My 19 yo daughter was diagnosed with small duct PSC two months ago. She had missed some periods so she had a random blood test which showed elevated liver enzymes. After many scans, a biopsy and an MRCP, she got the diagnosis. We’ve seen a couple of doctors, all telling us different things (Urso good, Urso does nothing, small duct better, small duct not much different) but the one thing they all agree with is they have no idea why she now hasn’t had a period in a year. I can’t stand the thought of having her go to even more doctors to have even more tests and more fears (this diagnosis is already a lot to deal with) so I was wondering if anyone had any insight as to why she has stopped having periods. Thank you
Joki, does she have UC (ulcerative colitis) as well?
My guess her menstrual problem has nothing to do with PSC. I’ve had PSC 17 years and stay connected with other PSC patients and research. The general rule is young women with PSC are able to conceive and have healthy children. I know a woman with PSC and UC who had a healthy son before her colon was removed.
I’m very sorry you and your daughter have to cope with PSC. But, you will need to see more doctors for her gyn problem. Also please ask her doctor if they are sure she has PSC and not PBC or Autoimmune Hepatitis. Best wishes.
Shoot, I was hoping it was connected. The thought of going to even more doctors for more tests sounds horrid. But okay. And yes, for sure small duct PSC. Liver biopsy and MRCP to confirm. Thanks so much for your response.
This is the first time that I know of that a question about menstruation and PSC have come up since I’ve been on this forum. It is very concerning to say the least. I have forwarded your inquiry to my hepatologist at Duke. He’s pretty good about answering my questions, so hopefully I can get you an opinion from him soon. Thanks for reaching out to this group. I hope you will find the answer to her need soon.
PSC 2011 / Liver Transplant 2015
I just heard back from my hepatologist. Like most doctors his response is brief. I hope it helps though.
“This is commonly reported in women with liver disease – not exactly clear why – but not uncommon.”
Mark, I can’t begin to thank you enough for asking a doctor at Duke! It’s been two months since her diagnosis and it’s been nothing but doctors and specialist and liver biopsies and 4 different scans and then a colonoscopy and Endoscopy. The thought of having one more issue on top of this is upsetting, so hopefully this doctor can shed some light. This forum is such a great comfort to find others with the same condition and make sense of all the different theories and advice we’ve been getting.
I just read your second post. Ok…good. But odd no other women on this site responded saying they had the same thing. I think we will take a month break from any more doctors and digest this all. But thank you so much for asking the doctor! I’ll worry less tonight!
Hi Joki. My daughter with PSC and UC, did not get her period until she was almost 16yrs old. Her consultant told us that girls with UC would not start their periods until very late in their young years and even after that they will experience problems with that (having maybe just a few periods per year). Shortly after she started Vanco, her UC symptoms subsided and she began to menarch and since then her periods are normal.That is why I asked you if she has UC as well as small duct a PSC. From your posts I can see she has no UC? I would then go to a gyn. Best wishes.
Im 24 and was just diagnosed a month ago however ive had abnormal liver enzymes since i was 15 yet none of my doctors looked any further into it. However, ive always had abnormal periods, never on time, ive missed up to 6months of periods at one point all together. I have a baby now and ive noticed that my periods are regulating, however i also have spotting in between periods now. ive done pap smears to eliminate any other infections and so far everything is good. I got one done yesterday, will update you if they find anything abnormal, but my guess is ive experienced this due to my liver disease that i was unaware i had. Hope this helps! best wishes.
Thank you so much, Vasni, it’s nice to know there hope that one day, she will actually get a period again (I’d hate to think this disease can rob you of having children). I’m glad you were able to have a baby and I’m so grateful that you responded. Best wishes!
Has she been tested for AIH? Ulcerative Colitis and PSC, from what I know, can cause it, but from my guess, it’s probably from the liver though. Ulcerative Colitis, in my experience, has to be pretty bad to cause it. Your body needs to be in a certain state to not have a period. The only time I had it was after an IBD emergency in 2015.
But from what I heard, it’s possible if you are early stage AIH? Though I think PSC could very well be the reasoning.
Just for what it’s worth, I did a little searching for menstrual disruption and liver disease, and came up with this:
https://www.healthlinkbc.ca/health-topics/mispd. It is the BC Canada official health website. It says:
“Other diseases such as irritable bowel syndrome, tuberculosis, liver disease, and diabetes can cause missed or irregular periods, although this is rare. But if any of these diseases are present, you will usually have other symptoms besides menstrual irregularities.”
THanks for your response. Tested for all but only has small duct PSC. She just had colonoscopy and endoxscopy and no UC or and her large ducts are normal. No AIH. The only reason we even discovered psc was blood work to figure out lack of period and elevated enzymes were found (her ALP was 900! Alt and Adt also crazy high) just stared on URSO and numbers coming down (ALP now 350) but still no period.
Thanks, Bob, so kind of you to do this research. I’ve tried to dig deeper but there’s nothing on whether menstration ever comes back with liver disease. It may be linked to cirrhosis (she is just now transitioning to stage one). Maybe once her liver enzymes improve it will come back (when first diagnosed in Nov 1 her ALP was 800. With Urso her latest blood work is now 400. ALT anr AST are 50 percent better and about 80). Since she’s only 19 having a baby isn’t an issue but I hope this disease won’t rob her of being able to conceive. It’s all horrible.
I agree with Bob, but I want to add:You might want to find her an endocrinologist or just get hormones tested since hormone issues are common. (PCOS anf thyroid problems)PSC has an autoimmune aspect of it. It tends to bring more than one autoimmune disease with it or something similar. If not, most likely stress. She did just get diagnosed, right?
I’m only a bit older than her, but from experience, when you’re body is fighting like it’s doing with PSC, it can sometimes be wonky with periods. It’s more like it’s pooling resources and cutting away bits that aren’t functional or needed atm. Im not sure if that is one particular instance, but if it is it should go down. Though, that’s what my experience was like having UC, so it might be different.
Im sure her periods will come back. when i started missing periods alot my mom started giving me primrose oil to help balance my hormones and regulate my period. I would still miss periods but it started being less and less. Maybe that is something you can look into.
THanks for your input. IT makes sense. She hasn’t gone to 7 doctors in 4 months because it was a a hard diagnosis (they thought cancer because they originally found a lump (turned out to be an enlarged lymph node) so was just trying to avoid any more doctors in hopes of destressing a bit. I’ll put an endrocrinologist on the list of things to do though. Thanks so much to all who have helped. Finding forum is the most wonderful part of this whole experience! So grateful!
Primrose oil…thanks, Vasni. I’ll look into it.
I’m just wondering if by chance your daughter is underweight or runs marathons?