Does the pill/coil halt progression?

[Sophhh]

Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: instagram.com/p/CzUKTp4tkwb...

But now I have been left feeling lost, my consultant recommended starting on the pill or having the hormonal coil. For two reasons I believe - symptom management and to slow the progression of new tissue. 1 week in to taking the lucette pill I have the worst cramping (I’m only on day 8 of my cycle) all across my pelvis and radiating down my legs. It is identical to the endometrial pain I feel when on my period. I feel heavy, depressed and deflated

I also cannot find any clinical evidence to show that the combined pill is effective in halting the progression / growth of endometrial tissue. Does anyone know if this is true or if the clinical evidence exists?

If not, I’m finding it really difficult to understand why I should persevere with these symptoms because I’ve traded in 1 week of bad period for a constant pain and symptoms I just want to stop taking it but I want to do the right thing.

[soph09]

Hi Sophie,

Much like you , I had a laparoscopy in September and finally got a confirmed diagnosis of endo! My consultant fitted a coil at the same time of my op as he said without a form of hormone management afterwards, it will grow back at a quicker rate than without it. He said if I didn't do something I could potentially end up back in surgery within a few years or maybe sooner.

My first period was awful afterwards and I've had pretty much constant pelvic pain and lower back pain since my op. He said this is normal post surgery and to give it 3-4 months to settle. I hope this helps and I wish you a speedy recovery.

Sophie x

[KlP28 in reply to soph09]

Hi, I had a mirena coil fitted during my laparoscopy like you. I didn’t see the benefit for atleast 6 months post op. Stick with it for now. I hope it helps you too! I also now take amitriptyline (20mg) of a night which seems to help with the nerve ending pain which is common after op.

Take care xx

[soph09 in reply to KlP28]

I'm trying to hang in there but it's testing me at the moment! ☹️ . My periods are lighter already but longer , I've got constant spotting and I get a lot of pelvic pain, but I'm trying to persevere! I was only offered Mefenamic acid but I might ask about amitriptyline when I see my consultant next month! Thank you xx

[Sophhh in reply to KlP28]

I’m so glad you got diagnosis and treatment

Where did you have your surgery? I’m wondering who your consultant was as I was Derby UK with Mr Amer

There is nothing on the NiCE guidance about hormones slowing the rate of growth

I’m really struggling with this constant pelvic and leg pain

I feel like things should have improved since the op but now feeling back to square one. I don’t know why I would continue taking the pill if it is causing these symptoms

I’ve made a GP appointment this morning to talk things through so hopefully can get some clarity but I doubt they will know. Does anyone know how easy it is to get advice from your consultant before next appointment?

[Sophhh in reply to KlP28]

I’m so glad you got diagnosis and treatment

Where did you have your surgery? I’m wondering who your consultant was as I was Derby UK with Mr Amer

There is nothing on the NiCE guidance about hormones slowing the rate of growth

I’m really struggling with this constant pelvic and leg pain

I feel like things should have improved since the op but now feeling back to square one. I don’t know why I would continue taking the pill if it is causing these symptoms

I’ve made a GP appointment this morning to talk things through so hopefully can get some clarity but I doubt they will know. Does anyone know how easy it is to get advice from your consultant before next appointment?

[Sophhh in reply to soph09]

I’m so glad you got diagnosis and treatment

Where did you have your surgery? I’m wondering who your consultant was as I was Derby UK with Mr Amer

There is nothing on the NiCE guidance about hormones slowing the rate of growth

I’m really struggling with this constant pelvic and leg pain

I feel like things should have improved since the op but now feeling back to square one. I don’t know why I would continue taking the pill if it is causing these symptoms

I’ve made a GP appointment this morning to talk things through so hopefully can get some clarity but I doubt they will know. Does anyone know how easy it is to get advice from your consultant before next appointment?

[Avourneen]

The combined pill is a strange choice as it contains oestrogen and feeds the endo. Normally gynaes will prescribe the coil or a progesterone only pill. The progesterone is believed to slow the growth of the endo by reducing the effects of too much eostrogen. So I think th ePOP would be a much safer bet.

Also there is some evidence that being on the ill just masks the worst pain at the time of your period and allows the endo to keep growing, this is especially true of the combined pill.I would get a second opinion, the combined pill won't stop the endo growing and it's odd that your gynae would suggest it. Is your gynae a specialist gynae for endo?

[Cocoacupid]

I also received my diagnose back In April this year. I have the coil I had the coil fitted in my mid to late twenties and then again I tried it 4 years ago. For me it hadn’t done anything as I have a frozen pelvis bowel involvement other organs and I had a large black / purple endometioma and deep infiltrated endo so am not sure it helped much. I get spotting and had a heavy bleed with clots for seven days but since op for diagonisis only get spotting now the pain still really extreme so for me coil has not helped apart from stop me having really heavy painful periods that would last up to nine days. I couldn’t have the pill though as tried them all and I would still get extreme heavy periods and it was as if I wasn’t taking anything. Have had memofenic acid and also transoceanic acid both didn’t help much at all. I really do think though it depends on the individual person .take care