Endometriosis and the pill?

[yellowpancake]

Hello, I am new here! I went for my first appointment with the gynaecologist today and to keep a long story short he said it can't be endometriosis if I am experiencing pain whilst on the pill because the pill would stop it. I was put on the pill about 5 years ago to help with irregular periods, strong pains and heavy periods. For the first 3 years or so it really helped, the pain was almost non existent and my flow was light. Then the pain came back worse than ever and my flow got heavy again. I was wondering if anybody with endometriosis had the same experience? I can't help but feel like i'm being ignored.

[Hidden]

Hi, I’ve had terrible luck when it has come to treating my endo with pills. It’s certainly not out of the ordinary to have pain whilst on the pill, however my doctor listened when I told her about the pain I was in and she changed the pill I was on be it a higher dose of hormones or a lower dose. Hope this was helpful and I hope you get the answers you are looking for, some men doctors don’t quite understand I don’t think.

[yellowpancake in reply to Hidden]

Thank you for your response! I felt like we was going around in circles during the appointment, he wasn't explaining much at all and kept saying things like "you are just one of those people who have painful periods" and that it's normal for sex to hurt sometimes. I'm going to speak to my GP and ask for a referral to a different gynaecologist. When he asked what pill I was on he hadn't heard of it and had to google it, I'm on rigevidon which I thought was really common? Last year I was diagnosed with PCOS and he ruled that out despite running no tests so I left with less answers than I went in with which is really frustrating but i'm going to keep pushing it 😁

[OllieF]

I was told this just yesterday, and it has never come up before! In my case I think it might have been influenced by the fact that I have had endometriosis excised but think some might have been missed because of the pain I’m experiencing. I’ve still been referred to at least pain management and other people have advised me to do the next steps offered and keep going back to insist on the pain. It’s so frustrating but ultimately you know what you are experiencing and I’m holding onto that!

[yellowpancake in reply to OllieF]

It's really frustrating! My GP referred me to both gyno and gastro at the same time. I got through to gastro first and initially gyno kept pushing my referral back because the consultant thinks its not a gyno issue so to be honest I think he decided before I got there that it couldn't possibly be endometriosis. He told me that painful sex, heavy periods and painful periods isn't a gyno problem if you are on the pill. I really don't understand how those things aren't a gyno issue but here we are. I need to have an endoscopy and a colonoscopy under the gastro clinic soon, I'd be surprised if anything comes from that. I asked if they'll see me again if those results come back clear and he said "yes but just because it isn't gastro doesn't mean its gyno" then what is it then? We can surprisingly tell the difference between bowel/stomach related pains and period related pains. 🤦‍♀️

[Rubyjune25]

I had pain whilst I was on the combined pill, meaning I had one bleed a month. But since I changed to the pill where you have no periods at all it’s been much better. Unfortunately it’s very much trial and error

[yellowpancake in reply to Rubyjune25]

He did mention the mini pill but told me to follow my GPs advice first on taking the combined pill through for 3 months then having the break. I'm in an annoying situation at the moment with the pill, my cortisol levels are really high and my hormone levels are all over the place. I'm seeing an endocrinologist for it (yup! Endocrinologist, gyno and gastro all at the same time!) and I suspect he might tell me to come off it to see if my cortisol comes down. Coming off the pill really worries me, my thought process is if the pain is bad now when its supposed to help surely it will be worse off? On the combined pill, did you experience pain when you wasn't on your period? Thank you! 😁

[21Franky]

I had my appointment with my gynaecologist over the phone this week, she tried to discourage me from having a Lapo as it’s surgery and general anaesthetic (I know) and that the treatment they would give me is the pill which I’m already on so she wouldn’t advise it for me... she’d suggest the mirena coil, pill or mini pill! She was so unhelpful and as usual passed off with the treatment being the pill!

[yellowpancake in reply to 21Franky]

That's so frustrating for you! I understand where they are coming from discouraging a lapo but completely dismissing patients and throwing them on the pill without proper examinations is really annoying. I was thrown on the pill because I was 'too young' for it to be anything and its normal pain. It really annoys me when they normalise severe period pains, it makes a lot of people ignore really serious symptoms! My gynaecologist said that a lapo is pointless because 'even then it might not detect anything it isn't a for sure way to detect endometriosis'. I really hope you find a solution, its such a long and mentally draining process but nobody should be expected to deal with pain like that

[CGrif]

Wow that is just so wrong. I was on the pill for 5 years, then mirena coil for 10. In that time I had endometriosis removed and I was told the same thing. Turned out my pain was because my left ovary was stuck to my back wall with endometriosis. Although it should stop it being severe it 100 does not stop it completely so it is still very likely to be endometriosis or as I have discovered Adenomyosis.EndometriosisUK has a whole load of information and were really helpful when I was trying to get a diagnosis. Hope this helps

[yellowpancake in reply to CGrif]

Thank you! The pill was a god send for a while but now I get bad pains again and heavy periods. I recently starting using mooncups and that made me realise how much I was losing, it made me feel really uneasy and its obvious to me that the pill isn't helping anymore. I've had too many incidents to count where I had such bad pains that my mum wanted me to go to the hospital thinking it was my appendix, I refused because I knew it wasn't. I think I regret that now, if I went maybe my gyno would take me seriously. I think the solution for me will be to get to the bottom of my bowel issues first so the gyno can't shrug my symptoms off as being that and find a new gyno. It really annoys me that these things get shrugged off as a gastro problem as if you can't have both and like we can't tell the difference between the pains.

