Hi, some members have asked about my story, so I promised to share it here. Sorry if it’s way too long but I just want to document as many of the details as I can, just in case any element of my story can shed some light on anything, or help someone in any way. I have read thousands of posts here and I am sure that I suffer from the same “syndrome” as PFS sufferers. I did not take Propecia however. Here is what happened in my case:
Just some background. I’m 36. Born and raised in Stockholm, Sweden. Swedish genes dating back centuries. I have always eaten very well, never ever done drugs, had a couple of glasses of wine every 2 months at most, and ran 8-12 K a few times/week. VERY high sex drive!!!
When I was 24, in 1999, I took Accutane for 6 months. (I lived in Los Angeles at the time.) I didn’t have cystic acne, but enough to make me feel self conscious about it. A doctor prescribed Accutane with no hesitation. When I was on Accutane, I experienced generalized anxiety and extremely dry skin, but that’s it. The stuff cleared my acne permanently and at the time I thought it was a miracle drug. During the following year I noticed the following:
my menstruation became extremely light, clotty and only lasted 1.5 days (down from the average 3 days with good flow)
joint pain and stiffness
eye floaters and horrible night vision/astigmatism
my urine became permanently darker
reduced quality of hair and my eye lashes fell off once
could no longer have even one glass of wine without feeling hungover the day after
an apathetic random mood would come over me occasionally that I didn’t recognize from before
would feel more easily exhausted and usually needed a nap every day
Fast forward 10 years. I now live in London working on my post graduate degree/PhD in Economics. During 2007-2008 I was on Remeron for insomnia. It definitely worked for insomnia but I had severe cognitive side effects from it, which persisted AFTER I QUIT the drug.
In January 2009 I had a minor surgery in my uterus. I had this surgery done with, literally, the best intrauterine surgeon/endocrinologist in the world, Dr. Charles March in Los Angeles, former head of gynaecology at USC Medical School. The surgery was to cut a septum (a division) inside my uterus and is a non-vascular small procedure. Thus, he did not cut through any tissue with nerves or blood. The surgeon recorded the whole surgery on DVD, therefor I know that he did not cut through vascular tissue. I’m just saying that to clarify that nerve damage is not an option in my case, and has also been tested and ruled out since! In order to optimize healing, he gave me a high dose of synthetic estrogen (Estrace 4 MG/day) for three weeks. This is a standard/routine prescription after such a surgery, and is done to spur the growth of the endometrium, serving to prevent the forming of intrauterine adhesions. I took the first dose of estrogen right after the surgery.
Two days after the surgery I felt good and had an urge to touch myself down there (OK, I hate the word: masturbate! ) but I noticed the entrance to my vagina and my g-spot was 100% numb and vaginal sexual sensation was gone. I have done this (masturbated) daily since age 14 and I have NEVER felt anything like this. I still had normal clitoral sensation and had a normal orgasm. At that time I didn’t worry too much about it, I was more relieved that the surgery was over and done with, and I figured that sensation would come around.
In the following few weeks I began feeling an overwhelming sense of fatigue, non restorative sleep, major lethargy, general loss of well being, breasts lost fullness and felt dead, labia lost fullness, loss of motivation and scary cognitive problems. I was trying to study but I was so bad cognitively that there was no way for me to understand anything at all, or learn anything. I went to lectures but my short term memory was so damaged that I could literally not remember the first of two consecutive sentences, so lectures made no sense to me what so ever. I began to avoid talking to people because of cognitive difficulties. My cognitive problems were really an intensification of what I had already experienced with Remeron. I couldn’t connect with my emotions properly and increasingly, all I wanted to do was to move minimally and just sit and stare. I had crazy blood sugar crashes and would literally eat tablespoons of sugar to pick me up again.
I had contact with the surgeon in Los Angeles, who is also an endocrinologist. I told him about all my symptoms and he responded by saying that during his 40 years of experience and over 2000 similar surgeries, he had never heard of such a constellation of symptoms (including loss of sexual sensation).
