good combination for success. They also fitted the mirena during my op so I didn’t even have to go through the discomfort of having it put in.

Hope all this helps a bit.

SandraRC profile image
SandraRC in reply to Meriel_Owen

Ok thanks, fingers crossed they go for a clear diagnosis.

SandraRC profile image
SandraRC

Thank you all ladies.

I understand by your messages that hormones is just always the way to go? No one that has avoided on the treatment of endo at all?

Noodle1984 profile image
Noodle1984 in reply to SandraRC

It’s the only way to keep Endo from growing. I just had stage 4 recto vagina Endo removed and in order to keep it from growing rapidly the only treatment is hormones. Don’t be afraid of them, know that there are lots of different options available. I personally can’t take the pill because I have thrombocytosis (blood clotting issue) so was taken off this and put on vissane, it didn’t work so I started lupron which has been a love hate relationship and I just got the coil in during my lap which hasn’t been too bad. But the issue with Endo is it feeds on estrogen, even a hysterectomy wouldn’t fully get rid of Endo because of this. Most specialist prefer to try and treat via medication prior to surgery as it can help to shrink it (meds like vissane). I tried everything and anything prior to surgery as I didn’t want to have it. Try looking into changing your diet...an anti inflammatory diet. The clinic I went to was a center of excellence so they do combined program first before even discussing surgery. This includes pelvic physio, group cognitive behavior therapy, one on one therapy, hormonal medication, exercise and diet.

elizabeth_1997 profile image
elizabeth_1997

I've had the mirena coil in now for around 2 years, I actually had it put in before I even knew I had endometriosis, so it was just a plus to know that I had picked the best contraceptive for women with endometriosis without even knowing. It has helped with my pain and I bleed little to non at all. The hormones are just local to your womb so it's not like hormones are being pumped everywhere, big love X

Jese profile image
Jese

Hi Sandra, I don't have any answers for you, just wanted to empathise! I have tried five different pills and the Mirena, and none have worked for me. And I just hate the idea of taking hormones forever, but they're really the only thing any of my doctors have suggested. I haven't found an answer yet, just doing my best to reduce the inflammation with what I eat at the moment. But you're not the only one who doesn't want to take hormones! x

Afrohair profile image
Afrohair

Can I just say with Mirena your periods stop but it Dosent stop your hormones you still go through ovulation and all those processes

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