Let's beat this bitch - no hope's story

Member Stories
#3

two years on, thought i should update even though no one really checks this anymore.

atm things are generally better than they were two years ago, but still not great. main worries atm are:

  1. brain fog - still have this and it sucks. mainly just feels like my cognition is impaired. it’s especially noticeable when looking in the mirror or talking to people as it’s really hard to concentrate and actually take in everything without focusing on just one thing. really hard to explain. brain goes into a daze when reading, especially anything complicated. my ability to hold conversations has also taken a huge tumble as i pretty much forget words constantly, slur them (“pacific” instead of “specific” etc), or say the totally wrong word in a sentence and have to back track.

really, brain fog is by far the worst symptom of mine and i feel like i could almost live an ok-ish life if i could just get it sorted.

  1. digestion - don’t think i mentioned this originally on the board as it seemed to be a lesser problem then, but it’s becoming pretty bad. basically either constipated or have diarrhea most of the time. usually comes on after eating. have to make sure i’m near a toilet constantly, which sucks whenever i’m on a long bus journey etc.

  2. gynecomastia - also don’t think i mentioned this too much, but it’s getting worse. have basically grown breasts that have an actual feminine like curvature to them. almost at the point where i need some kind of bra.

  3. numb dick/lack of erections - yeah, the usual. have periods where i can get erections at night but they mostly don’t happen anymore. originally thought working out helped but doesn’t seem to now.

have a huge amount of other symptoms (of course) but these are the ones that are affecting me the most at the moment.

oh, also the numbness in my foot finally healed up (i think?). have convinced myself it was nerve damage but it seemed odd as i had only been sitting on it for a short while. weird.

going to try and cut back on drinking in the future/exercise, and potentially take up meditation or something. gotta get rid of this fog.

#4

Thanks for the update. I enjoy reading threads where we can see progress through time. Sorry things haven’t picked up more quickly for you, but (sad to say) at 2 years on, it’s still early in the game. Hang on.

#5

Yeah completely with you about the brain fog, if it would just go away I’d be happy. 5years+for me now.

#6

No improvement at all?

#7

Na

#8

Brainfog sucks… I often forget easy words or have to think more than i used to…
But persistent fatigue (in my case) is by far the worst.

#9

Why do you even continue to live? Seriously. This is no way to live…

#10

I don’t have any of that forgetting easy words, I just feel very disconnected from the world.

#11

thanks for the replies guys, will try to keep this updated

everyone says brainfog is one of the things that tends to improve the earliest so i’m holding onto that thought at the moment

ordering some probiotics and might consider doing a mini water fast or something, we’ll see. obviously hard when working a reasonably physical job and living with a partner though.

#12

Have you been able to try any methylation supplements yet? Getting those dialed in was very helpful for my own brainfog.

#13

I take B12 and B-Complex but don’t really see that much of a difference. Any brands/recommendations?

#14

yeah i did, i think i posted about my experience in one of the methylation threads.

used a sublingual b12 and folate (metafolin). have tried from scratch three or so different times and each time i’ve come out feeling terrible. brainfog gets amped up and all the crash symptoms start up again (tingling on side of face, twitching muscles/eyes/nose, bursts of tinnitus etc). think the longest i’ve lasted is a week.

#15

Do you have full hormonal blood tests done? I have high but in range estradiol, but high low sbhg wich creates estrogen dominance even with normal levels. Addressing theses things could help.

#16

Wanted to follow up if ur still here with the penile dents, have those improved at all?

#17

Hi all. Back again unfortunately.

I’ve been mostly living the last however many years (almost 9?) as normal as possible. Definitely not recovered, basically with minor brain fog that i somehow managed to get used to and a reduced libido/numb dick etc. The worst symptom during this time was probably digestion, at one point i had diarrhea after every meal. This got a bit better with fasting and eating lots of probiotic foods but i still need to be near a toilet 24/7, especially when eating. Oh also, in April last year i went on a 35km bike ride for the first time and had a completely numb dick after. Felt like the crash. It slowly resolved a bit, but hard to say what numbness was from the bike ride and what was from the fin? I think we’re more susceptable to our extremeties falling asleep, so be careful.

