Is Hormonal Contracpetion my only option?

[bagelgal]

Hi All,

would really appreciate some advice about this as i feel very lost right now!

I was diagnosed with Endo back in August 2024 - but was gaslit and the endo was not removed during my laparoscopy because it was deemed “superficial” and hadn’t spread deeper.

I was fitted with the mirena coil during my operation, which i had concerns about as i really don’t want to be on anything normal contraception that disrupts my cycle. But i have been told by countless GP’s and specialists that it is the only form of treatment.

I have been bleeding everyday since having the coil fitted and my symptoms of endo have no improved.

any advice or story’s on what methods of treatment have worked for you?

Thank you guys!

[FrecklesandFlowers]

Hiya, contraceptives aren't the only treatment because there is surgery and pain management as well. However, I think contraceptives are probably the preferred method for doctors in between surgery/if surgery isn't an option/if you aren't trying to conceive because the theory is that stopping your periods will reduce the likelihood of new endo tissue growing (it doesn't get rid of endo, just reduces the spread). Unfortunately our hormones are bound up in this mess and we can't really escape that, but it is your choice when it comes to treatments.

I've never had the coil but I'm on the combined pill at the moment, I take it continuously for 3 months so I only have 3-4 bleeds a year. I personally love the fact that I get fewer bleeds as that's when I was getting the worst pain, but it's totally fine if it's different for you, it's just a case of finding what works for you. The one I'm on now is fine overall, but it took a few years of trial and error to find what works, and even with this current pill it took around a year for the side effects to calm down. It's definitely a trade off between the costs and benefits, you just have to decide where you're willing to compromise.

As it's been a good few months since you had the coil and you can definitely say you waited for your symptoms to improve and they haven't, I'd say you're well within your rights to ask to have it removed and started on something else instead (if you want to). If you want to keep the coil in, maybe ask the GP for stronger pain killers or a physio referral depending on your symptoms x

[Bellebell in reply to FrecklesandFlowers]

Agree completely. I have painful and irregular bleeding, sometimes for most of the month. I've not had the coil but I also take the pill from time to time for a few months for some relief. However, a couple of years ago, I was pretty much told by the gynae department (and bullied) that the Mirena coil was my only option to help with heavy bleeding and blood clots. One of the doctors suggested I wouldn't be offered any other kind of help... I still refused as it's my body, and I also had the concerns that you have experienced.

One thing that might help you especially if the endo is not expansive is dietary changes. Different things work for different people (and it's now been scientifically proven in The Guardian!) but cutting down/removing dairy/alcohol/meat/caffeine/gluten, etc. can reduce the pain and apparently stop the endo from growing/spreading in some cases as these things can affect your hormones. Cutting out dairy worked a treat for me but it might be something else for you. You should look into it.

[BusyLizzieP]

Hey, there are a couple of good books that I’ve found helpful in making lifestyle changes to support with endo without hormonal medication. Heal Endo by Katie Edmonds and Beat Endo by Iris Orbuch and Amy Stein. Nothing is a silver bullet but these books have helped me take a bit more control and helped alleviate some of the pain and symptoms I experience throughout the month.