Can you have endo even with being on the pill for 12 years?

[missm87]

Hi, I've just had my results back to see if I'm gluten intolerant or have inflammatory bowel as the dr was convinced it was my bowel and not my womb that was giving me the problems. However I do have IBS and have it for 9 + years but she wanted to make sure as this blood test wasn't around when I was first diagnosed. Anyway the results are back and negative so that's another thing they can rule out. However on the phone to me she said my symptoms sound exactly like endo but I should be ok because I'm on the pill and have been for a long time.

Is this right, you can't have endo whilst on the pill? I've also tried all the things of taking it back to back I feel it makes no difference.

She is writing to gynecology and seeing what they recommend doing with me. So frustrating.

[Elwood]

I was on the pill for 10 years, in that time my endo grew to horrendous proportions, the pill masked the symptoms but did not stop the disease, I realised something was really wrong when I could stand straight as everything was stuck together with adhesions. The pill will allow some people to get on with a normal life but it doesn't always stem the growth of the disease. Everyone is different but for me it wasn't the answer.

Glad your GP is speaking to gynae but they probably should have just referred you.

Good luck xx

[missm87 in reply to Elwood]

Hi,

I know I wish she would just refer me it would be so much easier.When you say masked the symptoms what do you mean?

I feel as if every period I have is getting progressively worse. They are so bad I manipulate the pill so the worst few days are over the weekend and I don't miss work.

[Shehulk]

My experience is similar to Elwood, I was on the pill for over 15 years and I had little symptoms, once I stopped taking it it my symptoms started worsening very rapidly. The pill can mask your symptoms, as in reduce the amount of symptoms that you will experience but it does not mean that it will stop the progress of the disease, only a year after I stopped the pill I had surgery and I had endo everywhere, the surgeon said that my endo had been growing for years so it was definitely getting worst while I was on the pill. Please insist on a referral , ideally to a specialised endo centre if you have one nearby. Good luck x

[KA410]

I was on the pill for 14 years until I had my children and I have had (and still do have) a mirena coil since having my children, four and half years ago. Despite this I had a laparoscopy in December and was diagnosed with endometriosis which is now being treated with GnRH analogue. Being on the pill or having mirena slows progress of endometriosis and masks symptoms but does not prevent it.

[JellyKat]

Btw, blood tests can show if you're having an autoimmune reaction to gluten (I.e. Coeliac) but they can't show if you're gluten sensitive/intolerant instead (completely different things), in case that helps any?

I had horrendous periods when younger, got worse when I had a copper coil (passing out at uni), so went on mycrogynon for around ten years, but it was in that last year of being on the pill (since being treated for dodgy cervix cells, funnily enough) that I started to get endo symptoms, came off it (thinking it was the pill causing the symptoms - duh! - and trying for a baby) for three months. But as my pain is worst mid-cycle, it seemed pointless to be off the pill when we couldn't even try for a baby, so went back on but it seems as though being off it has somehow fed the beast inside me and even running pill packs back-to-back, I'm still in agony.

So looking back, I had symptoms when younger and the pill staved them off for best part of a decade, but then it stopped working for me.