Advice on coming off pill with Endo...any... - Endometriosis UK

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Advice on coming off pill with Endo...anybody else been in the same situation?

Chloelouise92 profile image
9 Replies

So I was diagnosed with Deep infiltrating Endo on my pouch of Douglas and uterosacral ligaments last month but they weren’t able to remove it during the lap so I’m awaiting further surgery. I’ve been told potentially 8-12 months wait, even though it’s been marked as urgent and would hopefully be done in 3-4 months best case scenario. However with Covid on the rise again I can’t see it being any time soon.

I’m in pain daily and can’t walk properly, but I’ve been on the pill for 13 years now. Basically I’m worried that if the Surgery isn’t done soon it’s a waiting game in terms of fertility. Me and my partner have considered our options and I’m thinking of coming off the pill to try for a baby. I wondered if anybody had been in a similar position? I’m really worried that my pain will worsen coming off the pill but it’s a catch 22 as I don’t want to ever regret not trying if In future my fertility is an issue anyway. Then at least we can say we tried rather than what if.

Has anybody come off the pill before having surgery and how has it been? Sorry for the incredibly lengthy post! Thanks x

9 Replies
Afrohair profile image
Afrohair

Yes I have love I have endo in the form of nodules in my vagina and possibly the bowl as bleed out my bum on period I’ve never had surgery but was determined to fight the disease as soon as I recognised all the symptoms and saw a specialist privately to confirm I have it I went on a strict endo diet I didn’t have the pill was trialled for 3 month made my endo worse I got pregnant the first ended in misscarrige but I’m currently 21 weeks pregnant in my opinion don’t wait for surgery too many people do and you still have a fighting chance but you must be very strict with diet I will also point out that diet took my pain away I did have some painful sex but I used coconut oil which helped and I did notice endo getting worse a lot of opinions will differ to mine but I did lots of research I also used asprin and progesterone cream in between my period please read up on progesterone and endo and asprin and endo it was worth it for me cause I am now expecting a baby girl which I never thought would happen I was advised on this site to wait by some people but as you know endo is a permanent disease there is no cure so why not try your best to fight it ?no surgery needed!a few books what helped me is Laura Birden the period repair manual x

Chloelouise92 profile image
Chloelouise92 in reply to Afrohair

Thanks for the reply lovely and I’m so pleased to hear you’re expecting a baby girl! I think I’m just going to try and see what happens! Otherwise I’ll never know anyway. All the best! X

Afrohair profile image
Afrohair in reply to Chloelouise92

Right that was my thoughts exactly and when you are off the pill you get to know your body more and what food trigger it !the diet is very strict no gluten diary lots of cooked and fresh food but I believe if you stick at it you will have a baby.definatley look into asprin and endo cause I believe once I took the right vitamins and started asprin therapy and progesterone it really took the pain away I felt normal again .And once your pregnant the endo goes smaller I’m proof of this as my endo nodules have shrunk.

Chloelouise92 profile image
Chloelouise92 in reply to Afrohair

Okay thank you, I will have a look in to the diet side of it as well. Hopefully I will be fine and then just have the surgery at a later date 🤞🏻 X

Afrohair profile image
Afrohair in reply to Chloelouise92

Diet is very important in fighting endo very !

b_bart88 profile image
b_bart88

I came off the pill six months before we started trying. The endo symptoms were horrible but I managed it with diet, pain relief etc and we conceived the first month that we tried x

Chloelouise92 profile image
Chloelouise92 in reply to b_bart88

Yeah I think I’m going to see what happens and go with it. What pain relief did you try if you don’t mind me asking? Aw that’s great news! I just don’t want to regret in the future not trying and it’s not like I’m getting any younger! X

b_bart88 profile image
b_bart88 in reply to Chloelouise92

I fine mefenamic acid and cocodamol work well, if it’s a really bad one then I get tramadol. Tranxemic acid is also really good if your period is heavy!

That’s what I thought too and I was surprised that I could get through the six months before I got pregnant because I was so scared of how bad the pain would be but it was worth it for my little boy :) x

Chloelouise92 profile image
Chloelouise92 in reply to b_bart88

Okay thank you maybe I’ll try that. I’ve had tramadol before and don’t get on with it but I’ll try the combination of the other two! Thanks for the advice. That’s what I keep thinking, it will hopefully be worth it in the long run x

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