Hormonal birth control from a young age. Did it mask endometriosis?

[Mountainliving]

I received my medical history file from the Netherlands (where I was born) yesterday. It notes:

12 yrs old: patient repeatedly visits the doctor for painful periods, high dose of diclofenac prescribed.

13 yrs old: patient compains that painkillers don't help at all, combined birth control pill prescribed.

16 yrs old: patient faints and taken to hospital with severe abdominal and pelvic pain, back pain, nausea, throwing up. Patient explains that she has not taken the birth control pill for 2 weeks and started to menstruate yesterday. Never taken a break from the pill before.

Needless to say I never took a break from the pill again after that experience. Periods after that were nasty but not extreme, until I ran out of birth control pills when moving to Norway (and struggling to get into the health system for a while). That is when the timeline of issues started (dyspareunia, bowel pain/bleeding, nausea, ...) and haven't stopped, even though I'm back on the pill now.

Has anyone else been on the pill since early teens? I wonder, can it mask/slow down endometriosis??

I've recently joined this forum and have found so much support after floating around in isolation for ages, thank you all! I am not diagnosed. After learning about endometriosis since last Sunday, I think I may have it and am awaiting a laparoscopy.

[Crazycatladyjones]

Same I was on pill from young age and always stuggled with periods pains in left side often at drs hosptials ultrasounds the lot. Always fobbed off with IBS I then changed to the implant which then litrally stopped periods for 12 years as I just got it renewed everytime still stuggled with pains in pelvis but again ultrasounds showed nothing and was told IBs

I then got the inplant out to hopelly try to concieve and everything kickied off badddddd style. Saw a GP who was wonderful thankfully and suspected endometriosis and refered me straight away, she said that the inplant had masked it all that time as hormones can do she said its a classic case of a woman having all kinds of problems now after being on any type of hormone treatments from a young age x

I have my lap in October

🤞

[Mountainliving in reply to Crazycatladyjones]

Wow, such a similar story! What baffles me is that all that time, the endo may have been getting worse? So it's masked, but sort of set free to increase in severity?!

I am on the waiting list but should get a date for the lap within 10 days, knowing the hospital it could be next year. I'd love to know how yours went later on in October, wishing you luck 💫💛

[Crazycatladyjones in reply to Mountainliving]

Its shocking as its very familiar with all women get given pill or something to ease symtoms but they dont investigate why you have those symtoms! Womens health is shocking! I only lasted 6 months and had to get the implant back in as I cudnt handle the pain however it stopped bleeding again but my pains havent died down at all and feels worse and worse each month.Its took 18mths since my referall to see gyne and get my lap apt its such a shame i looked at private but it just wasnt possible to affford it

Really cant wait to find out whats going on inside but this is just the begining!

Will keep u updated take care xxxxx

[Bondi64]

Hi there!Having just been diagnosed with stage 4 at 38, ive been on the pill since i was 19 so for me id say it masked it, as only in the past year have i felt pain or symptoms that made me want to investigate it further

[Mountainliving in reply to Bondi64]

Hi Bondi64! Sorry to hear about your diagnosis, and at the same time I'm glad that you have clarity on the pain you have been experiencing.

It means a lot to me to hear that you have also just recently started to feel pain that prompted further investigation! A couple of the specialists that have been 'helping' me for the past year have said that I don't have endometriosis, because I would have been in more pain during my periods. It made me doubt myself, as though I don't have enough period pain to investigate further.

I'm thinking the pill must have a lot to do with regulating it, but at some point the symptoms take over.

[Bondi64 in reply to Mountainliving]

My friend also had stage 4 and she had zero pain- only until she wanted to try for a baby did she know. Doctors were dumbfounded she had no pain . Every women is different and its sad we have to push for diagnosis over and over again

[Mountainliving in reply to Bondi64]

Wholly agree. We are too often not asked the right questions or taken seriously enough, while it can actually be meaningful to catch it early on. 😕

[Alienor]

Asked your gp to be referred to an endometriosis specialist. Only a laparoscopy can confirm a diagnosis. Yes the pill can cover problems but we’re not experts and as said only a laparoscopy can confirm such a diagnosis. Put pressure on your GP, get the referral asap as waiting time in UK to see specialist can be quite long. Best of luck!

[Mountainliving in reply to Alienor]

Absolutely, I am on the waiting list for a lap. In the meantime just trying to get a little wiser about what relates and what doesn't. Thanks for your reply, likewise!!

[Alienor in reply to Mountainliving]

Hopefully you will not wait too long and you’ll have a good consultant. You’re right to get yourself prepared. I’d even suggest you to have notes with you for your first appointment. I was lucky I had a great endo specialist but I’ve seen some other consultants for other things who were not that interested and undermining what I was saying.

[Avourneen]

Yes, there is someone on here who will not like me saying this and will say I'm wrong but the pill definitley masks endo. It's given to stop the bleeding which it does , but it doesn't stop the spread of endo at all.

[PBGV24]

I relate! I stated with painful and heavy periods when I was 15. Put on the pill but didn’t help and at 17 was referred to Gynae. They said it was something I’d “grow out of” and then I was out in the Depo injection. Been on that for 8 years but now I’m experiencing pelvic pain and other endo symptoms. Just been referred again to Gynae and waiting an appointment. I’m not letting them fob me off this time I want a reason.

[Mountainliving in reply to PBGV24]

Very relatable! Hope you have a good appointment with a gynae who listens x

[HortC11]

Hi. I used to get a lot of pain up until I started taking the pill. Docs fobbed me off back then saying bad periods were one of those things and said the other pains I was feeling were probably in my head! Anyway, it didn’t bother me too much for 12 years, I was on the pill all that time. Stopped taking it 3 years ago to try & have a baby & problems started coming back. Was diagnosed with severe endo last year, consultant told me I would have had it right back in my teens. It’s awful because so many women can have it & not even know & all that time the disease is gradually getting worse.

Make sure you keep pushing to get answers, don’t let anyone fob you off x

[Mountainliving in reply to HortC11]

Thanks for your reply! This is exactly why I posted this question. It feels like you are being 'treated' for an illness you don't know you have and can't decide or understand anything about. Hope you receive the right treatment for your endo x