the pill: hi, has anyone had positive... - Endometriosis UK

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the pill

PinkPrimrose profile image
13 Replies

hi, has anyone had positive experiences of coming off the pill?

I had a laparoscopy last year but still experience daily pain and flare ups, honestly I hate taking the hormonal contraceptives but everyone says if I dont then my endo will get dreadful, welcome experiences/thoughts xx

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PinkPrimrose profile image
PinkPrimrose
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13 Replies
OlgaSz profile image
OlgaSz

HeyI had nothing but positive experiences with coming off the pill. I am sure I will never take them again.

The topic has been extensively discussed here, so maybe browse the forum. You may find many answers here. 😊

PinkPrimrose profile image
PinkPrimrose in reply to OlgaSz

Thanks, I will definitely search for that topic! Glad you’ve had a positive experience xx

Hooplove00 profile image
Hooplove00

I’m in the same boat 😅 had my lap in May, though. I’m terrified to come off of it and am especially worried that my doctors won’t take me seriously if I do. Does your pain make you bedridden for the most part? Are you able to function well?

PinkPrimrose profile image
PinkPrimrose in reply to Hooplove00

Hiya, so sorry your lap didn’t resolve your pain. So my pain is a little different to others I’ve spoken to, currently with being on the pill I experience daily constant pain (lower level to the flare ups but non responsive to pain meds), I also experience flare ups and these can be bad. Trouble is, before I went on the pill my flare ups were so much worse so I am scared that I’ll experience them again plus then worse lower lever constant pain!

Is this similar to how your pain is?

My main reason for wanting to come off the pill us from a mood/hormonal reason as I dont know about you, but I am sick of constantly being on hormone altering meds… xx

Hooplove00 profile image
Hooplove00 in reply to PinkPrimrose

My pain sounds very similar to yours! Yet, I get treated like it’s all in my head and is psychosomatic. I have PMDD too, so I think that the pills are messing with my mental. Yea, I really don’t like being on hormones. I feel like my mood before op was off because of the constant pain. Haven’t seen how I’d be without the pill. But doctors always demand that that’s our only option🙁 maybe I’ll try a week and see how it goes.

OlgaSz profile image
OlgaSz in reply to Hooplove00

I didn't get my diagnosis until I refused to take pills any longer... My doctor tried to scare me off saying that if I won't take pills I will have to go for a laparoscopy. I agreed without any hesitation that really surprised her. Only during the lap they found my endo.

Doctors are pretty funny when it comes to pills. I had the worst side effects on them, yet I was told to just "be strong".

My pain is pretty manageable at the moment - I stopped taking any painkillers, due to side effects, but ginger tea helps tremendously (research say that it will become more effective the more it is used), along with hot water bottle and daily yoga. There are many lifestyle changes that I implemented, but I would never come back to daily pills - both hormonal and painkillers.

Hooplove00 profile image
Hooplove00 in reply to OlgaSz

Isn’t that something? “Give it more time” “The side effects are not as bad as the pain that you’d experience without them”. Doctors treat every persons body textbook wise, too. Not everything works for everyone and everyone’s response to things very. Birth control may be a great option for some, but not all. Glad you were able to find things that have worked for you without the use of pills 😊🙌🏾

OlgaSz profile image
OlgaSz in reply to Hooplove00

It was very awkward with my doctor to go off the pill. When I told my gynae that I won't be taking them any longer and we decided on the lap, she was very persistent in convincing me to get a coil. I told her many times that I don't want it as it is still the same hormones that made me so miserable in the form of pills, but she was still insisting. I had my lap on NHS, but in a private hospital, where the surgeon asked me about the coil again, I said no again and he said "your body, your decision. You know best what is best for you". I really wanted to hug him for that!

Hooplove00 profile image
Hooplove00 in reply to OlgaSz

I love that for you! Hoping that one day I’ll receive that same time of care. I have other underlying stuff going on, so thinking it won’t entirely solve the pain. But maybe it will at least lessen what I feel. How did you feel when you had first stopped taking the pill? Did it take a bit for your body to adjust?

OlgaSz profile image
OlgaSz in reply to Hooplove00

Mentally I felt better straight away, as I knew they were making me more sick. Side effects didn't go away straight away, but I was feeling better by day.The biggest issue for me was that, among many other things, I was bleeding non stop while on a pill. Like for months without a day of a break and not spotting, but bleeding full time. After I stopped taking pills my bleeding stopped within a few days. it was the biggest relief ever.

Hooplove00 profile image
Hooplove00 in reply to OlgaSz

That gives me so much relief to hear! I bleed for almost 3 weeks out of the month. I’ll have my cycle then breakthrough bleeding. The cramps are awful!! My gyno has basically said that I have to stay on it or else I’ll have pain, and of course it worried me.

OlgaSz profile image
OlgaSz in reply to Hooplove00

I am really sorry that you have to go through it. It must be very hard!I am very happy now and I am pretty sure I won't go back to the pill. I am better without it.

Whatever your gyno says, please remember that it is your body and your endo. You are the one who deals with symptoms, side effects and flare ups day in and day out. The final decision is always yours. 🤍

Hooplove00 profile image
Hooplove00 in reply to OlgaSz

Thank you for this 💛

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