Hi everyone.
I want to tell my story… I am very scared and sad. Sorry if there will be grammar errors, I’m using a translator to be able to communicate. I am a young Italian woman of 35 years who suffers from PCOS (polycystic ovary) I used, for hair loss, a lotion that contained a percentage of saw palmetto (a cosmetic lotion of Biokap, not medical) on the advice of the pharmacist. He told me it was very good and had no side effects. For a few years (2) I had no problem, but my hair kept falling and getting thinner and thinner, so I decided to stop using lotion. A few days later… I had what you call the “crash”: muscle aches, headaches, burning, tinnitus, dry eyes, vaginal dryness, anxiety… I could not understand.
Through research I discover the world of SPF. TOTAL PANIC.
I’ve read many stories of men ruined by Finasteride, Propecia, some of them killed themselves and I cried for them.
Some Italian guys who suffer from this syndrome told me to wait, that it takes time before the body can recover, to have faith and be calm. But it’s so hard, I’ve developed depression and loss of appetite, and I cry almost every day.
It’s been two months and I still haven’t recovered, but I’m not as bad as I was at the beginning. I read here that those who crash never recover.
It’s horrible, it’s hell.
What worries me most is the head, I don’t think I have brain fog, but it’s something I can’t explain, maybe it’s pressure, I don’t know. I just hope it works out, I want to live again and be the girl I used to be.
God bless you all.
S.
Ciao e benvenuto nel nostro forum. Mi dispiace molto sentire la tua storia, ma purtroppo gli uomini non sono gli unici che possono sperimentare la PFS.
Molti pazienti sperimentano miglioramenti nel tempo, a vari livelli. Tu puoi essere uno dei fortunati, ma molti non recuperano la loro salute precedente.
La ricerca è il modo migliore di procedere e la nostra associazione ha organizzato alcuni fantastici ricercatori per lavorare su questo problema: pfsnetwork.org/donate.
Qui troverai altri pazienti che ti daranno sostegno e comprensione. Vi incoraggio a controllare la nostra nuova guida per l’utente che contiene molte risorse utili: New user? START HERE Per favore, contattaci se hai bisogno di parlare.
Abbi cura di te.
Thank you so much for responding to my message. I’m devastated. I read that some men recover, though not the majority. I cling to hope. I think I’ll have to give up the dream of becoming a mom if I don’t heal from this disease. It’s the biggest pain for me.
Ciao
I’m so sorry you’re going through this
The most important thing you can do at this time is keep your stress levels calm as possible and give yourself time to heal
You even said you are not as bad as the beginning
Everybody has a different time frame
I wish I had more for you
But you are not alone
thank you so much for your words. I don’t know if all the symptoms will go away, I just need to be able to lead a “normal” life, something that allows me to live despite everything. The guys I talk to told me that there are different recovery times, that maybe everything is not lost. I am so afraid, you are all men, the treatments may not be suitable for me who am a woman. I was contacted by a guy who after a year has healed, I was very happy for him, I hope to heal too.
I was so stupid.
I’m very sorry to hear you’re experiencing this. The initial crash period is hysteric and impossible to know how to deal with, just know that the worst is likely over with.
I can only echo what others have said: try to look after yourself and don’t do anything drastic. You’re still in the early period of the condition and there is much room for improvement. You’ll likely see many accounts of people taking various drugs and supplements in a vain attempt to improve themselves; ignore these as you risk making matters worse. Just try to let your body heal.
My crash lasted two days, then I got back on my feet and I was able to do things. But I’m still sick. They told me not to read the forums and to be as calm as possible. I didn’t know that the palmetto was so poisonous, I would never take it. And the pharmacist didn’t even know anything. I pray every day. Thanks for your comment.
Yes definitely different healing times and different level of recoveries. There’s no way to know unfortunately
I had a beyond awful crash Jan 2020
I couldn’t move, think, really do anything
I felt nothing
It took about 30 days to start feeling 60-70%
Maybe 5-6 months to feel 90%
Don’t lose hope
Pleas contact pfs foundation https://www.pfsfoundation.org/contact/
Most of the people think it is manly issue only. Please tell them your story there.
I wanted to update to give some hope to others too. I’m three months off the palmetto. Many physical pains have totally disappeared, although I still have problems with vaginal dryness (and menstruation) eye problems and ringing in my ears, but in general my body has improved a lot. Sides remain at the neurological level that worry me a lot, I hope to be better in the coming months.
I sleep well without using anything (7-8 hours)
I’m being followed by a doctor who knows SPF.
