I have endometriosis and I am currently taking the pill to try to ease recurring symptoms less than 12 months after surgery. Having read lots of scare stories about the pill and my symptoms not easing that much, I wanted some advice on whether to continue on the pill.
I am having real trouble getting my current pill on the NHS (they keep wanting to switch it to a cheaper alternative which I have tried before with horrible results) and I can’t help but think I am needlessly putting artificial chemicals and hormones into my body as I haven’t improved that much. However, I am worried if I stop taking the pill, my already bad symptoms will worsen.
Could anybody help please? Has anyone come off the pill they were using to help endo symptoms? Can anyone compare life on and off the pill with endo? I realise everybody’s experience will be different but I would just like to hear about your experiences if possible.
TIA xx
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Livinginjoggers
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Hi I was put on microgynon before surgery but sadly that didn't stop the endo growing rapidly.But eventually after surgery it helped. But then was put on noriday as I suffered bad migraine with aura.
The noriday has since helped me for 1 year, I did have a 2 slightly harsh flare up during locked down but 1 yr on coming 2yrs I havebt experienced the pain I had before surgery.
My pill is free because its classes as contraceptive so I don't have to pay for jt but the others pain reliefs I do.
I have now been told to double the pill to stop my period as they don't want me to have periods which will make any future endo grow. so far keep getting painful spots on my chin but not pimples.
Hi, in response to your blind spots, I’d suggest asking the dr for DUAC once daily cream. I’ve been on this pill for 3+ yrs and these blind spots are a bit of a nightmare. They go, only to reappear and more annoyingly even when they have gone down you can still feel the lump. The cream brings them down and stops them reappearing.
ok thanks il try that I'm currently using the Johnson Johnson one it's very effective it kills off the pain reduces it becoming a pimple.
Hi Living,Life on and off the pill, indeed.
I have endometriosis too, and have tried a variety of contraceptive approaches over the years.
What might be most helpful is to discuss with a GP/gynaecologist which ones are thought to slow the endometriosis the most. There's a handy table of hormonal treatments on the Endometriosis UK website.
I made it to my early 40s before being diagnosed with endometriosis. I suspect that might have been in part because I had contraception for many years. I've had no hormonal treatment for the past decade, but the endometriosis has gone to stage IV now.
Here's a summary of contraceptives, from my perspective:
- Combined pill. Contraindicated for women who have migraines.
- Depo provera injections. Convenient, once every 3 months. Felt a little sad and sluggish the first month.
- Mini pill. A little acne, often felt a little sad
- Implant (nexplanon). Skin over Implant along the line of the implant felt a bit numb - vaguely disconcerting
- Copper coil. No hormones, heavier periods, more cramping, more clotting. Vaguely uncomfortable.
- Mirena. Comfortable. Reduces period flow very much - also taking 1 mini pill a day to try to suppress period
For me, I'm concerned that without hormonal treatment, my endometriosis would give me a hard time. Over the past 6 months, it's become a huge problem for me, and hormonal treatment is part of my coping plan to make it to surgery.
But what happens after surgery? That's a good question. I read somewhere that surgery alone can sometimes give 5 years of relief for endo. Only 5 years? For surgery, I'd like longer, please. So, for me, I'm anticipating staying on the hormonal treatment (to try to slow endo) until menapause when endo is set to calm down.
So there is pill for endometriosis patients it was called visanne and we had to go overseas to get it.
Now it is made in the UK, called Zalkya. It is the only pill designed for us and the only one that reduced my pain symptoms by half and I have zero side effects.
It is cheap now as it is made up of a simple chemical called dienogest.
Pharmacy2u have an excellent supply now.
Please let me know if it changes your life as much as it changed mine.
I can’t say for after surgery as I’m still waiting myself but every time I’ve gone on the pill it has made mine pain and symptoms worse. This isn’t always the case but hormones always react differently, for me it was my stomach pains worse and sometimes my anxiety. For my friend when she was on it it made her panic attacks way worse and she’s was having them almost constantly although her symptoms were gone/better. Not sure how helpful this was but just thought I would mention my experience.
