Endometriosis UK
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Can endo return on progesterone mini pill?

Hey,

So I got diagnosed with Endo in 2014 after years of painful periods, bad IBS (mainly constipation with bloating and nausea) and painful sex etc. I also got diagnosed with pelvic floor dysfunction just before, and given where my endo was (pouch of douglas, bladder, uterus ligaments) it is believed that it was all connected.

I was put on the progesterone only mini pill just before my laparoscopy and I haven't had a period since, not even spotting, so this has solved my painful periods and severe pelvic pain, but I have still been suffering with everything else and am still reliant on suppositories to open my bowels despite having physio.

In the last few months to a year though things have got much worse. While I still suffer with opening my bowels the suppositories don't always work anymore and I've been passing softer stools as well as mucus and some blood (sorry to be graphic). I have also been having a horrific flank pain in my left side. I have been back to the doc, bloods were fine, 1 urine sample came back with raised white blood cells but rest were fine, ultrasound showed bowel wall thickening but sigmoidoscopy was fine, 1 biopsy showed inflammatory markers but rest were fine so they said it wasn't conclusive to a kidney problem nor Crohn's or colitis. I then had an MRI which showed I had a lesion on my left adrenal gland.

I am seeing an echonologist this week about the lesion but just wondered if anyone else has had a similar experience to me? My gynae said it was impossible for the endo to return with no periods and on the pill I am on, but I am concerned about these symptoms? X

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Hello, i am sorry to hear you are having pains and problems, at least no periods is one less. I believe more severe stages of endo can make there own oestrogen so fuel themselves. Also some food mimicl oestrogen amd can make symptoms worse. As everyone is different playing around with your diet to see if certain foods at certain points in the cycle affect or help. X

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I’m no expert, but surely if the mini pill was a cure for endo we’d all be on it? I have very similar problems and would do mostly anything for symptoms to stop- but from my research even a hysterectomy won’t always end symptoms. Are you under a BSGE centre?

I do agree with SEB88 some foods make my symptoms worse

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Hey thanks and no I've not been to a BSGE centre! What does it stand for and where can I look for one? x

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bsge.org.uk/centre/

It stands for British society of gynae endoscopy (I think)- I finally have an appointment with 1 next month

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Great thanks so much x

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I love this response! My specialist also said to me you won’t be getting endo pain as you are on high dose progesterone it must be something else! I also thought “ wow of that was the cure then why isn’t everyone else on it !? Cancel the surgery!!”.... of course it can come back on the minipill!!! And it does!!!

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Hello Faye. My name is Kelli Mikkelson. My understanding is that endo parallels breast cancer in the fact that it grows from hormones. Either estrogen or progesterone or both. Mine is both. I know this because my endo dr tested receptors. I had a complete hysterectomy November 2016. I was on Biote I received estrogen and testosterone. My body was very sensitive to the hormones and I was exhausted with body aches. I just felt miserable. I was seen by another dr who gave me progesterone to take in the evening. Biote hormones are inserted in your lower hip and are in the shape of small pellets. It lasts 3 months. Therefore, it must run its course. The progesterone was in pill form to take at night. I felt better and had more energy, better sleep. However, after 3-4 weeks I started having a period. That’s right. No ovaries and no uterus. If I am bleeding from my vagina it would indicate that there was endometrial tissue in that area that was not excised during hysterectomy. I was examined for possibly not healing even though this was 4 months post hysterectomy. Then, I started bleeding from sores in my nose. Before my hysterectomy I would often have nasal sores and bleed from them when I was on my period. I also coughed up blood. I already knew the disease has spread to my right lower lung. It was the reason I had the hysterectomy. I stopped the progesterone and all the bleeding stopped. I have not had anymore bleeding. I have now stopped all hormones bc I don’t know what to take. Mri showed a hemangioma on C3 of cervical spine. I have had an onset of inflammation in neck, head, eyes... lots of pressure.

You don’t have to have a uterus to have endometriosis. Endometriosis grows by hormones. At least that’s my understanding and my experience.

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Wow you have had s tough time. You are amazing . I thought no one with endo should get oestrogen without progesterone to balance it . As theborstrogen makes the endo grow and the progesterone stabilises it. The best HRT post having ovaries removed for women with endo is meant to be Tibolone. It is a synthetic progesterone that also helps hot flushes etc but does not affect the endometrium at all. .so if you get terrible menopause symptoms give that a go. You are brave.

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When it was discovered that you had endo affecting your bladder and ligaments/POD you should have been referred to a BSGE accredited centre back in 2014. Deep rectovaginal endo is typically left sided. It's likely that you had and still have deep endo behind the uterus that can only be treated in such a centre. There are so many guidelines that GPs and consultants should be reading but apparently aren't. Have a look at section 1.4.2 of the NICE guideline that came out last year and all GPs should have read. A sigmoidoscopy will usually be clear - endo rarely infiltrates right through the bowel wall but that doesn't mean you can't have it on the other side. If you are in England tell your GP that referral to centres is direct through NHS England and not through the local CCG. Will pm you.

The origin and disease process is not known but it is generally accepted that peritoneal (the usual pelvic form) arises from retrograde menstruation. So periods could potentially cause new endo and therefore stopping periods prevent it. But a general gynaecologist is not qualified to remove endo from your ligaments and what is/was likely to be deep endo in the POD will still be there. It is a different form and as has been said can biosynthesise oestrogen within its own cells to sustain itself. In any event depending on the pill you are on your ovaries will still be working and you will still have some oestrogen circulating.

nice.org.uk/guidance/ng73/r...

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Hey thanks so much for all this it is really helpful. It is so surprising how clear these guidelines are and yet doctors are still not going by them! x

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Make sure it's not a side effect of the mini pill since I m experience constipation with it and rectum pain. Therefore I decided to stop it

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