To stay on hormone control for life or take my 3 month break?

[Jaas1]

Hi Ladies,

I hope that you are all well!

Quick question. I have had endometriosis for around 2 years and had a lap last year to remove it. I went to see my gynecologist yesterday about certain things...cut a long story short, I have been on the evra patch for around 5 months now and every 3 months I was told to take a 1 week break then carry on for another 3 months but because I was in pain during that week of being off the pill she recommended that I don't come off it at all and continue until I want to conceive (around 2 years time).

Now...I was very much against taking ANY form of medication to begin with but now I'm being told to take it without a break. To ease my concerns she told me that it wouldn't have an effect on my body if I stay on it because all that happens is that you get withdrawal bleeding due to an instant drop in hormones when you come off the pill so you don't have a period which leads me to think that not having a period for that long is bad for me or could lead to even more problems later in life? I am only 24 years old and she did say I should not encounter problems with conceiving. Should I stay on hormone control for life or should I take my 3 month break?

I just wanted some advice as to what to do?

Much love

Jaz x

[luthien]

I'm not sure how it works taking the pill continuously for 2 years. I was only ever advised to take it for four months back to back at a max. Possibly an idea to find out what the side effects are taking it longer back to back.

The bleeding isn't a true period as you've said; it's not caused by failure of the egg to implant - no egg, so it's just a drop in hormones that leads to the uterus shedding its lining.

I was told by my GP that because it disrupts the normal cycles, there may be problems conceiving up to a year after coming off it due to periods being irregular as the body is trying to sort out it's cycles again especially if taken for a long period of time. I was taking it for 10 years with 4 months back to back at a time. I've stopped about 5 years ago as I didn't like the idea of taking something every day.

There may be more research / studies on the long term effects of the pill and fertility, so worth looking it up.

Personally if I were you and coming off it caused pain during the withdrawal bleeding I'd want to find out the cause of that pain (if it's recurrent endometriosis) rather than masking it with hormones as whatever the problem could still be there and may not go away with medication. Plus I wouldn't want to wait until I'm ready to have children before thinking I need to find out what's wrong; conceiving could take longer while looking at that and getting yourself better (the problem I now have, as I waited).

You have the opportunity to look into what's causing the pain, as horrible as it is now, investigating it now may save you time and upset in the future, it also means you'll be better prepared for the future whatever happens.

[Jaas1 in reply to luthien]

Thank you for your reply.

If you don't mind me asking, why was you told to take a break? I was told to take a break because I didn't like the idea of being on the pill to begin with so this was just to ease me into being on the pill for a while by taking a break but apparently a break is not needed it's just psychological to give people comfort (what my consultant told me).

I too was told that it could take 6 months to a year to become pregnant which I was willing to accept but your reply has made me think otherwise (good thing!). I have tried to research the effects however there is very little, same quantity of information as endometriosis in general.

I do have a feeling that my endo has come back as I can feel it, however I didn't have a large amount to begin with and had a lap for this. I did tell my consultant that I can feel it back but she told me it couldn't re-occur within a year. She told me to take some medication to try and control my bowels as she feels this is contributing to my pain or IS the pain that I'm getting in the first place which I do believe as mine is linked with my IBS, however I'm still in pain at the end of the day and you are right I am masking it with meds which I was totally against to begin with, however there is so little research I don't know how I can in fact find a cure for this?

[luthien in reply to Jaas1]

I initially took it as a contraceptive so took it as stated; 3 weeks on, one week off. But then I liked the less painful periods so doc suggested back to back, tried 6 lots and started to get headaches so cut back to 4 lots and that seemed to balance between no headaches and manageable bleeding. This was 15 years ago mind you!

Endo can feel different each time and different for each person, as people have said on here; sometimes it comes back worse, sometimes it's not noticeable, sometimes it can be a small amount and unbearable, sometimes there's lots but not as bad. If you feel it has come back, nothing can make it go away completely, so being on the pill will essentially just make it dormant for the time on it, if it helps you feel more at peace with yourself get that sorted first so you don't worry "what happens after" when / if you do go on the pill.

From what people have said and what I've read there's no specific timeframe for endo to come back; it's always there, just not always visible or not always on surfaces as it's cells the same as the uterus lining they are microscopic and can just float. Every cycle it has a chance to come back as it's related to hormones, it may do, it may not. Unfortunately if you're prone to it, it will come back but it may be that you'll never notice - that would be great!

