Luteal phase intense cramping pain

@misss hello! I’m so sorry you are going through the same thing. It’s horrible. Yes! Mifepristone has completely cured me of any cramping. It feels like a miracle. It’s been about 11 months now since I have been cramp free. I take 50 mg (cut a 200mg pill into quarters myself) every 5 days. I have had absolutely no side effects and do routine TVUs and blood work for liver toxicity. It will probably be tough to get but I cannot recommend trying it more as I believe it is the safest and least disruptive treatment if you have a progesterone allergy. I will also say I think it’s important to get the FDA approved pill as I tried some manufactured in India and those didn’t work as well for me.

@lacycat thank you so much for taking the time to respond. I am in Australia so I'm actually not sure whether they will provide this as an option for me. I am heading to the GP tomorrow to get a referral to see an endocrinologist. Did you have any tests to confirm that it was definitely progesterone that was the issue or any tests to prove you were allergic to progesterone? I initially was put on a progesterone only pill and that made things worse in that the pain was occurring all through the month but not as intense but still worse as I'd rather only get the pain for a set period! The progesterone only pill also made me bleed and spot all the time. I gave it 4 months and stopped (gyno gave me the progesterone only pill because i assumed it was ovulation which was causing the pain but the pain starts few days after). Before this i was on a combined pill for 5 years (for birth control) and didn't have any symptoms. I came off the pill 3 years ago and started having these symptoms however fell pregnant so they went away! But after i had my baby and my periods started the pain started again every month without fail. I'm scared to eat as eating brings on the pain but at night it's every other hour or so. Can i ask if you had an MRI as well? My next step after seeing a gyno was to have a laparoscopy to see if there is any endometriosis but my DIE was negative and my gyno actually doesn't believe my symptoms relate to endometriosis as the symptoms stop a few days before my period! Also after reading this forum i don't feel like a laparoscopy would help as some people who have had the surgery and had some lesions removed still experience pain every month.

@misss of course! I am very happy to help. So I did have an MRI. They found a tiny fibroid but that wasn’t causing the pain. I didn’t get a test for a progesterone allergy but based on my own evidence collection it seemed like the likely conclusion for me. Some thoughts on your situation: pregnancy spikes progesterone so that is interesting to me that the symptoms went away with pregnancy (although the body suppresses a lot of immune responses in pregnancy so it could be they counteracted each other), it could be that your condition only started after going on and then stopping combined birth control (mine randomly started in 2021, also I have a progesterone IUD but it is very light on hormones and localized). Regardless make sure you see a reproductive endocrinologist, I saw a normal endocrinologist at first and while she was lovely she had no idea about reproductive hormone control. Additionally, you can normally get the mifepristone pill as part of a “just in case” abortion care kit here in the states. Not sure about Australia but it probably is easier to get there. If so, I would recommend trying to get like 2 pills and trying it out for two months and see if it works. I think the worst that will happen is your cramps either don’t go away (then you know this probably isn’t a progesterone allergy) or they do and now you have to figure out how to get the pill long term. Definitely in my opinion (I’m a medical researcher/epidemiologist but not a doctor) less risky than getting a laparoscopic surgery that might not find anything. But of course consult with a doctor first! Just be aware this is not a normal treatment plan so some doctors might be skeptical. If so, you might want to ask them to tell you based on the scientific evidence what their actual concerns are for your health. I had a few doctors tell me that taking mifepristone would be bad and when I asked why and told them I had read all the research on using it low dose they had no answers for me. Oh also there are other drugs that are progesterone antagonists but based on my research mifepristone is the safest. Other ones have show to have liver toxicity in studies so that is why I went with mifepristone.

@lacycat thank you, yes i have a small fibroid as well but it cant be that that's causing the pain. Yes when i fell pregnant i had zero pain i guess because i wasn't having a period and the cycle stopped but that is a good point you raise re progesterone in pregnancy. I'm glad you found a solution to your pain! Does the mifepristone affect your cycle in any other way, like do you still get a normal period regularly? You have been very helpful thank you, and it's great to talk to someone who understand the pain. I struggle to function on these days and i don't want to leave home. I am almost 41 so was wondering if it will stop with menopause. Lots of questions. Thanks again!

@misss I get it and it's nice to talk to someone else too and share what helped me. There is no information out there about this! It was so debilitating when I had the cramps I was worried I wouldn't be able to hold down a full time job (was a PhD student at the time) because I couldn't function normally for half the month. I am so sorry you are in a similar spot but hope you find relief soon. The mifepristone literally has zero side effects for me and I am normally a pretty sensitive person to medications. I get the TVU every 6 months and blood work every 3 months and everything has come back normal. My period is regular but very light because of the IUD. If it is progesterone in your case then it would definitely stop when you hit menopause but of course menopause will come with a whole host of other health issues as I am told.

@misss of course! I am very happy to help. So I did have an MRI. They found a tiny fibroid but that wasn’t causing the pain. I didn’t get a test for a progesterone allergy but based on my own evidence collection it seemed like the likely conclusion for me. Some thoughts on your situation: pregnancy spikes progesterone so that is interesting to me that the symptoms went away with pregnancy (although the body suppresses a lot of immune responses in pregnancy so it could be they counteracted each other), it could be that your condition only started after going on and then stopping combined birth control (mine randomly started in 2021, also I have a progesterone IUD but it is very light on hormones and localized). Regardless make sure you see a reproductive endocrinologist, I saw a normal endocrinologist at first and while she was lovely she had no idea about reproductive hormone control. Additionally, you can normally get the mifepristone pill as part of a “just in case” abortion care kit here in the states. Not sure about Australia but it probably is easier to get there. If so, I would recommend trying to get like 2 pills and trying it out for two months and see if it works. I think the worst that will happen is your cramps either don’t go away (then you know this probably isn’t a progesterone allergy) or they do and now you have to figure out how to get the pill long term. Definitely in my opinion (I’m a medical researcher/epidemiologist but not a doctor) less risky than getting a laparoscopic surgery that might not find anything. But of course consult with a doctor first! Just be aware this is not a normal treatment plan so some doctors might be skeptical. If so, you might want to ask them to tell you based on the scientific evidence what their actual concerns are for your health. I had a few doctors tell me that taking mifepristone would be bad and when I asked why and told them I had read all the research on using it low dose they had no answers for me. Oh also there are other drugs that are progesterone antagonists but based on my research mifepristone is the safest. Other ones have show to have liver toxicity in studies so that is why I went with mifepristone.

@lacycat

Let me join the others in saying THANK YOU for your posts! I have also dealt with the same pain with same timing for 10+ years and have been dismissed by many doctors with a shrug. I can't believe I've found this thread with others with similar experiences.

I am reading your comments to my husband (a veterinarian) and cannot wait to try mifepristone. We both have decent repro knowledge so were wondering if taking the low dose mifepristone every 5 days is necessary or would 2 doses right around ovulation (maybe right before ovulation and then 5 days later?) be sufficient to prevent the progesterone from the CL to have this negative affect? (If an allergy is in fact my issue as well).

It seems you've done a ton of research so would love to hear if the 5mg is still working and timing details.

Again, thanks so much for your willingness to chat with others about what you've found!