I was chatting with some folks in an endo group on FB and had this sudden, massive realization.
I am completely symptom-free from endo.
I have not had pelvic pain in MONTHS. This is the longest that's happened in my entire adult life. Since I was 12 and had my first period, it just got worse until it was just constant and a fact of life. So much so that a diagnostic nerve block for another condition had me in a panic that I'd been paralyzed. I wasn't. I just had absolutely no idea what life was like without the pain.
So what has caused this miracle? How did I get symptom-free?
I addressed all the causes of my pain.
Because endo is only one condition that can cause our symptoms. There are many that can, and do, cause all the "classic" endo symptoms.
Yes, even the painful and heavy periods.
Yes, even the cyclical nature of the symptoms.
I know this because I've lived with it all for almost 30 years. I have had 7 surgeries for endo. I had bowel endo removed. I had a hysterectomy. I tried every hormonal treatment under the sun.
And it just kept getting worse.
But then one day a doctor looked beyond my endo. My relief is the result of that.
I am not a doctor, and what is below is just my personal experience. But I will say that I see it mirrored in so many others throughout the groups for the other conditions, and that the doctors I see for the other conditions see a high rate of their patients also having endo. One even used to regularly consult with the endo center at his hospital, because he believed the connection was just that strong. There are also many here who have seen my other posts, gone for consult, and now find themselves on a similar path towards treatment for these underlying conditions. I cannot stress strongly enough that if you continue to struggle with endo, and are unable to find relief from your symptoms, please consider other conditions. I absolutely know diagnostic journeys suck, but if it results in you being symptom-free, it's friggin worth it (imho, only you can decide that for yourself).
I'm going to paste in a comment I made on a post the other day (with some tweaks for clarity, and there will definitely be edits to this post for formatting!), because I think it explains a lot of it. The post was about misdiagnosis, and I was talking about all the issues that had gotten attributed to endo...but were not. Yes, endo may have played a role, but it was not solely responsible for these issues o
... keep reading on reddit ➡Hi all. I've had a read through the sticky and I can see some potential causes for my issue problem is there's quite a few and not sure if what I'm feeling is sfn waiting to see someone again to start this process off.
Edit: realised I didn't directly ask the questions.
How do I start the process for having this checked. Do the symptoms I have mentioned sound as though it could be sfn Mine started in my abdomen and upper legs is that possible with sfn Is this going to kill me What drugs/supplements are recommended to deal with this horrible burning prickling pain and fatigue Can fibromyalgia cause sfn rather than come with it be caused by the sfn. Thank you
Actual diagnosed issues
Fibromyalgia Me/cfs Bfs Hypothyroidism Fatty liver disease with currently abnormal lft Hypermobile ehlers danlos syndrome I was given ciprofloxacin in Jan 2020 and had a terrible reaction to it. Multiple site osteoarthritis Cervical disc degeneration osteoarthritis disc herniations root nerve impingement Neurogenic thoracic outlet syndrome Pectoralis minor syndrome Hypertension Reynauds (sorry I can't spell that one ) but my fingers go ice cold and painful with temp changes . I linked it to my Hypothyroidism Autism Adhd Multiple mental health issues POTs
Symptoms
Burning prickling sore feeling on skin predominantly on thighs inner shins and some of my abdomen sometimes on arms or chest. Also itchy skin and skin that feels like it's become super tight especially after a bath or shower .
I've had so many tests done on me over the past several years due to health issues from open muscle biopsies x 2 several emg and nerve conduction study tests mri of the spine and brain. Ct scan of brain last March. Genetics tests bloodwork for almost everything you can normally get it for.
All came back normal.