My health spiraled downwards fast from January through June 2009. By June I was a wreck. I was so lethargic and ill that I didn’t even manage to make myself bring in a medical note to my university so I could postpone my degree. I simply didn’t show up for exams and so I was dropped by default from the program. 15000 GBP in tuition lost!
One day in June 2009 I sat in front of my laptop and found that I didn’t have enough energy to lift my right arm to the key board. My focusing abilities were less than one second. In June I brought the following list of symptoms to my GP here in London:
Strange stuff going on with my body since January -09:
100% loss of sexual sensation in vagina.
Vagina feels numb.
Entrance to vagina is tender and numb at the same time. Feels totally off.
Can’t feel orgasms anymore. I can have them with effort but can’t feel them. Like ghost orgasms.
Hardly any natural healthy cleansing vaginal discharge.
Arousal lubrication is too watery.
Penetration is extremely painful (even with loads of lubrication).
Ovulation discharge/lubrication is just water.
Breasts have shrunk, lost their fullness and they feel like two pieces of dead meet.
Cannot feel music the way I used to.
When I look at a hot guy my body doesn’t connect. There is a disconnect between my brain and my body.
Loss of libido.
I don’t fantasize about sex anymore.
No random urges to masturbate.
Crashing after orgasm - makes me feel really pooped out for hours.
The thought of intercourse is appalling.
Serious cognitive deterioration – it’s frightening!
No working memory.
Weight gain and fat redistribution. I increasingly look like an old lady.
Sleep all the time.
Feel like I have needles and pins in my head all day long, as if there is not enough blood supply to my head.
Inept of waking up in the morning – feels like I am waking up from general anesthesia.
Always drowsy and tired and exhausted every waken hour.
Frequent urge to take naps.
Pony tail half as thick – have lost half of my hair.
Total physical exhaustion after eating, legs caving in under me, then freezing cold or hot, limbs feeling heavy like an elephant.
Hot flushes after eating.
Sweat smells like sugar – intense sweet smell.
Anxiety after eating sugar (heart racing).
Feeling as if I’m in the process of dying after running/working out.
Voice easily hoarse/breaks.
Menstrual cycle is too short or too long, used to be 28 days sharp, on the hour.
Menstruation is 4 hours long and very light.
Everything surrounding my period is gone, no breast swelling, no PMS, no bad mood.
Loss of vaginal fullness.
Insanely painful ovulation for days: I can’t even get out of bed sometimes, ovulation causes my entire body to feel inflamed, can barely poke the stomach from pain, pain when urinating to the point of hyperventilation, feverish and just ill.
Skin in vagina feels too thin and fragile.
Can’t keep warm no matter what. I’m always cold.
Lethargic, I just sit and stare.
Crazy hypoglycemic attacks daily.
Crazy mood swings throughout the day.
Can’t even remain focused for 1 second, literally.
Feel like I’m going to faint.
Can’t taste food anymore. Only on the sides of the tongue. Taste buds on the tip are dead.
Legs and arms fall asleep in resting positions.
Muscle weakness off and on.
Strange muscular back pain/burning pain off and on.
Skin lost its elasticity – I look 40 years older.
Feel awful when I wake up in the morning.
No oil produced in skin anymore. Dry skin.
No salty taste anymore when I sweat.
Sometimes feels as if I burnt my tongue when I didn’t.
Puffy face and on the verge of yellowish.
Wake up with swollen eyes, especially the right eye.
Right eye looks frightening, like a snake eye.
Very tender right side of neck.
Burning at the back of the tongue.
(I had insomnia and insane hypnic jerks before this happened, so I can’t contribute insomnia to this problem. I have treated this wonderfully with Natural Calm magnesium and magnesium oil from the Zechstein seabed.)
I am sure I have forgotten other symptoms that I had. My GP concluded that this is due to anxiety after my surgery. The following two years I have tried everything under the sun.
MARIA’S HEALTH CV
August 2009: began with Bikram Yoga 5 days/week and it helped significantly with general well being. I’m still doing this 4-5 days per week. Thanks to this my body fat has gone back to be normally distributed for my age, and I no longer look like an old lady.
