To stop taking my pill?

[Selena55]

I’m afraid this is not as interesting as the title might make it seem, but I really need some input here.

About a year ago, I was diagnosed with endometriosis in my c section scar (I’ve had two sections, last one was 4 years ago). I had a golfball sized lump and a lot of pain and tenderness during my period. Had MRIs etc, that was the outcome. This was during covid and I was so impressed that they still tested to the point that it was diagnosed. But it all seemed to go a bit flat at that point.

I got a call out of the blue from the doctor who explained that I had this endometriosis and that they wanted to put me on the contraceptive pill to “depress my cycle”. They never told me anything else. I should have asked but they kind of caught me on the back foot. I said to the doctor at the time I don’t do well with hormonal contraceptives, it plays havoc with my moods etc, but acknowledged I hadn’t taken any for a long time. Doctor said give it 6 months or so and see how it goes.

Went in to see prescribing nurse who did blood pressure etc. and I raised again my concerns about the pill. She reiterated what the doctor had said. Give it six months it’ll probably settle down. She couldn’t answer any of my questions about my endometriosis, but did say that this is often how it is treated.

Sooo I’ve been on the pill about 9 months now. My mental health is in the gutter. I am demotivated, miserable and numb and angry and antisocial. I put this down at least in part to the pill, because I feel like everything started to go haywire in my head around the time I started taking it.

I came off it for a few days a couple of months back and the endo pain and resultant bleeding were ridiculous so I went back on.

I essentially feel that I have just replaced one problem with another. I know I need to speak to the doctor but my local surgery is awful and they make it so hard to speak to anyone. Especially as this is not an emergency. I also have a bit of anxiety around the whole doctor thing (which is new). I am also unclear as to how bad the endo is, and what my options are.

Can I just stop taking it for the time being to see if my MH improves?

Oo tough one. When you got diagnosed are you under gynae or just through your doctors? I have endo and was told the same rubbish about the pill and other contraception. I lasted 3 months and then came off and refused to go back in. Doctors are absolutely rubbish with women’s issues it’s gynaecology you need to see. Strangely enough all my symptoms went after being off all contraception. I have slightly heavy periods but that’s it.

I'm massively biased because I stopped taking it years ago and I wouldn't go back on unless I really had to. I would try to get an appointment with a female GP, take in some notes about your mental health and your experience and push to have it taken more seriously. Putting you on hormonal contraception for the rest of your pre menopausal life doesn't seem like a great solution, especially as you're struggling with it. You deserve to be listened to and taken seriously.

I was on the pill for endometriosis for 12 years (with surgical management in between). Similar to you, my mental health was awful. I decided that pain management for one week a month was easier to deal with than constant mental hideousness.

It took about 9 months for my cycles to regulate: now I have good ones and bad ones, not all awful. Using menstrual cups has been a game changer in terms of pain for me (seriously cuts it by about 50%), otherwise pain/heat pads and co-codamol for the terrible days.

Also, push for a laparoscopy if you haven't had one already, these are the only thing that give me total relief!

Have you been able to have excision of the endo?

They usually recommend mirena for endo - it's been really good for mine.

I would.

Oh wow thank you. Is this a common thing, the mental health side of the pill? I’ve been worried they won’t take me seriously.

No I’m not under gynae or anything they’ve just given me the pill and left me to it.

Hi Selena,

I had the exact same, lump in c-section scar pain during period they told me it was most likely endo

I got an appointment with a female GP who referred me to the gynaecologist and they booked me in to have it surgically removed, they cut along the same c-section scar and I was laid up in bed for a few days, got it sent of to confirm it wasn’t anything sinister and it came back as endo and I haven’t had a problem since.

I’m the same as you I can’t take contraception as it messes me up to much I think they offered it to me but I refused. I would push a referral to gynaecologist for the surgical removal if I were you.

Good luck!

Poor mental health is absolutely linked to the pill, I came across an article on it by chance once and that's when I stopped taking mine to see if it made a difference - the change was huge. I suppose it isn't advertised by the NHS for obvious reasons, but do google and do some reading.

Also - and this is one of the things that is so awful about Endo - you really will have to push and push to see a gynecologist, it takes the average woman 6.5 yrs to be properly diagnosed and properly treated which is just bloody awful. But if you nag them enough, you'll get there!