Contraception/hormone free Endometriosis - what’s your experience?

[LokiSunflower]

Hey warriors 💛

I am awaiting for another operation to remove as much endo as they can and I am thinking of possibly getting them to remove my coil rather than replace it.

I was wondering if anyone would be able to share their experience of managing endo without the use of contraceptives/hormones?

[fdennis07]

Hey there, after my laparoscopy in 2015 to treat my endo, I stopped hormone treatment etc as we wanted to try for a baby. The first couple of years were ok for me but then the pains started coming back again and now it is really really bad again. I'm 33 and now looking at getting a hysterectomy as we have decided not to proceed with fertility treatment.

Personally, if you aren't looking to try for a child straightaway I would continue with hormone treatment to slow the growth of the endo reoccurring. Others may have done better than me though hormone free!

X

[Afrohair]

Hi there I can only comment on my experience and it’s very different to the other poster I have NEVER had a laparoscopy and I started having pains last April endometriosis was confirmed due to having endometrial nodules on examination by an endo specialist pain persisted for much of the year stopping everyday life however I changed my diet to the endo diet and started taking a range of vitamins and minerals daily you can see from my posts what these are I have next to no pain and I’m not on contraception I had a baby in that time which sadly ended at 12.5 weeks I am still trying to conceive as there is no evidence to suggest this was caused by endometriosis and my specialist advised me to keep trying for this reason don’t give up hope on yourself all contraception did was make my endo worse and I bled for months also if your are fine with the coil though it is one of the best treatments for endo it’s your choice xx

[Marcia71]

Best treatment for endo is excision which would be done at laparascopy. I didn't find any great relief from hormonal treatments of any type and generally just ended up with migraines all the time. If the coil is working for you maybe try a progesterone only pill as that is much easier to stop when you want to try to conceive.

[annatonina]

There's no harm in trying it without, if its much worse then you can always get a coil put back in if it worked for you. I had mine removed at my lap in 2018 because I'd linked the worsening pain to the coil in my head - I knew it probably wasn't the cause but at that point I was in so much pain I wanted everything out. My pain decreased for a few months but then came back so I had a coil put back in in February and it's been a rough ride, I had solid almost unbearable cramps for 3 weeks without respite, ended up in A&E with them (who totally dismissed me as just the coil settling - duty doctor happened to be someone I'd seen in practice before who had told me it was all in my head and now looked surprised to see endo on my record years later). Its settling now but I'm still on the fence about whether the pain is worse than without it or not. I'm giving it a few more months but I may get it removed again and try something else. Although there's very few types of birth control I haven't tried now!

[Emsy]

Hi I have been on progesterone only pill for 2 years and it felt like a gift as after bleeding for 18 months and then nothing I was over the moon! But I stopped the pill to start ivf and as soon as I came off it it felt like my bottom was down to my knees v painful (and after all that couldn't start ivf cos of pandemic!!) if I were you I'd have a back up plan and think about how long you can cope with pain if it does come back. I think we are all different so trial and error. Good luck xx