So I finally got to see a gynaecologist and she’s said it’s very likely that the ‘free fluid’ in my pelvis is blood from endometriosis but obviously without a laparoscopy she can’t officially diagnose. I was a bit hesitant about having a surgery, so she’s said I should trial the mini pill / Mirena coil and then she’ll scan me again in a year to see if the blood is still there. If so she’s said I should reconsider a laparoscopy.
Am very confused as she pushed on the bc to stop it causing more damage, then ‘have a baby’ narrative. However have done some reading that suggests the pill/coil doesn’t necessarily stop it from growing, but just masks the symptoms, so maybe I should’ve just asked for the lap. But am also worried, as my doctor friend said that unless you desperately need a lap, to no do it as it just causes more scarring and it’ll keep growing back anyway 😭😫.
Assuming a lot of people have trialled the pill/coil and then still ended up going for a laparoscopy? And did you still have endo flares?
Thanks!
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Hi, I think this is very much down to personal preference. I had the mirena coil for about 6 years until last week. I had my first laparoscopy last week to see if i have endo (which it confirmed I do), and prior to this the gyne suggested I go on dienogest before having a lap to see if this helps on top of the coil. For me, I didn't want to take dienogest on top of the coil hormones unessecarily, and wanted the lap so I knew for sure if I had endo and what my fertility is like for the future etc, so I went straight for the lap.My experience of mirena was positive to be fair, but I had it removed during surgery as I want to know what it's been masking all these years. I could be wrong, but my understanding is that it more 'masks' the symptoms rather than preventing growth. I guess it depends on your main concerns and how you feel about hormonal contraceptives etc! 😊
Yes that’s what I’m finding difficult to navigate! The gynaecologist implied that birth control and having babies are the only way to ‘stop it growing’, but that doesn’t seem to be the case. There aren’t many studies but I read that it only really helps in 15% of cases and in the rest it’s just masking. Obviously I’m happy to do that if it stops the pain, but think I might also ask to be put on the waiting list for a laparoscopy. Have had the pain for 10 years now so want to have it confirmed/ see how bad it is!
I would still go for a lap. I had a lap in Aug 22 where some Endo was seen but not removed and the Mirena was put in. Fast forward to Feb 24 when I finally got my robotic excision of Endo, I ended up having stage 3! It doesn’t stop Endo growth so it wouldn’t get rid of it or make things better. Only benefit I have from the Mirena is I don’t bleed anymore but that’s a miracle for me
Hi! The Mirena ruined my life for 3 years and I was so traumatised by it all I didn't even get it removed until surgery. It shut down my bowels for three years, gave me trapped gas cramps which felt exactly like endo cramps and also cervical cramps. This happened all month. All of this extra pain stopped when it was removed. I also went up two dress sizes and got diagnosed with a hormone related chronic skin disease... I appreciate that some people have a good time with it but ny experience was so terrible. Gynecologists push IUDs before they will take surgery seriously, it does not need to be this way! Please don't let them pressure you if your gut tells you it won't work for you. Prioritise the lap!
Hi- thanks for replying! I’m really sorry that that’s been your experience.. sounds absolutely horrendous This is what’s worrying me about having the Mirena put in. I assumed they’d be able to just take it out again asap, but don’t want to get stuck with it for years 😫
Thank you ❣️ it was so bad it still shocks me but it did get me infront of a endo specialist so for that I am grateful. If you're keen on trying it ask for it to be inserted during the eventual lap, this is the best way for endo patients and decent gynaecologist should be understanding of that, my insertion was so horrifically painful that even when I did get a refferal to a new gynaecologist to remove it (a YEAR wait) I couldn't go ahead with it due to fear. GPs can remove them but you'll have minimal access to pain meds and someone who does not do them as regularly playing russian roulette with your cervix. Say you'll try the mini pill even if your decide not to take it. All they're doing is trying to delay surgery and diagnosis! I had issues using tampons and knew the iud would not work for me and I was right, if your gut says no trust it. You should also avoid surgery with a gynaecologist and ask for a refferal to a endo specialist if you feel like you're able to advocate for it. You'll have a much better time with surgery xxx
Thank you super helpful I might do that re ‘trialling’ the mini pill as feels less permanent than the coil.. and in the meantime will try and find a specialist for surgery. Can always get the coil put in during the surgery if I decide I want it
From my experience gynae are very quick to dissmiss you if you arent on the pill or some type of hormone therapy. I was referred to gynae after having a kid (endo came back worse) in feb told because i hadnt been on the pill for longer than 6 months (it was 6 months at that point to no difference) they discharged me without seeing me, my gp rereferred me in april so had to start the whole waiting list again.
I paid to go private for a consult and they told me about a new pill called slynd, its on the nhs formularly but my area doesnt supply it, annoyingly so cant get it at the moment. Its "supposed" to be better for endo.
For me the only good the pill does is being able to control when i have a period, otherwise it makes no difference to me symptom wise. I really want to come off it but keep being advised not
I still had a laproscopy whie on the pill. I was told to come off it before due to blood clot risks during surgery, i was off it for 3 months due to my sugery being moved round and i genuinely felt better and lost weight.
I hope that helps but i will also stress this is my experience of the pill, others may find it helps alot.
Hi - thanks for replying Yes I’m a bit all over the place with what to do. Am willing to try the pill but have heard that a lot of people still struggled with pain.
The gynaecologist I saw seemed to think that the free fluid in my pelvis is blood from ‘retrograde menstruation’ which my have caused endometriosis. So the pill should stop that and the blood should be reabsorbed… will see! My main worry is getting stuck on the pill even though it isn’t helping. I didn’t realise you have to come off the pill before surgery so trialling the pill might just delay the process. Maybe I should priorise surgery instead and have the Mirena coil put in during?
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This is what’s worrying me about having the Mirena put in. I assumed they’d be able to just take it out again asap, but don’t want to get stuck with it for years 😫
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