Symptoms started I'd say in October 2020 while on a treadmill at home my abdomen began to itch and burn like my hair follicles were hurting or all the hairs had become sharp and inverted. I had bouts of itching particularly on my scalp for days and days which really hurt . All that stopped but at this time I had a prostate infection I wasn't aware of to begin with. However I developed several different infections at that time too folliculitis cellulitis bxo balanitis strep throat mono my prostate infection came back 3 times and in Jan 2021 they gave me cipro . Within 2 days worth of doses I had had a terrible reaction and my tendons hurt really bad my s
... keep reading on reddit ➡This is absolutely surreal and heartbreaking honestly I am a shell of what I used to be. It all started by a benign inflammation in my urinary tract as my zipper got stuck in the urethral opening so the doc ordered Bactrim for 10 days twice a day and also prednisone that I only took for 2 days. Then in after a couple of days I started complaining of sharp testicular pain, that spread to my genital, perinnial area causing deep and strong pains practically immobilizing for about an hour or so, this is where my barrage of symptoms start I'll list then chronologically new set of symptoms occur every 3 weeks of so
Neurogenic bladder (can't feel the urge to pee most of the time)
Urinary retention (even though my ultrasound showed that I only retained about 1 mm, it still feels like I do retain a significant amounts urine)
Dribbling of urine
Constipation
Erectile dysfunction
Lack of an "orgasm" sensation
Rib pain and pain while inhaling (has mostly gone)
Pins and needles
Muscle soreness
Muscle twitching
Muscle cramps
Shingles when I cross my right leg
Carpal tunnel syndrome
vertical bilateral monocular diplopia
Head numbness in the morning
Visual static (like faint TV signals in my vision)
Tinnitus
Sharp headaches
Gradually expanding Dark blobs when I move my eyes to the periphery
When I'm extremely tired I feel like I get cross eyed vision for a second when I open/close my eyes before the 2 images again merge
Eye pain
Eye twitching
I feared MS but all my MRIs for my brain and spine were clear 3t with contrast it's like just about everything screams MS except for my neuro, opthal and parents who scream that it's anxiety. Now I admit I have a lot of depressive and anxious tendencies coupled with low self esteem and social trauma. But how could this leas to symptoms this specific Fortunately all my body pains and cramps were slight to begin with and have chilled out
Im more concerned about my eyes, I seriously don't know what to do, anxiety is killing me but its more from this situation at present, how the hell can I calm down if Im getting blinded
Honestly I feel like a shell of a person I was 3 months ago
Mid March begin trt 200mg/week, erection quality worsened by late March, 100% erections to 80%, but penis still functioned normally, just felt less inflated.
Used HCG late March when balls started to shrink, erections go from 80% to 85%. Used protocol of 250iu eod to start. I found days of no hcg softer erections than the day I used hcg, especially a few hours after.
April 10 start Ru58841 50mg/day on scalp. No issues, still 85% erections .
May 4 donate blood 450ml. I was feeling sluggish, and had a nose bleed in my sleep that was kind of thick. The donation center said my hemoglobin is 16.9, so hematocrit would be close to 51-, maybe higher if I was dehydrated? Immediately after blood gone, I felt less sluggish and more light.
May 16,use 1mg topical dut, may 24 use 1mg topical dut. Following day felt itchy nipples, gyno symptoms, took first aromasin dose 12.5mg as precaution, next day had a lump form overnight at breast area. Stopped the topical dut after 2 weeks and ai use after that one dose. A few days in during week 2 after 2nd dose and ai dose, erections were at 0%. I had orgasm while fully soft. I believe due to the dut or maybe AI.
June 1 - June 16 erection quality recovered back to 70/80%. I used Leo, Steve protocol for hcg heavy use.. 2kiu eod for a couple weeks. Saw some return to life in penis.
June 17 woke up with burning urethra towards the base of the spongeosum during urination. Suspected Std, booked appointment for June 24 with Dr. The burning urine feeling was only once per day in the morning, and was not as bad if I drank a lot of water prior to bed.
June 30 tests come negative, July 10 more negative tests, urinalysis shows everything normal, no culture growth in urine. Experimented with pt141 to get erections better, but still 80% and no random erections /hit or miss morning wood. Noticing I can only get hard with stimulation.
July 15+, burning urethra now also paired with itchy urethra for rest of the day, persisted into September.
July 27 stop enanthate pins
August 2 start propionate 20mg/day
August 24, took prostate digital exam, Dr thinks it's normal. PSA levels low. Blood work shows e2 at 59pg/ml. Took AI aromasin 12.5mg eod for 10 days. By end of 10 days, erections disappeared. Weak morning woods. It's like my penis trying to get hard but cannot.also notice long and skinny penis, girth has been lost by e2 crashing, is a side effect I read on e2 handbook steroid subreddit.