I’d like to clarify in the first post i talked about tramadol helping me. It may have, but in retrospect i think it was because a month after i crashed i moved overseas with my GF. I think the improvements were due to a lack of stress and time not thinking about my condition?

Anyway that brings us to today. In early January this year i got a dodgy mole excised from my calf. It took a month to get the results, during this time i got super anxious and had pretty bad fatigue. Like i could sleep for 12 hours and nap for another hour in the afternoon. Also the brain fog ramped up. After i got the news that the mole was benign the fog didn’t go away. Left it for a week before i ordered some sups i thought would help… glycine, l-tyrosine and… tribulus.

On the Friday night i took 1 glycine pill and 2 of the trib. Woke up the next day and went to the bathroom… my dick was massive. Like the biggest it’s sat flacid for a very long time, was pretty stoked. Took another 2 pills and an l-tyrosine and went about my day. Went out to dinner and was definitely more axious than usual, put it down to the fog from the melanoma scare. Next day woke up to piss and it was a bit small and numb. But that still happens ocassionally so i ignored it. Next day woke up, think i had 1 trib pill? Less activity downstairs but not a full blown crash. Went to a friends place that night with v bad brain fog. Had 6 beers and felt exactly the same as i did on 0. Next day could still get an erection but definitely lost a bit of feeling. Haven’t taken any supps since, apart from vit d.

Just over a week later and I’ve def had some sort of crash. Praying i improve to baseline. I tried getting it up to porn and couldn’t a few days ago, managed to have sex afterwards but took a lot of manual stimulation. Last night i focussed as hard as i possibly could without stimulation cuddling my GF and got it up to about 70%. So it seems to be improving? Brain fog is not though. If anything it’s gotten worse. I have a driving test in less than a month that I’ve had to cancel and can barely work. Have to read sentences 8 or so times before i parse what they mean. Much much much worse than baseline. At least i’m not as fatigued i guess?

I cried for about an hour last night for the first time in years. It’s horrible. I could live with a half functioning dick and no libido, fucked digestion and urinary issues but i need my brain. It doesn’t even have to be 100% but at least back to pfs baseline. At least i could fake my way through life pretending i was normal.

Does anyone have any tips? I guess wait it out? I have a doctors appt in 2 days and I’m gonna try and get as many bloods as possible. At least PFS is considered a relatively real thing now? Will still probably think I’m crazy. Also should i try and get a referral to an endo or neurologist? Thinking neurologist? An endo wont be able to do much but prescribe me TRT or AIs right? Neither of which i want to take…

Anyway, sorry for the long post. A lot to catch up on! I’d also be grateful if anyone could let me know what’s come out of all the studies recently, I’m hearing up regulated ARs are confirmed and that there’s proven epigenetic change? Which means our DNA is fucked? Never went as deep into all the science as you guys.

Thanks!

1 Like
#18

Not improved but hasn’t got worse, thank god

#19

I never got bloods. I asked but my doc refused at the time. Idiot. Funny reading this thread back, i mentioned getting my thyroid tested but i have 0 recollection of that. Strange!

#20

Hi @no_hope

I’m sorry to hear you’ve had a worsening. The best advice I can give you is to give it a few weeks to ride it out, as many people who report worsenings seem to regain their previous baseline. There’s every chance the neurological effects you’re feeling will dissipate if they weren’t a part of your baseline previously.

If you want to visit a doctor, I’d recommend taking our study abstract pack, which you can find on the PFS Network website. There is probably not much they can do, however, so I’d save your money.

There is indeed a lot to catch up on, as it seems you haven’t been around in 7 years! Baylor’s research published, which gives us the best understanding of PFS to date, and confirms what the group running PH has long hypothesised - that the AR is overexpressed in PFS patients. It also showed major dysregulation of gene expression. That doesn’t mean our DNA is fucked, it just means the way our signalling works is dysregulated.

