I wanted to see whether anyone else has experience the same thing.. So I’ve had endo for over 14 years (not diagnosed for 12 years and took 2 years or so to have most of it excised out), 10 years of that I was on the pill as was advised I had to be to help my symptoms. When my endo really kicked off I had been on the same pill for 8yrs, so I was told to tricycle, then that didn’t work and they changed my pill, had to tricycle that and during those years my symptoms were at their most viscous and my endo grew at the fastest rate it ever had.
I had excision of the endo this March, very big op and only a little endo was left on my diaphragm. My symptoms improved for some time but then gradually I felt them creeping back. The heavy led ball pressure feeling in the rectum, stabbing pains, fatigue you all know how it goes!
So I’ve had to stop taking the pill as we’re now TTC and an adynoma on my liver due to taking the pill for so long. I was really nervous as all professionals had said it would be ‘interesting’ when I come off the pill.
Amazingly, since coming off the pill, my pain levels have been SO much better, fatigue has lifted, and I just had my first natural period and that only lasted a couple of days (unheard of for me) and the pain was normal period pain aside from a few endo prangs and burns here and there. Couldn’t even compare it to previous symptoms.
Has anyone else actually felt better coming OFF the pill?!
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BlueTit98
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Hi, For most of my life, the pill did make things easier for me, and stopping it always meant that things got worse.
However, you do not say what age you are. Is it possible that you are approaching menopause? If you are, your oestrogen may be falling naturally … but, if the pill you were taking was a combination of oestrogen and progesterone, then the extra oestrogen in the pill may have been making your levels worse - hence the pain, and, thus, the decrease now.
I was made to stop the pill, at 50, and my pains became dreadful. However, a mirena coil, was eventually fitted, and this was brilliant. It is just progesterone, and as the coil is in the uterus, the hormone is in its target area, so it can be a much lower dose than in pills, and even the progesterone is not coursing all through the body, as it would if in a pill.
If you find that your pains do return, you might ask about having a mirena coil fitted , as it can counter the oestrogen that causes most of our 'endo problems', and I found it a lifesaver! …
Sadly this doesn't apply if you are decades away from menopause, and I'm afraid I don't have any explanation for you, but I will keep my fingers crossed that the pain continues to stay away.
Of course, if men had to suffer this it would all have been solced decades ago, instead on millions of women world wide still having their lives ruined.
Sorry for the tub-thumping. Hope all goes well, have a good Xmas.
Thank you 💛 not tub thumping at all, I completely agree with you 👌🏻
I’m 28 so not approaching that time yet...who know what’s occurring in that case! I guess every body is different. I think they are just stabbing in the dark to be honest. It definitely helped for several years but then the endo was absolutely viscous particularly with Yasmin.
The marina coil was an option but as we’re TTC it’s not something I can try at the moment. If my endo symptoms stay mellow I’ll just go with what works, it’s good to have some options.
It will be interesting to see whether anything happens in the research and treatment front for us now that some more awareness has been raised, I completely agree if men suffered with this we would have many more answers! How long have they had viagra?!!
Anyway sending you warm wishes and I hope that your pain and symptoms stay away and hope you have a lovely Christmas 💛🎄 x
Hello everyone, My operation for stage 4 endometriosis is on next Jan. could anyone help me to know the possible recovery time for this stage, and what is your opinion about mirena coil? Is it good option?
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