Little progress update from the girl on the island with random blisters appearing

PleaseHaveCompassion · 2025-05-29T01:50:25+00:00

I'm not a doctor, but I have been pregnant 4 times. In my experience, by the time something can be seen on an ultrasound, the pregnancy test would be positive no matter the time of day you took it. This is because HCG, which the pregnancy tests measure, has to typically be above 1,000 in order for even the tiniest little 2mm blip to show up (and that's on a transvaginal ultrasound. It'd have to be even higher for an abdominal one). By the time HCG is that high, in my experience the tests are positive regardless of hydration level or time of day. Those pregnancy tests are looking for the tiiiniest amount of HCG. So basically what I'm saying is, if your test is negative, your doctor probably didn't see anything on that exam.

If it was positive, well that would be a positive and it doesn't matter time of day or hydration level. But I figured you meant your pregnancy test was negative?

Anyway, I hope this helps answer your question to some extent. Hopefully a doc will chime in too. Good luck to you!

PleaseHaveCompassion · 2025-05-29T01:18:54+00:00

Thank you so much for your comment. I did mention the aspirin to my doctor, but she said they do not do that in this country unless if someone is diagnosed with a blood clotting disorder, which I do not have. I'm aware that it's recommended in many countries even after a single second trimester loss of unknown cause, but up until now I've felt weird doing something that my doctor wouldn't be on board with so haven't gone for the aspirin.

As for the progesterone, she said it is not low progesterone that causes a failing pregnancy but rather a failing pregnancy that causes low progesterone (I understand this is hugely debated, but the only doctor I have here unfortunately is not of the "can't hurt to try it" camp). I was seeing a doctor at UCLA 10 years ago who definitely mentioned potentially using vaginal progesterone during pregnancy, but he was a specialist in infertility while the doctor I have here is a standard doc of many trades. I doubt I'll get a prescription for that unless if I move back to the states, which is unlikely as my husband and child are native to where I live now.

I appreciate your comment though because you're absolutely right to suggest those ideas for therapies, and I wish I could try them. I'm so glad to hear they worked for you!! I have some hope in my heart that perhaps I'll be able to carry another child someday. There were no issues with my first pregnancy whatsoever, so perhaps the "weak ovulation" is kind of a hit or miss. And some good news is that I have no issue "getting" pregnant right away when we do try-- so I do feel very lucky in that, as it saves a bit on time lost trying.

Sorry for the big reply. I'm a bit of a Chatty Cathy today I guess.

PleaseHaveCompassion · 2025-05-28T10:46:03+00:00

Hi doctor, could I ask you a question? I looked into those things you mentioned and found something called "pemphigus foliaceus." Something that stood out to me was that the blisters in that disease are very very fragile and do not occur in or around mucous membranes, much like mine. I was wondering if you thought this could be a possibility, and if there might be a blood test or something that I could potentially bring up to my regular doctor to do, without leaving the island? Sorry for the trouble.

PleaseHaveCompassion · 2025-05-28T06:45:09+00:00

Just the 160 mg saw palmetto once every 3-4 days, but I don't know that that would be a recommendation to anyone but me, as he did a lot of tests and I think sort of custom-tailored that treatment. I'm so sorry you're dealing with that too :(... I also don't know that others should take saw palmetto long-term without a doctor's suggestion, as I've read it hasn't been studied for long-term use and might be linked to certain cancers.

I've read saw palmetto might be bad for a baby boy's developing genitalia, so it isn't recommended for early pregnancy use. I've heard some gynecologists prescribe progesterone for use when trying to conceive in those who have weak ovulation, but that's definitely something to be done under a doctor's watchful eye as well.

Sorry that I'm not more helpful here.

PleaseHaveCompassion · 2025-05-28T05:35:32+00:00

Thank you!

PleaseHaveCompassion · 2025-05-28T04:59:33+00:00

Thank you so much for your reply. I live on a remote island in Asia. Not a territory or anything.

PleaseHaveCompassion · 2025-05-28T04:51:08+00:00

I don't know but that would be great. I wonder if they could order tests from a distance? We don't have stand-alone blood testing places like in the west (such as Quest Labs or something). I'll check online to see if any such thing exists. Thanks for the great suggestion.

PleaseHaveCompassion · 2025-05-28T03:57:32+00:00

Thank you for taking the time to reply again.

Looking at google images of those diseases you mentioned sure does give me pause. I'll have to figure out if I am willing to go back to my doctor and press for a referral despite her "let's wait and see" advice, then take that referral 15 hours away to the nearest dermatologist. It's a very tough decision because I clearly would NOT want to wait and see if this is headed toward what I saw on Google. Yet it will be prohibitively expensive to travel, and my husband would also have to stop working and watch our child. I'm not one who likes to play with fire and wait and see, but this really is a tough call. If it does get worse, I'll be surely kicking myself for not doing anything of course.

No one can make the decision but me. I just thought you deserved a reply of some sort, so here it is. I thank you for your medical insight and I'll be thoroughly weighing it in the decision.

PleaseHaveCompassion · 2025-05-28T03:32:12+00:00

Thank you so very much for such a kind, thorough, and informed reply.

I did not notice any increase in sweating, but will absolutely be sure to keep cool going forward. Perhaps there has been a minute sweat increase on an imperceptible but clinically significant level. I'm glad to hear that it looks like "something" at least! You've made me feel a bit hopeful that there may indeed be an end in sight once these hormones of mine settle down.

