Groin ache, hot flushes, dry skin, I'm broken

Member Stories
#1

Hey Guys, I am new here and hope someone can help me on what I am going through. My name is Carl and I am 30 years old from the UK. About 5 years ago I started Propecia, had a hair transplant with Dr Feriduni and was enoying life. No problems at all with Propecia, I took 1 mg a day and had zero side effects, however fast forward to last October and all hell broke.

I started to notice an itch on my crown, which I thought the worst so popped a zinc pill and within minutes the itch went away. I was so happy for that day, the next day the itch came back so like before I popped another zinc pill and so on etc. However the itch came back worse, now I am on Propecia and Zinc, I went to Holland and Barrett (health food shop) and got some Saw Palmetto thinking the DHT were attacking my crown, again I took the pill and the itch went away. now I am on 3 drugs and just about coping with the itch. However things got really bad and my scalp started burning and itching all over. I started to panic and a few months in of painful scalp I decided to jump on RU58841, I have been on this topical before and had zero problems, however this time I went on it and started burning up really badly, like a hot flush. I was in denial at this point so continued for a week, things didn’t get better and I realised that even though my scalp itched bit with propecia that I was maintaining fine so I stopped everything but Propecia. Over a few months my scalp continued to burn but less so and my hand (which had become insanely dry during this time) had slowly started to clear up.

Fast forward to April, my 30th, was meant to be a great day, my wife planned so much for me but I was a mess with my hormones and was grumpy and irritable, it wasn’t fair on her, I had a hot flush that day and thought this is enough, my hair is not worth me missing out on important moments like this so I quit. Within 4 days my neck started burning really bad and my dry hands came back with vengeance. terrified I started taking the pill again but every 2 days, this didn’t work, then every three days, this didn’t work then most recently tried .25mg a day, this didn’t work. My hot flushes are daily, and now I am developing aches around my groin area. I will not take another Propecia pill but worried about what might happen in the future, though every time I don’t take it my symptoms get worse. Oddly the only thing that helps my dry skin is anti fungal cream, moisturiser helps for maybe 10 minutes but anti fungal cream helps all day.

Does anyone have any advice for this road I am about to embark on, I want to do this for myself but more importantly my wife who for the past 6 months has lost her husband and that kills me the most.

Cheers guys,

Carl

#2

I am sorry this is happening to you. There is little advice to give. Definitely stay away from Propecia, in the longterm it will likely make things worse. A lot of people get better with time, some don’t. I hope you will belong the former group. Good luck!

#3

thank you, taking each day as it comes, having hot flushes every time I eat is very debilitating

#4

Last propecia tablet I took was .25mg on Thursday night (07/06/2018), I have a weird dull ache in my groin area, its hard to locate where it is, but if feels like it bedded beneath the fatty skin either side of the penis and not the testicle, can’t be sure though. My hot flushes are coming with every meal now so will limit to 3 meals a day to keep cortisol in check. My hands are still dry but anti fungal cream works the best, a million times better than moisturiser, unsure why this is.

Things I have incorporated to help, obvs no more propecia, I will stop masturbating/sex for a while, give my hormones chance to balance and exercise. Exercise is a weird one because when I exercise, even just 100 star jumps and get out of breathe my groin ache disappears for 30 mins or so. Can anyone explain why this may be.

I feel a lot of my problems are rooted in stress/anxiety, every time I think about what I am going through I get a bit warmer, like its a trigger for me.

For so many years I used to take what people said about Propecia’s side effects with a pinch of salt, but when you experience it first hand it is shocking how something can have such a Detrimental effect on ones health. Jesus!

I will update in the coming days,

Thanks guys,

Carl

#5

Hey Carl,

If I were you, I wouldn’t touch propecia anymore. I’ve noted that you said you stopped, but do not, no matter how bad the itch (literally and metaphorically), take another pill. My scalp itch intensified and this was why I got back on after my first period with propecia which was mostly incident free, and 9 pills later crashed. I believe the same advice applies for SP, Zinc and RU. I know how annoying it is, but the symptoms I have now are infinitely worse.

Take care and I wish you the best.

#6

Curcumin Phytosome might help you with burning and nerve “groin” ache. Broccoli too. Eat very simple foods with nothing artificial to not agitate your digestion, eat steamed carrots that sort of thing for a week no gluten, no dairy or try fasting. Most of the inflammation is caused by carelessly eating the wrong things and portions which are too big. We have adrenal fatigue too which is why we can’t handle minor stress and it causes so many problems with anxiety.

#7

Hello Guys,

Thought time for an update!

Luckily my hot flushes seem to be a thing of the past which I am very happy about, my dry skin on my hands are still very noticeable which oddly enough give me the biggest panic attacks, I think because I worry about doing small things with my hands now which will make them dry and bleed, though I have noticed using filtered water really helps, I think it is alot less drying.

I still avoid soya because they help my hands massively which I still find to this day very odd, but feel like if they are helping my hands they could be having an affect on my hormones, especially as they have phytoestrogens in them.

I have developed a few new symptoms which are not fun, firstly I sometimes get extremely dizzy, to the point where it feels like my legs are made of lead and my head is super heavy, my team leader had to drive me home from work the other day because I felt like I would faint. Another worrying new development is that my eyes are turning yellow, I went to the emergency room with it and they did emergency tests, my bilirubin levels (what causes yellow eyes) were elevated so I will need to get them checked again soon.

I have severe panic attacks on occasions where I cry hysterically, not a good look for my wife. I am super emotional and panicked but at the same time feel blunt of any emotions, no enjoyment for the simple things.

I guess one good thing from being in the middle of all this is that I appreciate life, health and all that good stuff a hell of a lot more. I read a post I made the other week on a hair loss forum where I said “my biggest fear is going bald”, when I read that I thought “you naive idiot”, you have put your marriage, family and health in massive doubt because of a strip of hair on the top of your head.

I am trying to claw back my life and will not give in to this, I see myself as one of the lucky ones because I can still exercise and more importantly sleep so at least I can have relief from all this.

This won’t make me a victim, I will reclaim what I had!

P.S my balls still hurt (:

#8

Did you try the circumin?

#9

What does that do dude?

#10

Recommended a couple of posts up, wondered if he’d tried and how it had worked out for him.

@worstnightmare

#11

Hello all, thought I would give you an update, nothing has changed in the last year, my hands are still very dry, soya and dairy still help massively and the hot flushes still come when eating, mainly sugary foods but anything really. really confused to what is going on, feels like a nightmare I’m living, everyday , every thought is consumed by this. life is no longer fun,

1 Like
#12

I’m really sorry to hear that. Are you feeling better at all, even a little bit, since this began for you?

Wish there was more I could say to comfort you.

Are you aware that there is ongoing research into PFS?

It’s very slow-going, but I have stuck around for the sake of seeing an end to this syndrome some day.

1 Like
#13

I’m the same my friend just hang in there and please AVOID stress it’ll destroy you even more.

The older forum users have mostly seen some improvements over time so just keep thinking that will be you I’m in the exact same position btw.

#14

Thanks guys, I appreciate you kind words, not to try and seem like I’m attention seeking but suicide is starting to become a daily thought, unsure how long I can hold on for

#15

We know it is tough. Many of us have been through this for many, many years.

Some of us are trying very hard to create more awareness of and initiate more research into our condition. We need everyone’s help to do it. Here are a few things that you can do that are quick, cheap and very helpful for our cause. We need to work together to escape this nightmare and prevent others to experience the same.