Coming Off The Pill: Managing Endometriosis

Before taking the decision to come off the pill I did read a lot of other people’s stories and medical pages on what to expect. I realised that everybody will have a different experience but it put my mind at ease a little. While I did find a huge selection of material on this, I couldn’t find a lot on how it affected sufferers of endometriosis. My experience of coming off the pill while having endometriosis won’t be hugely different from someone without for the most part. The main difference being finding alternative, none hormone based alternatives to manage my symptoms which I expect will become worse.

After running a poll on twitter to see whether there was any interest in this post, I was pleased to see there was. I was keen to document this as I personally feel like it would be good for others like myself with endometriosis. I definitely feel that there is a place for it, so I give you my experience.

Background Information

Let me give a bit of a backstory here to follow-up with my reasons for coming off the pill and how I plan to manage my endometriosis without it.

Since being 16/17 I had been on the pill, Mercilon, a very low-dose contraceptive pill which I have been on ever since day 1. I took is as normal running each pack for 28 days and having a 7 day break, before starting the cycle over. After being diagnosed with endometriosis and having surgery at 22 I was advised to run my packs of mercilon back to back without any breaks. I did this for around 2 years when my symptoms became so bad I was back and forth to the hospital again.

I was then given injections every three months which medically induced menopause to halt my reproductive system entirely, I did this for over a year and a half.  At that point due to side effects of taking long-term I had to stop and reverted back to the pill. My symptoms had all but gone with the exception of the odd minor niggle.

I’ve been fortunate to remain relatively pain-free until earlier this year when my body started to have sporadic bleeds without warning. I’d find myself doubled up with crippling pain and suddenly my symptoms were worse than ever. This is partly why I began thinking about coming off the pill. Another was because although I couldn’t really recall how I was before starting it. I felt it had a lot to answer for with my moods being so erratic and they really felt as though they were spiralling some days.

Why I Decided To Stop The Pill 

Finally and probably one of the main reasons women tend to come off is to allow their bodies to return to normality so that they can start a family. In my life and relationship we have decided to do this and what will be will be. I’m more than aware of what might lay ahead given that I’m 30 and I’ve suffered with endometriosis since I was around 16.

Our bodies are incredible and it never fails to amaze me what they can do. I have every faith in mine that it will do what it needs to in its own time, and when the time is right hopefully a little bun will follow. So that’s a bit of history, and that’s where we’re at now.

I stopped the pill at the beginning of September to make it easier to track moving forward. I have an app which I am going to record when I bleed to allow me to notice a more regulated pattern emerging. I’m hoping that with Mercilon being such a low dose, and my body already having bleeds of its own accord that returning to normal won’t take too long.

Week 1

So it was as early as the following day that I began getting quite bad cramp and along came the withdrawal bleed. It was quite light and nothing like I had expected, the cramp began to pass after around 4 days and at that point it was no more than minor niggles. The biggest change I noticed which took me by surprise as it was almost straight away was my moods. I don’t want to make myself out to be some kind of mini Satan or anything but my moods were erratic at best. I could be laughing and happy one hour, and miserable or moody the next. There was never any rhyme nor reason to it, they would be all over the place.

This had been the case for so long and I was honestly questioning my mental health and whether I might actually have something wrong with me. It was becoming a big problem and after reading up on the pill in great length it suddenly hit me that it could all be down my tiny white pill I would take each morning.

Since stopping I noticed a change in my mood almost instantly, I was feeling a lot more laid back, something which was until that point as rare to me as a blue moon! I felt a lot happier and calmer in general, I was definitely more levelled out and my mood was too. I hadn’t anticipated such a quick change but I’ll take it!

Week 2

Moving into week 2 I had no cramps or discomfort at all until around day 10 of being off the pill. I started to notice cramps, but not like the ones you get when you bleed. They were considerably milder and more of a dull sort of ache. They progressed into what became quite uncomfortable pains at time, particularly in one specific area in the right side of my abdomen. This specific place had always been a painful area when I would get endometriosis pains. They were so bad at times I would be curled up in a ball hugging a hot water bottle. Before stopping the pill they had started playing up a lot more so I was expecting to suffer to be honest.

One thing I noticed was a shift in my moods and I felt very erratic and all over the place. I’m hoping to see it level out and remain settled because being a devil woman is no fun.

Week 3 & 4

As I went into my third week I didn’t notice a great deal of anything really. The odd minor niggle but aside from that nothing to report. Much as week 3, for the most part I experienced very little worth mentioning. As week 4 was coming to a close I did notice an increase in cramps, and endometriosis pains more so. I’m hoping that this means my body is adjusting to its own cycle and the pains are my body preparing for its first proper period in around 13 years!

Week 5

By this point I was experiencing very typical abdominal pains you expect before a period. On the Tuesday 2/10 of this week I got up as normal to get ready for work when out of nowhere I got the most horrendous pain in my abdomen I’ve ever experienced. It was so excruciating that they made me sick, and pass out, all of the colour drained from me. I couldn’t move for the pain and my partner took me to hospital. It was there that the staff discovered I have an ovarian cyst, most likely an endometrial cyst. I am currently waiting to have an ultrasound in November to investigate further.

At the end of week 5 my period finally arrived. It caught me a little off guard as I had expected to have cramps before hand warning me of its arrival. I experience a lot of discomfort over the first couple of days and to my surprise all cramp and pains eased a lot, until it was almost at the end of its cycle. My pains returned and would often see my doubled over and clutched at my abdomen.

Up to now I feel that my body is a bit all over the place, trying to find a routine. I’m hoping it won’t take too long and in the mean time hot water bottles and heat patches are my new BFF! Hot baths work a treat too.

I have a post I wrote on my experience of endometriosis and being diagnosed, you can find it here.