progesterone only pill

[Jem33]

Hi all, I was wondering if anyone had any success with progesterone only mini pill after surgery for stage 4 endo?

I have stage 4 advanced endo, bilateral endometriomas, adenomyosis(although this wasn’t mentioned after my 2nd MRI only on 1st as having features of it) frozen pelvis with ovaries stuck to back of uterus and all that stuck to bowel.

I’ve been referred to a BSGE specialist but would like to be prepared when I go with what I want as a treatment option. I’m reluctant for a hysterectomy/oopherectomy so was thinking of asking about surgery to unstick everything and excision of cysts and endo cells and then go on the mini pill.

What are other’s experiences of this?

Any thoughts welcome good and bad.

Thanks

[Starry1977]

my insides are very similar to yours however I had a lap last year to remove most of it. I still have an obliterated POD and endo near the sigmoid colon. I’ve tried 2 mini pills in the last 12 months. They did make my periods lighter however they were longer. I didn’t find my pain any different really ( luckily I don’t have severe pain more discomfort) but I found my anxiety was worse. I’ve just stopped the 2nd pill I tried over a week ago and I’m not trying anymore. I feel my adhesions cause most of my symptoms now. I went on the pill pretty quickly after surgery so I’ve not really seen how I am now without hormones after the surgery if that makes sense.

[Jem33 in reply to Starry1977]

thanks for sharing your experience with me, I actually think we have spoken before seen we are similar.

I’m really just trying to decide what might be the best decision for me going forward. I’m not keen on a hysterectomy if it can be avoided but I will have to wait and see what the BSGE centre thinks. I have an essay of questions for them so hopefully I will come to a conclusion that will suit my body.

I’m currently on decapeptyl and tibilone and I still have severe pelvic pain so I think the damage in there is what is causing the pain still. So maybe my symptoms will improve with surgery whatever that will entail.

Wishing you all the best.

[Rasmol]

I have taken the mini pill for many years, it comes with some side effects (acne and low libido) but overall it stopped my endo from progressing and I had many years witouth pain thanks to this pill. It was only when I made the mistake to stop taking it (I didn’t know I had endo at the time) that my endo came back stronger and I’m currently waiting for laparoscopy. My impression is that the mini pill stops o decrease endo growth but won’t fix any current problems or existing pain. Good luck 🤞🏻

[Jem33 in reply to Rasmol]

thank you for replying and sharing your experience. I feel it’s definitely an option for me to consider so hopefully the BSGE will hear me out and advise me well with what the chances are of it working for me

Hope you get some relief from your lap

[Efka]

Hi, I'm new here so was just browsing to get a feel - I just wanted to share that I have been on Utrogestan (bio-identical/human identical) progesterone for the last couple of years for endo pain. I take 200mg daily at night and it has worked wonders for me. It hasn't stopped the progression of my disease but I do not have anywhere near the pain level or issues I used to have. Many (most?!) mini pills (nor coil) do *not* contain progesterone but progestin. Best of luck.