August 2009 - March 2010: I was convinced that I had a thyroid problem, although my TSH was below 2.0. I learned all that I could about the thyroid. Initially I took selenium by eating loads of Brazil nuts. I took L-tyrosine as a supplement and Kelp for iodine. This helped quite a bit with life wrecking tiredness, tingles in head and somewhat with cognitive problems.
March 2010: I was sent to one of the best endocrinology department in the UK (in the world I guess too) at St. Bartholomew in central London. They took an extensive blood test and the doctor saw me for 10 minutes and concluded that there was nothing wrong with me and that I must have “Chronic Fatigue Syndrome”. I was highly annoyed, told him that was this was very convenient for him to conclude and then I walked out of the room.
March 2010: I ordered Armour Thyroid from the International Pharmacy. Began a low dose, which made a HUGE difference in my fatigue and body temperature. However, it made my lethargy much worse. I am still on a very low dose to manage my feeling of drowsiness.
March 2010: Saw the UK’s best endocrinologist, Professor JP Monson, at Harley Street. The greatest most arrogant as hole I have ever met, literally. I paid 300 GBP for a 40 minute appointment. He didn’t even look at any blood tests. He asked about my history, hooked onto the fact that I had been on Remeron for insomnia in the past. He said “this does not resemble Chronic Fatigue Syndrome”. You need to see a psychiatrist, if you don’t you will waste another two years of your life until you see one." “You need to learn how to interpret the world differently.” Needless to say, I was extremely upset after this.
May 2010: I saw Dr. Peatfield for adrenal fatigue and hypothyroidism. For those of you who don’t know, he’s pretty well known in the hypothyroid circles. He lost his medical license in the UK for treating people for hypothyroid symptoms even when blood tests didn’t indicate it. I love doctors like that. I first read his book actually, then I saw him. A really great doctor!!! He just instructed me on how to support my thyroid and adrenal glands, pretty much already what was written in his book. I began 4 mg of vitamin C/day. This really helped with my frequent needs to take naps throughout the day. It also, unexpectedly, improved my night vision by about 50%. (I later read that the eyes store significant amounts of vitamin C).
July 2010: Added Virgin Coconut Oil to my regimen, 4 tablespoons/day. This actually made me feel a great deal better in some respect. Most importantly, I stopped smelling like sugar all the time!
It had now been one year since I felt my worst, and although I by no means felt recovered, I had made a lot of progress with fatigue and general weakness. Sexually - no improvement. Lethargy - absolutely no improvement, if not worse. Cognitively - no improvement. At least I was not sleeping my life away.
November 2010: I ordered Cortef (Cortisol) from the International Pharmacy. I took a very very low dose. OH MY GOD! After 10 days on this stuff I was worse than I have ever been in my entire life. I got soooooooooooo sick! I was so lethargic and weak that I barely could get up and cook, let alone go to the supermarket. I felt as if my body was dying. I got strange neurological symptoms, such as I couldn’t move properly, dropped things on the floor, walked into the door etc. My face became swollen and puffy and I once again began to smell like sugar, worse than ever. I stopped taking the stuff after 10 days and it took me weeks to recover.
December 2010: I added high dose vitamin B complex from Solgar to my list of supplements. I tolerated this well and felt an improvement in my general energy and also a reduction of anxiety when sleeping (like heart racing and pounding).
February 2011: I read David Brownstein’s book “Iodine - Why You Need It” and began supplementing with a high dose of iodine. This helped mildly with waking up a little easier in the morning and took away my dizzy spells. No negative side effects. An unexpected positive side effect was that, after 5 days on it, I woke up in the morning and had SIGNIFICANTLY better vision. It felt as if someone had zoomed in my eyes over night the way you zoom in with a camera. I could see straight into my neighbor’s kitchen for the first time. It wasn’t all blurry and fuzzy looking. Moreover, it 100% restored my horrible night time vision and astigmatism that I have had since my Accutane days. 100% I still cannot believe it when I go out at night. I have perfect vision!!! Everything looks so intense, the colors are intense and the blurring of lights is completely gone. I can drive safely at night too. It’s amazing!!!
