Coming off the pill

[Sofie679]

I was diagnosed with endometriosis back in September after having symptoms for a couple of years. I had terrible periods growing up but just thought it was normal. My dr put me on the combined pill 2 years ago and I was told to take it for three packs then have a break. However, I just feel rubbish on the pill. I have gained weight and feel like I can’t get rid of it. I know doctors say it doesn’t cause weight gain but I’m not convinced! I’m eager to come off it, I’m just worried my horrible periods will return and be much worse and I will regret coming off it.

Has anyone come off the pill, and how was your endo pain? Was it bareable? Did you feel better coming off it?

[luthien]

I've been through similar so I understand: had heavy painful periods as a teenager, put on the combined pill 4 months back to back, was on that for 10 years, that definitely helped the period pains but not the heavy periods. During that time I had gained weight, constant mood swings, didn't feel myself and libido went too. Came off the pill and was alright for about 6 months, stayed the same as when on it.

It was about a year after coming off that I really started to get bad enough that I needed to see my gp and find out what the problem was. 6 months after that (and ruling out other illnesses) I was diagnosed via lap with severe endo. My endo was removed at the same time from my bladder and uterus, they also unstuck them. My specialist had said that yes the pill may have delayed it a little but it still progressed over the 10 years I'd been on it. Had I known that the heavy periods and period pains were not normal I may have pushed for an investigation earlier - I was told it was normal.

The weight gain isn't listed on the pill pack, but it is under side effects when you research into it, and lots of women have reported it especially with the combined pill.

I am working on reducing my weight although it is a struggle, this stuff doesn't seem to shift as easily, and I think it takes longer as you get older. I wasn't a healthy weight before so can't really say how much I gained - at age 20 I could buy 10 year old girls clothes (women's clothes would be too big), after being on the pill for 10 years I was a size 16, I think I should be a 14. I'm working on toning up rather than just losing fat, I'm fine with curves but I want muscle under there too lol!

You need to weigh out the pros and cons, how you feel on the pill, symptoms / side effects, what it helps with including contraceptive, etc. If there's more in the cons section including symptoms / side effects then you have your answer. Coming off the pill may cause your endo to progress quicker than if you were on it, but it will progress either way as you still have female hormones (you're female!). So it's really a case of when you'd want to come off it, and what for, and if so would you have treatment to remove it? You can have treatment to remove it while still on the pill and then come off it after - others have done that - I personally wouldn't as you wouldn't be able to tell if your symptoms have improved - you need a before and after. So I would come off the pill have it treated (lap for excision) then if you feel you need to; go back on it later. Having a lap to remove it means they can check for other things and take biopsies, it also provides a new starting point, kind of like a clean slate to see where you are and how you feel, so you can better track when things get bad. Some women find they only have problems around certain points of their cycle, ie start of cycle, or ovulation etc, but wouldn't know that if the pill is always taken as there's no true cycle.

[Sofie679 in reply to luthien]

Thank you for replying! So I had a laparoscopy in September which confirmed what my gp had thought for the past couple of years. (I put off having the surgery because I felt like I could manage the pain) I was on the pill throughout the whole process and tbh I don’t really feel like the lap did much good. They used ablaision and found some under my ovary but none where I was having problems (my bowel) so it’s quite dissapointing and disheartening. I would definitely have the surgery again if things got bad again. But considering my endo was quite mild (in comparison to what some people go through!!) I reckon I’ll be okaaaaay off the pill.

I guess I want to see how I will feel pill free, because I know when I started the pill I felt so emotional, and tbh I’m still the same! I will cry at anything these days. I have also got a lot of anxiety since the pill/endo so I’m wondering if that wil be affected by coming off it!

It’s all a game of “what if”, and I guess the only way I will find out is if I try!

[luthien in reply to Sofie679]

Ablation just takes off the top layer and won't go into the layers below, from what my specialist mentioned. So if yours gets bad again see if you can ask about excision; they remove the endo and some tissue around it so in theory it grows back less quickly.

See if you can get checked for bowel problems, ultrasounds may help, you can do investigative stuff while on the pill so you have an idea of what's going on, docs generally don't like it though but if it helps you push for it.

I definitely prefer the pill free me, managing my endo after my op now I know my cycles is so much easier as I know when i'll get bad so can plan around it. Emotionally and mentally I'm just who I want to be, the hormones messed me up, so I know how you feel.

Just remember everyone's different to what they go through, what's okay for them, what they can cope with, how they want to treat it, how it will affect them and their life, so it's up to you what next steps to take.

Keep us updated with how you get on whatever you choose to do xx

[Sofie679 in reply to luthien]

Yeah I’ve heard of excision but I just assumed the NHS don’t do it since I’ve never heard them mention it! I’ll definitely ask about it next time!

Yeah I wanted to ask for more on the bowel problems but every time I’ve mentioned that I still get pain, they don’t seem to offer anything! I just said I might have been still recovering from the operation! Maybe I will try push for some more investigation!

Thank you for all your help! I’ll update on what I end up doing! I think I’m going to take some time off the pill and see how I go! xx

[Sofie679]

Update: I’ve been off the pill for over a month now, my cycle hasn’t came back yet, think it’s like 44 days since my first bleed (when I took my last pill and had my week off and never started taking the pill again) and I’m feeling great! Only a few times I’ve had sharp pains in my ovaries, but other than that I’ve been great! Feeling the best I’ve felt in a long time!

[Sofie679]

Okay so UPDATE!

I am BACK on the pill, but I’ll get to that in a minute.

I was off it since the start of March up until 2 weeks ago. In between that time I felt sooo good! I had so much energy, I wasn’t in much pain really! I had 2 bleeds (idk if they were proper periods) and obviously had pain with them. I would occasionally get sharp pains but they would go away in seconds so it wasn’t so bad. The second bleed tho.. OH MY GOD. It was awful. So painful, had so many large clots and just felt generally horrible. It was this that prompted me to start taking the pill again, because I knew I couldn’t do that every month

So yeah. I’m back on the pill, and after being on it for about a week I’ve noticed how I’m sooo tired all the time again :/ and I’m just so over it. Does anyone know of any non hormonal methods??