[CaptainJemima]

I am sorry to say your gynaecologist is not correct. I have endometriosis and I have had pain whilst on some pills. Not all pills are the same, and not everyone reacts the same to a pill. A blanket statement like that is not helpful. I was on one combined pill for years and was fine and then my periods got very heavy and painful all of a sudden, then I switched to another and had the same thing happen. I find that the progestogen only pill works for me as it stops my periods and therefore I have no pain! Like I say, it's a case by case basis, you have to find what works for you.

[yellowpancake in reply to CaptainJemima]

Thank you! To be honest the entire appointment was a mess, i'm going to ask if I can be referred to a different gyno because i'm not comfortable going back to him. I'm currently under endocrinology too so I'm going to speak to them about the best thing to do with the pill. The combined pill 100% isn't working for me, I'm in pain a lot and my hormone levels are all over the place.

[CaptainJemima in reply to yellowpancake]

I hope you get the help you need, it is no fun at all to be going in circles. I would think seeing a different gynaecologist would be a good shout too. Good luck x

[BrightLights88]

yes I was on the pill because I didnt want surgery at the time as I needed to research about it because my questions were not being answered by the doctors, within 14months of being on the pill the flare up was getting worse then I had the surgery and the pain stopped and continued the pill. But now after 2 years I'm having to tske 2 dose of pill now as they said stop the period or get a coil in but I don't want that

[yellowpancake in reply to BrightLights88]

They're so quick to put people on the pill thinking its a magic solution to the problem. I understand it works for some people but it isn't for everybody and it's really frustrating being put on it then ignored when you try to tell them it isn't working. I'm glad you got your surgery and it helped! 😁

[BrightLights88 in reply to yellowpancake]

Sadly it helped for 1year and now the endo has come back.

[ouchmyendo]

Hey! I'm new here too! After my first laparoscopy I was put on the pill and have been taking it constantly for 6 years without a break so I didn't have periods and over the past couple of months I've been in constant pain. So definitely possible to still have pain when on the pill. Sending lots of love!

[yellowpancake in reply to ouchmyendo]

I've only recently been advised to take it without a break for 3 months after being on it for around 5 years, I wish they told me it was safe to do so earlier it would have saved a lot of hassle 🤣 Sending you lots of love too! I felt really silly and like I was being dramatic after the appointment but after hearing peoples experiences I feel better about myself and more determined not to let it get ignored. 😁

[BrightLights88 in reply to yellowpancake]

I was on microgynon without breaks and end up having a episode where I felt a huge gush on my underwear then saw that my womb lining discharged out of my uterus. It was horrific at first because I didnt know what it was till I researched and then was told to take it with me to a&e, but no one knew what it was till I saw a gynae. It was a decidual cast, all I can say is when you Google it you will see what I mean. It looked like a flesh but closer inspection shows you it's a sack. But this happened when I was the pill 3months straight then break then 3month straight. I am now on noriday which is taken every day.

[Meworange in reply to BrightLights88]

Omg this has happened to me aswel are u off ur pills now, is this the comb pill? I was on neotheronte

[BrightLights88 in reply to Meworange]

I was on microgynon, when the decidual cast discharged out of me. But I was moved over to noriday as my migraines were getting worse. When I started noriday I did have a 2month long period and they put me on neotheronte which didn't help stop the period and I was worried as I was on my last pack of pads due to the locked down last year and panic buying I couldn't find pads. So I went back on to noriday and now periods went back to normal. I am currently been told not to have periods anymore, so I have to take two dose of noriday. To help me with saving my eggs.

[Meworange]

Hi thanks for sharing your experience I'm in similar position aswel,I been told.to go.o the combined pills but I'm worried aswel I dont want it to effect my fertility in anyway :// I really want to.consive agin in the future.

[Chloelouise92]

Hey, yeah I was told this as well. I was put on the pill literally 2 years after I started my periods to help my skin so haven’t really experienced ‘proper periods as such’. I was on it for 13 years and never really had trouble with my periods but started having pain which resulted in constant daily pain. They told me I couldn’t have Endo if I was on the pill. And at one point I was even told that my pain was being caused by the pill. It wasn’t and it was deep endo.

As hard as it is you’ve just got to keep going back until somebody will listen. Ask to see somebody different. I think if I’ve learnt anything over the last few years as experienced as some health specialists are the only person who truly knows your body is yourself. If you feel like something isn’t right chances are it isn’t. I hope you get further forward with finding answers x