March 2011: Went back to Los Angeles for 3 weeks to visit friends. I made an appointment with Dr. Jennifer Berman, leading US doctor in Female Sexual Dysfunction. (She used to have a show at Discovery Health with her sister.) I was now convinced that I was lacking in testosterone. Dr. Berman tested my vaginal nerves and ruled out that I have nerve damage. She was a bit puzzled over my case, repeatedly referring to nerve damage to then correct herself by saying “oh no, we tested that, it’s not your nerves.” I brought in my blood test results for her and they were all normal, and testosterone was in the lower 1/3 of the range. She prescribed the following (all bio identical):
Estrogen pills and vaginal
Vitamin B12 nasal spray (I didn’t take that, way too expensive)
Fish Oil (I have taken that for years, high dose, for dyslexia)
I guess I felt somewhat better overall on the hormones, in some strange way, but it didn’t target the problem. It felt like a fake sense of well being. Moreover, it did absolutely nothing for me sexually. My free testosterone was even up to 6 times the upper limit for women after supplementing and still zero effect. Up until now, my g-spot sensation had been restored by about 10% since the beginning of the problem. After I began supplementing with hormones, this immediately reversed to complete numbness. My menstruation, which before HRT had increased back to good flow and 24 hours long (rather than 4 hours long), now once again reversed back and became only half a day long at most and very light. I also became fatigued and drowsy again, with an increased need to sleep.
April 2011: I got off all hormones and the 10% g-spot sensation returned again. By this time I had discovered this Propecia forum, and realized that I had the exact same symptom profile as the guys on here. I had also began to read scary stuff about Accutane. I had a lot of contact with Awor, who “interviewed” me extensively and felt assured that I suffer from the same problem as you guys.
May 2011: By now, my fatigue had more or less vanished. My remaining MAIN problems were cognitive difficulties (memory, creativity, brain fog, problem solving, working memory), lethargy, loss of motivation, mood swings and sexual numbness and libido.
At this time I had resorted to NOT have anything to do with doctors again. Even if they would prescribe a promising drug I wouldn’t take it. I accepted that at least my body is making progress in the right direction, albeit in slow motion, and I will try to support it naturally. I bought a masticating juicer and began making tons of beetroot juice (that’s something for men to try as it raises your nitric oxide through the roof), dark green juices and carrot juice. I eat religiously according to both “The Blood Type Diet” and “THE EDGE EFFECT” (I eat where they overlap for me), which seems to have done wonders for my crazy attacks after meals. I also decided to support each organ in the body with supplements, one by one. I had already taken care of the adrenal glands and the thyroid, the brain was supported by “The Edge Effect” diet, so I decided that the next organ would be the liver.
MILK THISTLE This is important!
After reading about various liver support supplements I decided to start with Milk Thistle. “Milk thistle, Silybum marianum (Cardius marianus) (Fam. Compositae) fruit contains silymarin, a mixture of flavolignans including the isomer silybin, silicristin, and silidianin, of which silybin is the major component.” ~Drug Discovery Today Volume 14, Numbers 19/20 October 2009.
Now, there is a brand out there that claims to be the most effective Milk Thistle brand on the market. They have even managed to patent it. It’s called Maximum Milk Thistle. In contrast to other brands that include ALL of the flavolignans, Maximum Milk Thistle only contains silybin. I am pointing this out for a reason (it will make sense further down). Anyway, I decided to be on the safe side and bought Maximum Milk Thistle although it’s about twice as expensive. People rave about it.
