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High Premenopausal ROMA and HE4 and ovarian problems

Posted by sandyjr @sandyjr, Sep 8, 2020

My daughter is falling apart. She had/has a really bad Crohn’s flare going on now. She had surgery last summer for it and everything is just going wrong. The latest is that she had a special CT scan done for her Crohn’s and liver and something showed up in her uterus and in her Fallopian tube. She went to the gynecologist immediately and had the listed tests done. My information is limited. What I would like to know is if anyone with Crohn’s has had a similar experience and/or if you have had high readings on those tests without the Crohn’s and how you made out.

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bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020

Please keep us posted. This sounds so scary and serious

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Kelly Hahn, Connect Moderator | @kellyhahn1 | Sep 11, 2020

Hello @sandyjr. I read your post and wanted to reach out. Crohn's disease can do so many things. While we wait for others to join the discussion, I did find a few things that might interest you:
- Gynecologic Aspects of Crohn's Disease https://www.aafp.org/afp/2001/1115/p1725.html
- Crohn's Disease and Your Menstrual Cycle: https://www.healthline.com/health/crohns-disease/crohns-disease-and-your-menstrual-cycle
-Crohn's Disease in Women: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3804567/

You mentioned high readings in your post, can you tell us more about that? Do you know what kind of tests her provider ordered?

Looking forward to seeing more of your posts,
Kelly

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sandyjr | @sandyjr | Sep 12, 2020

Thank you for responding with this information. The HE4 was 89 and the ROMA was 2.3. The CA 125 was 5.6 which is good. I think the issue is that many doctors do not realize how Crohn’s affects the body. From the info I have read it says that these tests are not supposed to be done for diagnostic reasons and I do not understand why the gynecologist suggested them as a first step. She did send my daughter for an ultrasound and the technician told her that she saw nothing alarming. Actually the technician seemed to know about this issue being associated with Crohn’s. I wonder if there are gynecologist that specialize in Crohn’s patients. My daughter also has PSC and takes a bunch of medicine for both diseases. That also makes me wonder if the medicines could have an effect on all this. My daughter is 45 years old and I am curious if menopause could be contributing to the Crohn’s flare as well as these other symptoms. It would be interesting to know if other people are dealing with this and have similar questions or perhaps some answers. I am wondering if I should have put this topic under ovarian cancer rather than women’s health.

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 12, 2020

@sandyjr Sending positive energy your way. I am sorry for what your daughter is going through

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areiss13 | @areiss13 | Mar 23, 2023
In reply to @sandyjr "Thank you for responding with this information. The HE4 was 89 and the ROMA was 2.3...." + (show)
@sandyjr

Thank you for responding with this information. The HE4 was 89 and the ROMA was 2.3. The CA 125 was 5.6 which is good. I think the issue is that many doctors do not realize how Crohn’s affects the body. From the info I have read it says that these tests are not supposed to be done for diagnostic reasons and I do not understand why the gynecologist suggested them as a first step. She did send my daughter for an ultrasound and the technician told her that she saw nothing alarming. Actually the technician seemed to know about this issue being associated with Crohn’s. I wonder if there are gynecologist that specialize in Crohn’s patients. My daughter also has PSC and takes a bunch of medicine for both diseases. That also makes me wonder if the medicines could have an effect on all this. My daughter is 45 years old and I am curious if menopause could be contributing to the Crohn’s flare as well as these other symptoms. It would be interesting to know if other people are dealing with this and have similar questions or perhaps some answers. I am wondering if I should have put this topic under ovarian cancer rather than women’s health.

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I am 43 and going through the same thing. We can’t be the only women out here having these problems. The doctor agreed to a hysterectomy but I am at higher risk since I’ve had a bowel resectioning and have had multiple surgeries. Doctors aren’t taking my pain seriously and they keep relating it to my Crohn’s when it’s clearly not. It’s terrible cramps, pain pain in my groin and down my legs. I’m looking for a doctor who specializes in this also. Have you had any luck?

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