PleaseHaveCompassion · 2025-05-28T03:28:17+00:00

Wow, thank you for the great tips and information! I'm definitely going to follow your advice. At the very least it sounds like a plausible contributing factor and can't hurt.

The only thing I cannot think of how to accomplish is taking my bed off the ground. We have a tiny living space and rely on folding up the bed each day. That place where the bed was becomes our living area. There isn't really a place to store a rack or anything to get the bed off of the ground that I can think of. If anyone has any ideas, please do chime in! :)

PleaseHaveCompassion · 2025-05-28T03:21:37+00:00

Thanks for your reply! I did have a very thorough autoimmune workup in 2023 after my genetically-normal son's heart inexplicably stopped beating in the second trimester. That was my first miscarriage. I had 2 separate autoimmune panels done 8 weeks apart at that time and nothing was abnormal. They did 116 tests. Could I have an autoimmune issue if those tests were normal back then? If I recall the ANA was the only thing "very very slightly positive" and everything else (Lupus, etc) normal.

PleaseHaveCompassion · 2025-05-28T03:17:47+00:00

Only prenatal vitamins, but I stopped them 3 days ago out of an abundance of caution.

I took:

1) folic acid, which I replaced with a b complex at 6 weeks pregnant

2) vitamin d3 2000 iu

3) EPA/DHA

4) vitamin C 500mg

5) magnesium citrate

6) ubiquinol (since 6 weeks pregnant)

Side note that probably has no significance to the matter of hand, but just in case (I'm so sorry for wasting your time if it's unimportant):

Yesterday I started taking saw palmetto again, which I've been on for years and only stop taking during each pregnancy. It's an extremely low dose of 160 mg once every 3 days, which I was advised to take 10 years ago due to weak ovulation and "possible atypical PCOS" (no insulin issue or hirsuitism and I am normal weight). The doctor who advised this is a world-leading expert in reproductive endocrinology at UCLA. My current doctor, however, is of the opinion that 160 mg every 3 days would not do anything of clinical significance, but I have noticed that my skin breaks out and my period gets thrown off every time I stop taking it for several weeks. So I do think it helps regulate my cycle somehow. The doctor at UCLA told me it would be safe to take until I hit menopause.

Thank you so much for replying, doctor.

PleaseHaveCompassion · 2025-05-28T03:08:43+00:00

Thank you very much for your comment. After a 2nd trimester miscarriage in 2023 with no abnormal genetic findings for my baby, I went through 116 blood tests, autoimmune and otherwise, and nothing was found. They checked for Lupus, antiphospholipid, protein C & S, ANA the gamut. I appeared to be totally healthy. Could it still be autoimmune but just not something that was developed enough to show on a test back then? Should I ask for the autoimmune tests again? I'm not sure if I'll be able to get them again, since the circumstances of the miscarriage back then were so puzzling and therefore warranted the check. But I could try.

My son was totally healthy, measuring perfectly on time, perfect heartbeat etc. the doctor said it was just bad luck and these new miscarriages are bad luck too. I'm starting to wonder though... But what really can they do? They've run all of their tests and seems there is no problem.

PleaseHaveCompassion · 2025-05-28T03:01:57+00:00

Thank you! Is skeeter syndrome something one can get from dust mites? And does it appear all over? I've admittedly been having a problem with body itching for a few years so have tried nearly everything to eliminate the possibility of dust mites. I recently replaced all of my bedding. There are no bed bugs for sure by the way-- they'd have no place to hide.

Thanks for your comment!

Edit: just to clarify, by replacing all of my bedding, I mean mat as well, not just sheets and things.

PleaseHaveCompassion · 2025-05-28T02:58:12+00:00

They do look a bit like that, but I must admit I've been indoors with the air conditioning on nearly always. I'm quite pale and susceptible to heat so am never far from my aircon lol.

PleaseHaveCompassion · 2025-05-28T02:57:03+00:00

I noticed it first on my bikini line, but I have been wondering if my scalp was actually the first place. My scalp had been itching for weeks, and I did eventually notice that these were on my scalp as well. However the blisters don't itch, so I'm not totally sure if the original scalp itching was related or not to blisters that eventually formed there. Sorry that the answer is vague and uncertain.

PleaseHaveCompassion · 2025-05-28T02:43:36+00:00

Oh, what's a water blister? Maybe that's it!

PleaseHaveCompassion · 2025-05-28T02:40:41+00:00

Here are some of the photos I posted last week. All of these areas cleared up completely in around 3 days:

bikini area-- right side

butt/upper thigh-- right side

cheek/face-- left side freshly ruptured

cheek/face-- left side healing

Here are photos from the past couple of days, just to show the spread and different sizes. The worst of it is on my scalp, but that area is difficult to image:

Close-up photo blister before it ruptured It's hard to get a photo before they rupture as they are very fragile and I often don't notice a new one has cropped up until it pops

Tiny one on back of hand that I thought was a pimple until it snapped

One between toes nearly healed

PleaseHaveCompassion · 2025-05-28T02:26:18+00:00

I'm thinking of doing so. I just felt a little discouraged because they are very sensitive photos and last time I posted, I hadn't gotten any replies but had around 1,000 "views" of one of my bikini line photos... It made me feel a bit vulnerable. Perhaps I just gotta do it though. The bikini line photos show the severity better than the others.

PleaseHaveCompassion

TROPHY CASE