I’m sad to think I could avoid this, but I try to be brave.
Hi Lady86, anche io sono Italiano faccio parte della comunità sulla PSSD (Post-SSRI sexual dynsfuction). I have also taken Finasteride and Minoxidil in the past, but apparently with no side effects, I only took them for two weeks. I crashed with only 7 drops of Citalopram which caused me PSSD, the symptoms are the same as PFS. My crash happened 9 years ago, I Have high and low, now I can train again with weights.
Come già ti hanno detto i ragazzi della comunity italiana post-finasteride ci vuole diverso tempo anche un arco tempo sostanzialmente lungo, perchè il proprio corpo ritrovi la sua omeostasi. Per un periodo è meglio non pasticciare se possibile con altri farmaci o integratori strani, spero che tu possa avere un recupero completo.
Ciao.
ciao Luca, ti rispondo in italiano…mi spiace moltissimo, per quanto il dispiacere di una perfetta sconosciuta possa non cambiare la situazione. Solo nove gocce ti hanno ridotto così, incredibile. Personalmente come ho già scritto non ho più dolore fisico, sono i problemi di testa il mio cruccio principale. Spero tanto di riuscire a guarire (magari con qualche strascico che mi consenta comunque di fare una vita normale) non sto pasticciando con nulla, seguo solo una buona alimentazione e ogni tanto sport. Certo che certa roba è davvero una gran merda. Un abbraccio virtuale!
Updating.
I did a follow-up visit again from the endocrinologist who knows and treats SPF. The blood tests I did reveal alterations from the polycystic ovary and nothing else, but they don’t justify my discomfort. I enclose here the prescribed exams with their results:
TSH 14810 (0.35-4.94) very high
FT3 3.02 (1.58-3.81)
FT4 0.99 (0.70-1.48)
Ab Antityroglobulin 1.90 (-4.11)
Ab Anti Thyroid Peroxidase 1.06 (-5.61)
Estradiol 36,0
FSH 4,55
LH 4,19
Prolactin 14, 84 (earlier was higher, lowered)
Testosterone 1.46
17OH-progesterone 0,90
ACTH 69,00 (10-90)
Cortisol 935 (am 266-720 p.m 50-350)
Androstenedione 380 (114-283)
DEAS 617.6 (61.2-511.7)
I have been prescribed Chirofert and Berberine (berberol) but I’m afraid I’m taking them because of a worsening. I’m about to have a visit with a gynecologist for the sexual part. I know that most (if not all of you in this forum) are men, but does anyone have values similar to mine? I thank anyone who wants to respond.
Is this a typo? Never seen such a high reading before.
What did the endo say about that? With such a high value surely something is up with your thyroid?
No mistake, it is the value reported in the analysis. According to him there is no need to worry. But I’d better go to another specialist, maybe get a different opinion.
Yeah your free T3/T4 are in range, but there’s no way it’s okay when your TSH is that high.
Something is fishy, he should at least re-test you to rule out that the lab screwed up and if it comes back that high again they need to investigate why.
If he won’t do that find yourself another doc.
Can’t comment much on your other values as I’m not a doc and I certainly don’t know much about women with PCOS.
A woman I spoke with years ago, who had PFS symptoms after being injected with a drug similar to Lupron, mentioned consistently high levels of Androstenedione in her blood tests. This hormone appears to be rarely tested among either men, or members of this forum.
DHEAS being above range is commonly reported here.
PFS being more than a simple hormone imbalance means these may hold little relevance beyond being a sign of abnormal hormone metabolism.
As Cbrandel mentioned, the drastically-high TSH could possibly be a faulty result and it is good that you intend on addressing this further. Typos can also occur in the lab. A family member of mine had a similarly high prolactin value resulting from a pituitary tumor that was easily treatable. Look for a second or third opinion in the event this comes back high again and your endo refuses to take action. Results many-fold over the reference range shouldn’t be attributed to “normal variation.”
My DHEAS is always high and I took Accutane and Trazodone. Don’t know which of the two caused my “PFS”. It would be interesting to know if PSSD suffers also have these hormones high.
Hope you’re doing well and I’m very glad you’re sleeping at least…there was a time I couldn’t. That’s very difficult to deal with
I too also know too well about dining in the ears but thank God it has quieted so much over the last few years. I should be considering myself lucky just based on that one. Mine was truly bad at one point and pray to God it never gets to that again
Time seems to be the common healer around here
But, where I’ve healed in some places I’ve gotten worse in others
Please feel free to message me anytime!
From one 86 to another lol