Late August to early September,
... keep reading on reddit ➡Yesterday I integrated taurine into my supplement lineup and since I immediately got more cognitive functioning back and felt more relaxed I obviously need it there. So I'm going to put this together this best I can using quotes from various pages as it's very complex.
When I have a POIS episode, have mold/environmental toxin exposure to a highest enough degree, and whenever I take any form of THC I notice my face in the same areas will feel almost sun burnt or electric. All of these things increase excitatory neurotransmitters. From mold exposure in an old house i used to live in with a severe mold problem if I stuck my head into one of the closets my face wold start burning in the same fashion and I would get the same exact range of mental regressions.
THC (Delta-8 and THC-V) for some reason is so bad there with me so I've been using small doses to gauge where I am with this, these effects are separate from the main effects of it and are resulting as a cascade from it through the release of neurotransmitters that cause this. Specifically these neurotransmitters are glutamate and PEA. I also have had and still do to a lesser degree since going through treatment with the supplements I'm on now multiple chemical sensitivity and EMHS (electromagnetic hyper sensitivity). Every time I get better I can take more THC without as much of a facial burning effect indicating that there is a connection there.
(from first link) "Mold toxic patients suffer from “total body pain” because of the excessive production of the electrifying neurotransmitters Glutamate and PEA, the excessive inflammation derived from toxic load and deficiencies of the calming neurotransmitters, Taurine and Serotonin, caused by mold toxin-induced destruction of the intestinal lining which leads to poor absorption of the essential amino acids, tryptophan, and Taurine.
The resultant up-regulation of electrical voltage in the body’s nervous system can be dramatic and directly correlates with the measured level of mold toxins. Dr. Sponaugle has
... keep reading on reddit ➡I have red scrotum syndrome which makes sense as I personally believe my condition is called by neurogenic inflammation.
I’d be interested to know how many others also have a red ball sack.
I don't want to step on anybody's toes here, but the amount of non-dad jokes here in this subreddit really annoys me. First of all, dad jokes CAN be NSFW, it clearly says so in the sub rules. Secondly, it doesn't automatically make it a dad joke if it's from a conversation between you and your child. Most importantly, the jokes that your CHILDREN tell YOU are not dad jokes. The point of a dad joke is that it's so cheesy only a dad who's trying to be funny would make such a joke. That's it. They are stupid plays on words, lame puns and so on. There has to be a clever pun or wordplay for it to be considered a dad joke.
Again, to all the fellow dads, I apologise if I'm sounding too harsh. But I just needed to get it off my chest.
Do your worst!
UPDATED 7/24/2021: I was able to get in with a doctor at the Ehlers-Danlos Clinic at Tulane in New Orleans yesterday and turns out….according to him anyway, YES, EDS people do have higher rates of RUTIs for a variety of bacterial and structural issues! He gave me a referral to a uro-gyno without any hesitation, as well as a link to a test he thinks is more accurate for helping people with RUTIs discover what the cause is. And despite being dragged in the thread below for believing a Patreon article written by a non-doctor, HE actually skimmed the bullet points and said that the article explains why EDS bodies have bladder issues “very accurately, in an easy-to-understand way most patients can benefit from.” He also informed me that the “unpublished presentation” a few commenters crapped on as a bad source was a presentation made by The Ehlers-Danlos Society itself, and that while it’s true unpublished papers can be considered poor research in academia, when it comes to patients looking for resources anything put out by The EDS Society is usually trustworthy and helpful. He was very compassionate, and said that it’s hard to find excellent research pertinent to EDS because no one was really researching us for a long time and those that were didn’t have the same funding better-known disorders do.
Hope that’s helpful for some of y’all. I would totally recommend the out-of-pocket expense of consulting with the EDS clinic in New Orleans, it was a very positive experience.
I thought I’d found a good PCP with a solid understanding of EDS, but now I’m concerned. I’ve been battling recurrent UTIs heavily this year, 3 in the last 3 months, and came across this article about UTIs and EDS which says that:
“UTIs are also more common in Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder, and atypical multi-system conditions like dysautonomia as well.