There is also now a patient-led PFS charity, which was formed out of the group who runs this site. We have funded a new study into PFS a month ago, which will build on Baylor’s findings. We are also active on YouTube and our channel has many interviews and stories from PFS patients speaking out.

The best thing would be to have a look around our website and YouTube, and sign up to our mailing list if you’d like to stay up to date.

I hope this latest worsening levels out for you soon. Try to not think too far ahead and hopefully it works itself out.

Take care.

2 Likes
#21

Thanks so much Sugar. You guys are the best. There’s been so much progress in the last 9 years, seems like we’re finally being taken a bit more seriously by the medical establishment. Which is promising. It’s even listed as a syndrome on my country’s medical safety register! It definitely wasn’t back in 2013.

I doubt much will come out of the appt, just hoping to be taken seriously so i can get some bloods. Which won’t say much, even if i get a full panel, just feel like i can’t sit back and watch my life deteriorate in front of me.

3 Likes
#22

hey all, thought i’d give an update. it’s going to be a long one.

my visit to the doc went ok. he was more understanding than after my first crash, but was clearly stumped. even suggested i go back on fin! told him fuck no obviously :joy:. he prescribed cialis which i’ve been taking a few times a week, and ordered me a pretty thorough blood panel which i’ll post below. he didn’t order a hormone panel so i did this myself a month later. i’ll post that below as well.

i’ve had improvements in some symptoms, namely insomnia, anxiety, and digestion. my sexual sides are pretty consistent and haven’t really improved. brain fog is a bit more all over the place. some days i feel like i’m 90% back to my pre-2nd crash baseline, other times zero improvement. i also have numbness in my temples and forehead that seems to get worse when i have a a flare up. i guess this is what others refer to as “head pressure”?

what has gotten substantially worse is my gynecomastia. i got gyno while i was on fin, but it’s been pretty stable since then. i’ve had some sensitivity over the last few weeks but earlier this week it flared up really bad, like a cold burning pain in both nipples and aching in my chest. my current theory is that my test is actually the highest it’s been for a long time (probably because i’ve completely cut out alcohol, work out more and am taking more vit d than usual?) and has been aromatising to estrogen. i tested this by not taking vit d or working out for 2 days and the pain subsided a bunch. anyone have any tips? taking an AI is a last resort but i really don’t want my gyno to be even more prominent than it is, i already look bad enough.

here’s my current protocol:
cialis - this helps with bloodflow but i try not to take it too consistently as 1. it’s expensive as fuck and 2. i don’t want to be too reliant on it. i stick to 5mg, most i’ve taken is 10mg.
vitamin d - i stick to 5k IUs a day or less.
weights - i try and lift most days of the week. mostly dumbbell stuff at home. i’m currently stronger than i was before the 2nd crash. i think because i’m no longer drinking and am working out a little more. probably in the best shape of my life atm, if you ignore the tits.
running - usually run 6km twice a week or so. i want to do more but can’t because i’ve got shin splints.
diet - i’ve pretty much completely cut out alcohol (i’ve had two glasses of wine in the last month, i used to drink 5 days a week). i haven’t had gluten at all in a month. this has definitely helped with digestion. haven’t had diarrhea after eating in a long time. i’ve also cut out refined sugars.
cold showers - i have a cold shower every morning. this may slightly help with cognition but definitely helps with dry skin. my forehead is less flaky and painful since i added these to my regimen.
bathmate - i pump a few times a week but i’m also afraid of fucking up my dick even more. so i try to not overdo it.

here are the bloods ordered by my doc back in february. most notable is low WBC and top of range albumin.

