Follow Up... : Hey Guys, I had my follow... - Endometriosis UK

Endometriosis UK

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Follow Up...

Paigelouisex profile image
12 Replies

Hey Guys,

I had my follow up from my op today and i’m a little disheartened. So he told me the endo was infront and behind my womb and also attached to my bladder. He’s suggested taking the pill back to back for 3 months - has anyone else done this and had success?

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Paigelouisex profile image
Paigelouisex
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Ellie386 profile image
Ellie386

Many people have relief from endo from tri-cycling the pill (I did it for 18 years) as obviously it reduces the pain associated with periods. However it's important to understand that the pill only provides relief of symptoms (and in some people slower re-growth). It is not a cure and I'm not sure what they are going to achieve only asking you to do this once...? Also beware of being on the combined pill for too long as I had the most horrific experience quitting it really messed with me mentally and physically. To the point where I will never have hormonal treatment again. I know mine is a story of extremes but honestly the best relief I have ever found is diet and yoga (snooze I know). Oh and reducing my alcohol intake quite a bit 😫

Paigelouisex profile image
Paigelouisex in reply to Ellie386

Sorry I didn’t explain it properly, they want me to take it for 3 months then have a break continuously so I just have 4 periods a month. Yeah that’s what i’m worried about I have depression and anxiety x

Ellie386 profile image
Ellie386 in reply to Paigelouisex

Ah ok well as I say thats what I did for 18 years and I cant say for sure it didn't slow the progression down. But quitting cold Turkey cold turkey was the absolute worst experience of my life. I guess our bodies get used to relying on synthetic hormones and it forgot how to produce its own. Took me 6 months to get my periods back, I lost a TONNE of hair (I dont have a thyroid problem), I have had to go back on antidepressants and am still in counselling. Everyone is different so I'm not saying this will happen but I think doctors quickly jump to handing out pills without thinking about the long term impact on women...so that burden falls to you. Perhaps try it for a while and see how you go, but please dont think it's an easy long term solution. CBD oil helped me deal with the anxiety massively if thats any use x

_EndoWarrior_ profile image
_EndoWarrior_ in reply to Ellie386

Same can be said for prescription drugs like Zoladex, Lupron, Orilissa etc

They can have awful side effects and sometimes permanent too.

Paigelouisex profile image
Paigelouisex in reply to _EndoWarrior_

he’s just put me on microgynon for now he did mention zoladex if this doesn’t work, what are the permanent side affects?

_EndoWarrior_ profile image
_EndoWarrior_ in reply to Paigelouisex

My gynaecologist asked if I wanted to go on Zoladex short term if symptoms were bad until I got my operation as I was in a waiting list. I said no!

You can search the effects of Zoladex once you join the Education Group I mentioned below. Ask the question in the search bar and you’ll get research reports, other people’s experiences on it etc.

_EndoWarrior_ profile image
_EndoWarrior_

Sounds like you may have Deep Infiltrating Endometriosis which is what I had.

The pill basically masks Endometriosis pain and can regulate menstrual bleeding.

It will not stop the spread/growth of Endometriosis as Endometriosis produces its own oestrogen. The only thing that can treat Endometriosis is excision surgery by an experienced Endometriosis Specialist either on the ‘BSGE’ centres list or the best experienced ‘Nook’ Drs.

You can look up BSGE centres or join Facebook’s ‘Nancy’s Nook Endometriosis Education Group’ which will help you make the best decision for yourself.

I must emphasise this is an Education Group not a support group. You have to answer the 3 security questions and then you have to wait a week which gives you time to read the Basic Information Files on Endometriosis and then you can comment or like a post. Good Luck!

facebook.com/groups/4181369...

Paigelouisex profile image
Paigelouisex in reply to _EndoWarrior_

Thank you i have just joined

_EndoWarrior_ profile image
_EndoWarrior_ in reply to Paigelouisex

I’m glad. I read so many posts from people suffering unnecessarily and getting the wrong information. It makes me so sad and angry that it still keeps happening. If I can help one person go in the right direction and get the right help then that’s brilliant.

I hope you find the answers and the help you are looking for. 🙂

Paigelouisex profile image
Paigelouisex

Yeah I do, I think it’s spread to my sciatic nerve too 😭, when I had my lap they burnt off the endo of the bladder but he said it will grow back 😔. I have just joined the group thank you

Paigelouisex profile image
Paigelouisex

Yeah I do, I think it’s spread to my sciatic nerve too 😭, when I had my lap they burnt off the endo of the bladder but he said it will grow back 😔. I have just joined the group thank you

Bubblepoppy profile image
Bubblepoppy

I've been on the same pill just in my 2nd 3 months of taking it, I've had no side effects but for the first month I was on a very long and horrible painful period which I wasn't used to, but calmed down and eventually stopped the only difference it has made for me is that my painful periods have stopped I still get the daily pain waiting on a lap and ablation hope this helps x

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