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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Faye_Craig1
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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
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
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!!!
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.
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.
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
You are usually just given the mini pill to stop your periods, the idea is no periods less pain. But I have read that this can mask the pain while the endo grows unnoticed. So long term it can be worse. Most specilaists believe that a high dose of progeterone should really slow the growth of endo but a few believe the exact opposite as Kelli at the endof this thread says. Just one top American doctor is convinced that progesterone can make it grow but I've asked other specialists here and they majority (some of Britains top endo scientists rather than doctors) say no. But I think the argument that it does make it grow made a lot of sense to me. I guess it is like some much else about endo not enough research has been done to provide a really clear answer.
Experts have different theories as to what causes endo, what makes it grow and the best way to treat it. What we need is a lot more research so we can actually get the bottom of these really important questions and find more effective treatments.
Write to your MP and dmand that more funding is given to research in this field. It's crazy so many millions of women have enod if better treatments were available the pharmaceutical companies could make billions it would be a win win. I'm sure if men had this condition then it would have been thoroughly researched years ago.
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