17/02/2022

HbA1c: 28 mmol/mol ( < 41 )
TSH: 0.99 mIU/L ( 0.40 - 3.80 )
Creatinine: 69 umol/L ( 60 - 110 )
eGFR: > 90 mL/min/1.73m2
Total Bilirubin: 16 umol/L ( 2 - 20 )
Alk. Phosphatase: 46 U/L ( 20 - 110 )
GGT: 15 U/L ( 10 - 50 )
ALT: 18 U/L ( 5 - 40 )
Total Protein: 76 g/L ( 65 - 80 )
Albumin: 48 g/L ( 34 - 48 )
Globulin: 28 g/L ( 25 - 41 )
Calcium: 2.48 mmol/L ( 2.15 - 2.55 )
Phosphate: 0.97 mmol/L ( 0.80 - 1.50 )
Adjusted Calcium: 2.38 mmol/L ( 2.15 - 2.55 )
CRP: <3 mg/L ( < 6 )
Haemoglobin: 156 g/L ( 130 - 175 )
RBC: 4.85 x 10e12/L ( 4.30 - 6.00 )
Hct: 0.44 ( 0.40 - 0.52 )
MCV: 91 fL ( 80 - 99 )
MCH: 32 pg ( 27 - 33 )
Platelets: 231 x 10e9/L ( 150 - 400 )
WBC: 3.9 x 10e9/L ( 4.0 - 11.0 ) L
Neutrophils: 2.4 x 10e9/L ( 1.9 - 7.5 )
Lymphocytes: 1.0 x 10e9/L ( 1.0 - 4.0 )
Monocytes: 0.4 x 10e9/L ( 0.2 - 1.0 )
Eosinophils: 0.1 x 10e9/L ( < 0.6 )
Basophils: 0.0 x 10e9/L ( < 0.3 )
Nucleated RBCs: 0.00 x 10e9/L
Cholesterol: 5.6 mmol/L
Triglyceride: 0.7 mmol/L
HDL Cholesterol: 1.85 mmol/L
LDL cholesterol: 3.5 mmol/L
Chol/HDL Ratio: 3.0

here’s the hormone panel i ordered myself. would’ve loved to get DHT but it was more expensive than all of the below combined so couldn’t justify it.

17/03/2022

DHEA-S: 9.0 umol/L (2.4 - 11.6)
Serum B12: 327 pmol/L (170 - 800)
Serum Folate: 14.9 nmol/L (9.0 - 45.0)
FSH: 1.3 U/L (1.0 - 12.0)
LH: U/L 5.4 (1.0 - 10.0)
Progesterone: < 1 nmol/L (< 3)
17B Oestradiol: < 60 pmol/L (< 136)
Prolactin: 206 mU/L (90 - 400)
Testosterone: 15.9 nmol/L (9.0 - 25.0)
SHBG: 50.2 nmol/L (14.5 - 48.4)
Free Testosterone 250 pmol/L (204 - 637)
% Free Testosterone 1.57 (1.59 - 2.95)
Free T4: 16.3 pmol/L (12.0 - 22.0)
Free T3: 5.0 pmol/L (4.0 - 6.8)
TSH: 1.2 mIU/L (0.40 - 3.80)
Vitamin D: 82 nmol/L (50 - 150)

questions:

  1. my panel looks pretty consistent with others here. anyone have any tips? i obviously need to bring shbg down which should boost free-t?
  2. not sure how to interpret estradiol and progesterone? i think they’re both in range as they’re less than the reference ranges? worth noting this is the only estrogen marker i could order through this company
  3. any tips for the gyno? hesitant to take an AI but am toying with the idea of a natural one eg: DIM or Boron? i know others have crashed on these but i need to do something
  4. has anyone had gyno surgery? i’m considering it, but would need to get the pain under control first. also worried about 1. cognitive issues from the anesthesia and 2. slow wound healing.

thanks!

ps: my GF had a positive pregnancy test this month. so at least i know i’m somewhat fertile? we’d been trying for 6 months or so and it finally happened in the month after i crashed for the 2nd time. weird! maybe cutting out alcohol helped? little bit worried about the kid being fucked from PFS but as far as I know most people here have had kids fine right? let me know!