I have an upset stomach, it's not diagnosed IBS but it is known that IBS is linked to endo. I've controlled my upset stomach by reducing dairy, wheat and red meat. It seems to have helped, but did take 5 months for me to feel the full benefits. Docs are more than happy for you to have meds as it costs you; I always look for the non medicated option. Personally again, I think meds hide the problem: IBS, is as it says so taking medication you'll still have it but won't feel the effects. Like taking painkillers for a headache, your body is telling you somethings wrong; that somethings still causing it, you've just hidden it.

Most health things can be managed with careful eating (healthy and balanced, not diets or just random elimination of certain food groups), allow yourself some cravings Alternative therapies and natural therapies help alongside allowing yourself some "me" time away from the stresses of life; your space. Of course there are things for which modern medicine is needed.

[Abi_97]

Hi, I was on the combined pill for three months was then told to take a week break and start again when I was on it like that I broke out in acne and had to take nearly week off from work due to the pain I am now have the mirena coil and had minimal pain during my period 😮 Have you considered the coil? 🤔

[Jaas1]

Hi, I too was told to go back to back for 3 months with 1 week break. I was fine doing this, just encountered a day or 2 of pain but nothing compared to what I used to put up with. My concern is pumping these hormones into my body (like the coil) and still not able to conceive or coming off the pill to conceive and be in pain during that time of hopefully falling pregnant.

[Dee11]

I took the pill for around 18-20 months continuously. I got a lot of withdrawal bleeding but it did help with the pain which was the main thing for me. I was also told it wouldn’t affect my ability to conceive or anything in any way x

[Jaas1 in reply to Dee11]

I have been doing a bit of research and even though the doctors have said it wouldn't effect me/us long-term, they still don't have a lot of research and I feel like they use the same phrases and advice as other doctors due to lack of knowledge.

I came across one article which showed the positive and negative effects of taking the pill over a long period of time and although it showed to reduce pain, it does in fact mask the problem. It also said that being on the pill thickens the lining of the womb and excessive build up can lead to cancer in the womb however they found this was with patients who took estrogen only. At the end of the day the pill helps with pain but I would be in even more pain if it led to bigger problems or even not able to conceive so I'm not willing to take a doctors word. If taking a break doesn't harm then I think I will stick with that.

I am looking at seeing a dietitian and acupuncture to try and ease myself off the pill as I do not see this as a long-term solution. I will share any updates and recipes when I can x

[Dee11 in reply to Jaas1]

You’re right, it would never get rid of endo and you couldn’t tell if it was getting worse, but for a lot of people, like myself, who were told outright that no surgery would be getting done at that time to treat whatever the issue is then it is a good way of reducing your pain for that time period, so I wouldn’t rule it out completely if you need pain relief.

I’d be careful what you read though, pretty much everything can lead to cancer if you listen to the internet so take the horror stories and worst case scenarios with a pinch of salt! Doctors do tend to know slightly more than the internet lol, I think I’d rather trust them more (for the most part anyway) than google. If you don’t feel your doctor or consultant has a lot of knowledge about endo, then you should try asking for a second opinion elsewhere or switching consultants though.

The endo diet has worked wonders for a lot of women on here. Personally I didn’t find it effective but I did give it a try just in case. It might be worth looking into that as it’s all anti-inflammatory food x

[Jaas1 in reply to Dee11]

That's true I guess I lack faith as I diagnosed myself with endo from google and knew it was linked to my bowel and I saw 2 consultants who both didn't believe I had it. I don't obviously believe everything I read but there is potential for anything to have a slight truth to it. I guess I just don't want to take a risk on anything unnecessary. I am definitely going to look into anti-inflammatory foods ( saying that I have lamb on my desk right now...oops) maybe i'll start after today lol x

[Dee11 in reply to Jaas1]

Aw I know what you mean, a lot of Doctors really don’t get it at all. I had a lap in June as they suspected I’ve got endo, and tbh I know someone really close to the family who has it and she’s been saying since I was 15 she suspected it was that..... 10 years later they finally done a lap and still couldn’t find any! Another consultant thinks it has been missed so need to do it all again. Have you considered looking at other methods such as the coil, etc? x