Hello, I was on the combined pill from the age of 13 to help with acne and later for contraception. I really didn't experience many day to day symptoms of endometriosis apart from painful sex. I finally had a laparoscopy aged 26 and got my diagnosis. I believe that being on the combined pill really helped to keep my symptoms at bay all those years, as at age 28 I came off the pill as was worried how it affected my mood (also gave me bad melasma)and instantly regretted it. Symptoms that I'd never had previous started appearing, pain during sex became noticeably worse, bleeding was more frequent. I have since had further surgery and they found the endometriosis to have grown considerably. I now have the mirena coil and things seemed to have calmed down again - they also say that hormones from the mirena coil are locally administered so there is less progesterone travelling around your body (not sure how true this is?! But helps to put my mind at ease) Personally, I won't ever risk coming off hormonal contraception again and would suggest perhaps investigating the mirena for the mentioned reasons. Hope you find what works for you soon xx
Hi I don’t currently have any contraception on my side, I’m totally free and letting my body return to its natural state , I had endo stage 4 removal surgery well over a year ago now and I tried the coil it did not work for me , the pill I would never even attempt to try , i was on the implant in my arm for many many years that was my go to and my periods could be heavier than they are now , I am now on a waiting list for an iud the hormone free type, since being off any contraceptive I have the most lightest periods literally 1 day then not much comes out after but it is fresh blood , however I still get the exhausting pains and bloating around then but I know my endo is coming back anyway regardless but , just to give you some thing to consider I have no contraception and my flow is soo light now, it not like they always say it is, do how you feel right it’s your body. Best wishes hope you get the right thing for you
Hey fellow endo warrior, I hope you're having a good day!
I have been on the pill for almost 4 years to deal with my endo (I would have gone on it sooner but it took me years to be diagnosed.) In that time, I have changed pills - something which you've probably thought about and I would definitely suggest to consider (sorry if this sounds patronising, I definitely don't mean to come across that way.)
So I started on Loestrin, which is one of the standard ones given for endo-induced painful and heavy periods (I think.) It gave me pain-free, barely there periods with no consequences for about eight months, and then I started having really low moods every day, always in the afternoon. After a while I went to my GP and switched to Gedarel, which is what I'm currently using after three years. I get more period symptoms with this, but still none compared to what we've all had with no pill. I also don't get the same spells of really low moods, or mood swings at all - but of course I know other people will have had different experiences.
I would definitely say speak to your GP - or ask for an appointment in your closest gynaecology department if you want more expert advice - to see what they say about the options for swapping pills. A lot of my female friends have switched pills before finding out whats right for them, so it's definitely not a choice of this pill which is making you feel horrific, or no pill!
I thought I would do a little update- I used this site to do a bit of research when I was making any decision around my treatment for endo and would like to help others in a similar position!
After trying a few different combined pills over the years, I decided to try a progesterone only pill (which apparently is better for getting rid of existing endo according to my gynaecologist but not 100% if that’s true). However my symptoms worsened, the pain and the bloating was unbelievable- I would bloat to the point where trousers were just impossible and even my previously flowy dresses were becoming tight. I felt like after years of being on the pill my body was becoming unrecognisable to me and I actually didn’t know what my body looked or felt like without the effects of various pills/endo and was still experiencing all the nasty symptoms of endo.
Despite this, I was nervous about coming off the pill in case symptoms got even worse and knowing that if I came off the pill and the endo grew more, I would never get back to this ‘level’ of endo without surgery.
However, a mess up at the pharmacy/doctor’s surgery led to me missing a few days of my pill, hence I started a period. I didn’t want to start taking the pill in the middle of a period so I held off, thinking I would start it once my period finished. But I felt a lot better after my period- less pain and very little bloating. I thought ‘sod it, I’m going to see how this goes without the pill’. I realise the advise is to go to your doctor before coming off the pill but it was an accident (and their cock up!) that I was off the pill to begin with.
A month after taking no pills (freedom!) and I have not looked back. I haven’t bloated, I am in a lot less pain so far and I feel like I’m getting to know what my body feels and looks like naturally. I’m happier and not confined to the sofa in pain, and I can actually wear pants that aren’t joggers!
I realise it’s a long road, I will always have endo which could take a turn at any time, but for the moment I feel good and glad that I made the decision to come off the pill.
Everyone’s body is different and will react in different ways but this is just my experience so far with my own body.
You do what feels right for you. You know your body best.
Thanks again for the support- it really amazes and humbles me how strangers will offer their own intimate experiences to help and support others going through a difficult time.
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xx
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