Luteal phase intense cramping pain

Hello

So relieved to feel I am not alone. I have been having this pain several years now. Pain on the center but mostly right side. Pain would start like a clockwork on Day 15 of cycle and would last for 7-8 days. Worst at night, possibly because lying down seems to increase it. On these days, I would have to visit the washroom several times a day, always felt like trapped gas. At first, I did not make the connection to my menstrual cycle and thought it was a stomach upset, some allergic foods etc etc. It took me several years to figure out it was linked to menstrual cycle. Once I understood that, I went to a Gyno, who referred me to a gastro, who ordered a CT. The CT came out normal, although it showed a small fibroid, but that could not have contributed to this pain.
The gastro doc asked to take a urine culture test, at this point, I was disheartened that no one really understands my problem and never returned back to her. My gyno said uterus removal could solve this, for which i was not ready for it either since I am still in my thirties.

Long things short, I still have no solution. I do know what doesnt help.
OTC pain relievers dont help.
Medicines that are anti spasmodic doesnt help either (meftal spas)

Just ploughing through those 7 days every month stoically for now.

Peculiar things I noticed:
I intentionally went for CT during those painful 7 days . During my CT, I had to empty my bowels completely using a colon cleanse. Following that, I was pain free for a day. After I started eating again, pain came back. So it is definitely gastro related.
I was having a sedentary lifestyle and when I started heavy exercising, it sped up my cycle. So my luteal phase was hardly for 3 days, so that particular month I was painfree. So I was dreaming if I kept up my heavy exercise, that would solve the problem. But no! my body had gotten used to the exercise by next month and had a normal cycle and pain as usual. So this is definitely some whacky hormones at play too.

I am documenting my story here in the hope that someone might find a cure and I might benefit too. And also to let women in a similar condition know that they are not alone.

I have had similar pain to what is being described since the end of 2020. I had surgery that confirmed and removed endometriosis, but the pain has not gone away. It starts 12 days before my period and lasts for 11 days. Especially bad at night. I will feel fine for hours then be in excruciating pain for 20 minutes or so. I take ibuprofen and Tylenol, which dulls the pain a little bit. I also use heat. I've worked with dietitians and physical therapists and nothing has helped significantly.

On my last visit to the doctor, they said that "my body is extra sensitive to hormonal changes" and did not offer any more testing, just symptom management. I have an appointment with a Napro doctor coming up, so I am hoping they will do more testing.

The process of trying to figure this out has been incredibly discouraging. I am thankful to find the people who have similar symptoms, even if we don't have answers yet.

Hi. I wanted to write an update to my condition. It turns out I have an allergy to progesterone which is causing this horrible cramping during the luteal phase. I finally saw a reproductive endocrinologist (after much advocacy on my end) who is the first doctor who said they have seen this before and it can be quite severe in some women. Every other doctor I saw seemed totally perplexed by my symptoms. Unfortunately, the treatment options for this kind of sensitivity / allergy is limited as often to suppress ovulation and therefore stop the surge of progesterone during the luteal phase you need to take a birth control that ironically contains progesterone like substances, but there are some options and others may benefit from seeing a reproductive endocrinologist so I wanted to post. Hope others are also getting help in their treatment journey!

Thank you so much for writing this out and the systems/solutions you have been trying. I have had very similar issues for the last 8 years and I have felt so alone in trying to find help/relief.

Thank you for your post. Did you ever get a resolution to your pain? I know this is an older post, but considering I have the exact pain you described and it is causing my mental health to deteriorate, I figured I would check to see if you are any closer to a diagnosis? My pain starts every 28 days, and a few days into the luteal phase of my cycle. The pain lasts until about a day into my period. I have extreme pelvic pain that radiates to my back and down my leg. The pain comes in waves that last anywhere between 15-45 minutes. Itis so extreme that it wakes me up several times a night. During the worst part of the monthly episode, I become a zombie because of the lack of sleep. Aside from the pelvic pain that seems to be gyno related, I also have unexplainable digestive issues during the episodes. I get so bloated that I look pregnant for about 10 days a month. I was given birth control to see if it would help the symptoms, but it actually brought on my symptoms, even though I was outside of the normal window.
It has been 4 years and I am tetering on the edge of what I can mentally handle. The pain just gets worse and worse and every dr dismisses me because my test results do not show any real issues. I have had every standard GI and/gynecological test done at least twice and I am no closer to finding any answers.
With all of that said (sorry so long), have you had any luck figuring out what is causing your pain?

Hello,

I had twins and then when I got pregnant with another singleton baby, the ultrasound technician told me that I had varicose veins from the previous pregnancy.
I experience dull inflammation type aches in my pelvis around when ovulation happens. I think it's from the rise estrogen.
I have had an ultrasound of my pelvis but no abnormalities were found.
I'm not sure what is causing the pain but I only have ever experienced it since having hormonal health issues.

I know this post and your reply is a couple of years old, but I had to respond when I read your story and the others. In fact, I burst into tears.
I have been experiencing almost identical symptoms for nearly 7 years now. Every month directly after ovulation, I experience these uterine contractions (that’s what I call them, as they’re worse than just “cramps” and I can feel a bearing down. They are triggered predominantly by lying down and similarly to you, they wake me up hourly, almost like clockwork, at night for approx 7 nights. They’re also triggered by sometimes standing up after having sat down for an extended period, and orgasms.
Doctors dismissed me over and over and finally I pushed for a laparoscopy, they found “minor endo” and ablated it, and absolutely nothing changed. I am told the only course of action would be hormonal birth control (which I stopped taking a couple of years ago for various reasons and do not wish to repeat the experience)- obviously that is not treating the cause, only covering up the symptoms.
Whatever this is, it has devastated my life.

I cannot express how shocked I am to find this thread after years of googling. Would love an update if you have one and are up to sharing. Otherwise, I wish you and everyone on this thread well.
We need more research, more support, and more doctors listening.

@kellystreet hi! I wasn’t sure if this reply was targeted at my comment, but if so your experience sounds really similar to my own. In particular that taking birth control (which I assume contained progesterone) actually triggered your symptoms. This is exactly what happened to me. Plus the digestive issues can be related to progesterone which can cause constipation, bloating, etc.

As for a solution, I have been going a bit off script with the oversight of a doctor. In particular a reproductive endocrinologist said this treatment plan, while unorthodox, sounded very safe and viable. His other option was to put me into early menopause which I didn’t want to try. Ok so for the treatment I learned that mifepristone (which is highly regulated in the US for political reasons and almost impossible to get prescribed for this purpose although it is very safe according to many clinical trials) is a progesterone antagonist. It is also in trials as a birth control in Europe. I have been taking mifepristone at around 50 mg every week (been trialing different dose regimens) and haven’t had cramps in almost three months! I am getting my bloodwork done every 3 months to check for any liver toxicity (highly unlikely given how low this dose is) and uterine ultrasounds every 6 months (to ensure the reduction in progesterone isn’t causing unopposed estrogen which can lead to endometrial hyperplasia and possibly then cancer).

Interestingly this medication is also prescribed for people with cushings disease at much higher doses but ultimately is very expensive and normally prescribed through a specialty pharmacy. So while I did find a solution it’s not an easy one only because the meds are hard to get but not because the treatment is actually difficult or invasive in any way. I hope this helps in some way!