Mirena coil - rectovaginal endometriosis

[Lilac_10]

Hi,

I was diagnosed with endo earlier this year and had excision surgery. Due to continued bowel symptoms I had an MRI following my surgery which shows that I still have active rectovaginal endometriosis so I’m waiting to be seen by the specialist endo team. I agreed to try the coil whilst waiting for my appointment. I’ve had the coil for about a month - I initially had significant daily pain for a few hours a day, alongside daily bleeding. The bleeding has now settled to light period/daily spotting and the pain is slightly less severe or less often, but I’m still experiencing significant daily pain in my legs, back, pelvis, rectal and vaginal area. My consultant did warn the coil may flare my symptoms at first and I’m aware it can take 3-6 months to settle but it’s hard at times to consider continuing for that long. Mentally it’s taken quite a toll. I’m desperately trying to persevere as the benefits could obviously be life changing if it works. I’m hoping to make it another 2 months at least so I can say I gave it a good shot.

I know everyone’s different but I was just wondering if anyone has had symptoms for this period of time and still managed to have success with the coil? I don’t usually have daily pain in all these areas. These areas are usually painful during or in the lead up to my period - my daily pain is usually in my abdomen as well as my ongoing bowel symptoms.

[Fizzypoptastic]

Hi there,

I had the Mirena implant in Feb 2022 & the symptoms & bleeding/spotting took 4-6 months to settle down but it was a game changer for me. I also had excision surgery for stage 4 endo (March 2023) where they had to leave behind a significant chunk close to my bowel as they needed a multi disciplinary team present. The Mirena was changed during surgery. I’m glad I opted for the Mirena as it has worked miracles for me. I do get side effects like headaches, low mood etc but it is a small price to pay as compared to the horrendous symptoms I had to endure without it.

Wish you the best of luck with it. Xx

[PurplePizza1994]

Hi there - so sorry you're going through this. I'm in a very similar position - endo found on MRI in pouch of douglas and ultrasacral ligaments. They suggested I try the Mirena coil while waiting to be seen by the specialist team, which I did about 4 months ago. For the first 3 months I was totally the same as you, bleeding constantly and awful pain that was way more regular than my pre-coil pain (used to just be the days leading up to and including my period). Had a huge effect on my mental health. The pain I now get with the coil is also slightly different, I feel it just behind my belly button as well as general lower abdomen cramps.

The positive bit of this is that after 3 months, the bleeding did slow down, as did the pain. I'm now almost 5 months in, I still get very low level pain most days but it's a lot better than it was. However my mood and sex drive are both much lower than pre-coil, so I'm also wondering whether this is all worth it.

Ultimately you know your pain and your own body, and if it's too much then go back to your Drs and ask for advice. Hope everything improves soon x

[endo_the_stigma]

Hi lovely, I'm so sorry you're going through it💔

I had the mirena inserted during my surgery in June and since then it's been an absolute nightmare and the doctors think my body is rejecting it because I'm bleeding almost constantly and the pain has been horrendous. Don't get me wrong, I have also been told that not all my endo was removed so that will be a contributing factor, but I can tell most of the time that it is the coil playing havoc with my body and needs to come out. It hasn't been six months yet but I knew within a few weeks that it wasn't going to work for me - if you know you know.

Hope you get it sorted and the pain improves for you.

Much love,

Lily💛💛