Progesterone only pill experiences

[Vickal]

So it turns out I had a TIA (mini stroke). As I'm only in my early 40's, don't drink or smoke, am not overweight and am physically fit my only risk factor is my pill. Dr has recommended I switch to a progesterone only pill as there is a lower stroke risk factor.

I agonised over going on the pill as I don't get on well with hormones but I just couldn't handle the monthly endo pain anymore. After trying several different pills which made me bleed constantly, feel nauseous and made me so moody I finally settled on one that works for me. Now I'm faced with changing it I'm pretty anxious.

Would be good to hear from fellow endo sufferers any experiences of the progesterone only pill. Thank you xx

[EndoJaz]

I’m on pop and haven’t had any side effects, it seems to help with the monthly pains. I have had hysterectomy with ovaries left in and used to get days where I couldn’t move, only have these occasionally now x

[Cockapoo-2016]

Hi there.I am so sorry hear that. For your age you should have been put on the mini pill in the firstly.

In April this Yr I went for ultrasound scan and my endometriosis is growing back after 8 months of having surgery.

I was recommended to go on the mini pill as I am 44 yrs old, I completely refused as I feel that isn't an option for me. At the moment I am seeing a nutritionist for my endometriosis who put me on a non gluten free diet and fodmap diet, B12 vitamins, Vitamin D and Natural supplements called bio pycnogenol only a nutritionist can only prescribe them.

Best wishes to you😊

[Vickal in reply to Cockapoo-2016]

Have you found the dietary changes have made much of a difference with your symptoms? x

[Cockapoo-2016 in reply to Vickal]

Making Dietary changes has helped alot with my symptoms, I am suffering with less pain, more manageable x.

[Rubybasset]

Hiya,

I am also early 40s and had pulmonary embolism diagnosed at the end of march. I haven’t seen a haematologist yet so don’t know if the combined pill and/or covid were a factor but both are a possibility. I was put on desogestrel (progesterone only pill) and it works really well for me. The first period was horrendously heavy and lasted 3 weeks, which I was warned about due to taking anticoagulants, but I had no pain and no tummy upset, which would be my norm. Second period was two months later and basically spotting for a week or so with a few very minimal cramps but again no upset tummy. Haven’t had my third yet but hoping it will be the same if I get it at all.

I think you won’t really know how it will be for you until you try, and different brands could affect you differently as well. For me I wish they’d suggested this years ago instead of constantly trying to push the coil on me as I’ve heard too many negative experiences to be interested in that. It could be another option for you to discuss though, one thing that is clear on here is that different things work for different people.

[Vickal in reply to Rubybasset]

Thanks, that's really interesting. The coil was suggested and has been offered previously but I don't like the permanence of it. If you don't get on with a medication you can stop but worse case scenario can be pretty bad with a coil and I wouldn't want to have to wait to have it removed.

[Kittye]

I am 45 with stage 4 endo. I was put on a POP (Cerazette) over a year ago, taking it every day with no breaks, and it really changed my life. No periods, and only rare episodes of pain, normally brought on by stress more than anything. It took a couple of months to get used to it. I had 'periods' the first 2 months but by the 3rd month no bleeding at all. I was moody and constantly hungry to begin with, but that settled down after a while. Overall, it works for me, because the severe pain I was getting before has totally gone. If I forget to take it one day, I will have pain the next day, so it's really important to take it every day at a regular time. Just wish I'd started taking it sooner.

[Lasa]

Hi I went on the pill again at 41 for some reason I'm getting hot flushes that sometimes can lead to headaches all bloods are fine and FSH is normal but I have to put up with it plus side periods are light or absent but pms symptoms pain remain another method was prostap iv declined as it's the injection from hell 🤣

[Circe3]

I wondered if the POP is working for you?

I have recently been put on Cerazette progesterone only pill and I have had 3 periods in the space of 34 days with barely a break. They are not heavy but last 7-8 days in contrast to the 3 day before going on it.

I have also had eye pain, breast pain in addition to the pelvic pain I normally have.

I feel the repeated periods in such a short time are making the Endo worse.

A nutritionist said I should have had my hormones tested before being put on it. As it’s not as one size fits all.

I have also been told Bioindentical hormones are better. I am assuming this one is not.

Not sure I want to continue to see if it finally stops my periods all together.

[Vickal in reply to Circe3]

I found it a nightmare 😒 I gave it about eight weeks and bled the whole time barring maybe four or five days. Not just spotting but period bleeding. I was so miserable. I read that this could last three or four months before it possibly settles but I couldn't stand it so came off it all together. So I thought I'd try going horemone free as it has been several years since I've been off the pill and I've had a second laparoscopy during that time. It's been about three months so far and my pain is managable periods not too bad. I now the endo could get worse but at the moment I'm happy with no horemones. I feel a bit better emotionally too and even have a little sex drive back! I won't go back on the pill unless I really have to.

[Circe3 in reply to Vickal]

Bless you, that sounds worse than mine, you have made the right decision. My periods are not heavy but still painful so my Endo lesions maybe progesterone resistant.

I also getting to the 8th week end of this month, if it continues this way I will consider coming off.

I recommend a book called Heal Endo…great advise on diet, pain management and surgery. Things I am implementing are all ready working.

I hope you continue to be pain free!

[Myl0]

Worked really well for me, only my specialist has taken me off them now because the drug was new & I was only supposed to take it for 1 year (it was nearly 3, I'd moved abroad & kept taking them) I was on VISANNE a new drug developed for Endo but I believe with the same concept of pop. After 3 months no period, no pain. But weight gain, spotty chin & no sex drive !!!