Unsure if endometriosis is controlled - pain present.

[Callymera]

Hello,

I'm so relieved to have found this community! Thank you

I was diagnosed with stage 2/3 endometriosis in early 2008 aged 24, this was after about 8 years of doctor's visits and oral pill trials (none really contained the symptoms or agreed with me). I had the laparoscopy to remove lesions in September 2008 (after a diagnostic laparoscopy in the May) and was fitted with the mirena coil. I remember being told after the operation that some precariously placed lesions on the bowel were left untouched as to attempt removal may have caused more harm. So, I can't remember how I fared with the mirena for the first year or so but had it replaced in 2013 and was largely happy with the relief it had given. I have a few questions as the coil has been on my mind a lot lately and I'm wondering if it's still the best option for me. Apologies if these questions are repeated in other posts:

1. I have sporadic period pain ranging from dull ache for 5/6 hours to intense, pre-2008 'punch you in the tummy' pain for an hour or so. Face drains of colour and hot flushes. Back pain - the works, basically. Is this common for others? Or, could it be a sign that the endometriosis is not controlled and will get worse? The pain seems to be totally random and doesn't seem to follow a cycle.

2. I also have sporadic bleeding/discharge though never red, usually brown but most recently, a really pale pink discharge. Does anybody else experience this? Again, random timing and no cycle.

3. I'm not sexually active at the moment but was dating 11 months ago and sex was painful (again). Previously, with my boyfriend in 2010/2011 sex was only painful intermittently and more enjoyable than not. Has anybody else experienced the return of pain during sex? Any ideas why?

4. Can endometriosis continue to form after the laparoscopy/mirena fitting? I'm hesitatnt to have another operation to find out as was advised each operation risks the forming of new lesions.

I know my questions are a bit broad but any advice would be really appreciated. I've just yesterday read that 1 in 3 women with endo can become infertile and am honestly scared.

I don't know whether to have mirena removed as I'm also feeling a bit 'congested' and not entirely comfortable with the thought of it anymore. Although, if I thought the endometriosis would come back I'd keep it in.

Thanks so much for reading,

Lisa

[K_ay]

I had mirena fitted last sept during operation to remove endo. Was sold mirena was the best thing to slow down regrowth of endo. After a couple of months the pain had returned surgeon said he thought it was due to scar tissue and was convinced the endo would not have returned so quickly. Had another lap in August and he found 5 patches of endo he said he was very surprised to find it after only 11 months. So no the coil does not allow it down for everyone and basically the have no jeffing idea it's just trial and error

[K_ay in reply to K_ay]

I get the brown discharge on and off this is common with the mirena

[Callymera in reply to K_ay]

Hi Kay, thanks for your response. Is it just a case of seeing if you can get pregnant when the time comes then? And, before this, if symptoms seem to be back then I should go to the doctor...again?