I took 800 mg/day, which is the dose that has been used in clinical liver studies. Only after a few days I noticed a HUGE lift in my lethargy, mood, loss of motivation and just general energy. When I took it before bedtime I had much better sleep, began to dream again and I woke up feeling somewhat refreshed. I kept taking it right before bedtime. for the first time, I felt a slight sense of up and go in the morning. I began to plan my future again. It felt like a miracle. The bottle ran out and I waited to see what would happen, and I quickly felt worse again. I bought a new bottle and in a few days the same benefits emerged. My breasts began to feel full and alive again. I stopped crashing after orgasms. My skin began to produce oil during sleep. I once again began to sweat out salt when doing my Bikram yoga. My cognition improved significantly. My mood swings stabilized completely. I once again could FEEL music. I would actually gain muscle from my yoga. Focusing abilities improved drastically. My menstruation has stabilized to 28 days sharp once again, on the hour, Monday nights at 9 pm. Labia became fuller again. My ovulation pain almost disappeared.
July 2011: Then in July, my health store had run out of Maximum Milk Thistle so I bought another regular brand. I just expected that it would not be as potent, but I did NOT expect that it would make me worse. After about five days I was totally emotionally numb, felt cold, couldn’t smile, didn’t care about a thing. I quickly got off the stuff and returned to normal in a couple of days. I got a hold of Maximum Milk Thistle and continued taking it before bedtime. I know that Awor wrote that he crashed on regular Milk Thistle. Therefore, since regular Milk Thistle contains several flavolignans, and Maximum Milkt Thistle only contains silybum, I am wondering if there is some other flavolignan that we can’t handle?!?
I suspected that the glutathione boost from the milk thistle is what helped me so much. At some point in July I bought N-acetyl-L-cysteine (NAC), which supposedly helps with intracellular glutathione. I did not feel an immediate effect from this but I took it for 60 days.
August 2011: By now I felt really well, like overall 80% and 100% in some aspects. I began to feel a desire for intercourse, a few times felt raging urge to have sex, I felt a need to masturbate daily or more often, my sensation began to fluctuate, and a few times was about 30%. I was soooooooooooo happy to feel this good.
September 2011: I then did something stupid. Because I still wanted to try things out to get full sexual recovery I went to see a Chinese doctor. She put me on some kind of ridiculously expensive tea for 3 weeks, containing 5 herbs (she didn’t tell me what they were and I forgot to ask). Although it didn’t harm me energy wise, it totally reversed my improvements sexually. After only a few days on the stuff my g-spot sensation was down to zero again, and it is still like that. Completely numb.
October 2011: Stubborn as I am, I kept trying stuff. So I now ordered Kefir grains so I could make my own Kefir. After supporting the liver I decided my gut would be the next organ on the list. I got my grains from Dom in Australia, who has like a famous “Kefir farm” over there. I began to drink A LOT of Kefir (I love the stuff!) and I would drink the whey and all, about 1 litre/day. Big mistake. After about a week I had major detox boils on my skin, insomnia, I became so lethargic that I wouldn’t get out of bed all day, my mental energy crashed, I began having problems after eating again, total loss of libido. (Although, my itchy foot totally cleared up, what seems, permanently.) As soon as it was clear as glass that I couldn’t handle it, I stopped taking it. I immediately began to improve again.
October 2011: Late October, as soon as I had almost completely recovered from my Kefir drama, I bought a series supplements supporting the liver. I got the list from Dr Sandra Cabot’s book “The Healthy Liver & Bowel Book”. I bought glutamine, glycine, taurine, cysteine, Biotin, Inositol and Lecithin. This would result in much higher dose than buying a regular liver detox kit. So I thought that was wise. It was not. After a few days I began, again, developing crazy detox boils on my face. (I always get them when I do something that is supposed to detox your body). I became increasingly lethargic. Had cognitive problems and pretty much crashed in every conceivable way. A few days ago a quit taking everything. Today I feel really bad in every way! I hope I will recover quickly from this.
My plan from now is to only continue with stuff that has made me feel strictly better. I will continue Milk Thistle and N-acetyl-L-cysteine. Although I doubt that depleted glutathione is the cause of this problem, it certainly seems to be involved in some way. I have a couple of experiences which can be indicative that glutathione is a problem here.
Also, if anybody is interested in trying milk thistle I can elaborate a bit, I have some more stuff to say about my experience with it.
Phew! For those of you who managed to read the entire story: thank you for e-listening! It felt good to get that off my chest.