There are multiple reasons for this.
Here’s an incomplete list of those reasons:
-
Birth defects, like overly narrow urethra, due to the collagen matrix abnormalities common in EDS
-
Crappy communication between the brain and the nerves in the bladder (“neurogenic bladder”)
-
Hypermobility-related bladder or uterine prolapse
-
Hypertonic pelvic floor dysfunction (when the pelvic floor and/or urethral muscles cannot relax)
-
Adhesions binding the bladder or “pinning” it to other organs, usually caused by surgical scar tissue and/or endometriosis
-
Mast
I'm surprised it hasn't decade.
For context I'm a Refuse Driver (Garbage man) & today I was on food waste. After I'd tipped I was checking the wagon for any defects when I spotted a lone pea balanced on the lifts.
I said "hey look, an escaPEA"
No one near me but it didn't half make me laugh for a good hour or so!
Edit: I can't believe how much this has blown up. Thank you everyone I've had a blast reading through the replies 😂
It really does, I swear!
Because she wanted to see the task manager.
(Note: I wrote this for college, Psilocybin is mentioned towards the end :) )
Abstract
Cognitive decline and being overcame by bacterial and viral sicknesses at older ages are harsh realities everyone must face. Despite the grim truth that death is inevitable; lions mane mushrooms have shown promise through extensive research that they may have the ability to help the elderly keep their minds as they age (I-Chen, L., Li-Ya, L., Tsai-Teng Tzeng, Wan-Ping, C., Chen, Y., Young-Ju, S., & Chin-Chu, C., 2018). Turkey tail mushrooms contain compounds which majorly boost the immune system and help bodies fight off viruses and bacterial pathogens which are especially dangerous to the aging body (Prem, C. W. 2019). Psilocybin containing mushrooms have been observed to have immediate and long-lasting increases to neuronal connections and dendritic spines (Hathaway, B. 2021, July 9). All this ties into the phrase “successful aging” as researchers continue to battle the negative effects of aging.
Fungi and Successful Aging
“Aging” is something every human being is forced to experience to varying degrees as time passes. The term “aging” from a biological perspective is defined by the accumulation of cellular and molecular damage that presents itself through generally negative effects on the bodies and minds of people (WHO.int, 2021, para. 4). There are many common conditions associated with aging, including but not limited to cognitive decline, diseases, and untimely death. Beyond biology, major life transitions such as retirement, relocation of housing, and the death of friends and/or partners play an important role on people’s social health and this could potentially trigger biological stress responses that farther degrade a person’s physical and mental well-being (WHO.int, 2021, para. 4). Although the future appears to be one of suffering; recently more discoveries and research have been conducted into the realm of “successful aging” giving new hope to better counter act the inevitability of age-related health issues. Some of this research extends into the kingdom of “Fungi” with it’s estimated 2.2 to 3.8 million species (Hawksworth & Lücking, 2017, sciencedirect.com, para. 1). The direction of current research suggests that by consuming certain members of the fungal world, people may show reductions in certain areas greatly associated with negative symptoms of aging. These reductions could help people live out their final days with a greater sens
... keep reading on reddit ➡They’re on standbi
Pilot on me!!
Spinal stenosis is defined as a narrowing of the spinal space and/or compression of the spinal cord and nerve roots as they exit each vertebra. A common cause is changes in your spine as you age. Back and/or neck pain, as well as numbness, tingling, and weakness in the arms and legs, are symptoms.
What is spinal stenosis?
Spinal stenosis refers to the narrowing of one or more sections of your spine. The amount of space available to your spinal cord and nerves spreading off it is reduced. As a result of the narrowed space, the spinal cord or nerves may become inflamed or pinched, causing back pain and claudication pain known as neurogenic claudication.
Spinal stenosis usually develops over a long period of time, especially beyond the age of 50. The most prevalent cause is osteoarthritis, or “wear and tear” changes in the spine that occur naturally as people age. As a result, if certain changes are detected on X-rays or other imaging tests done for a different reason, you may not experience any symptoms for a long time.
To get proper treatments for spinal stenosis visit Pentagon Hospital, which has the best brain and spine Surgeon in Aurangabad.
What parts of the body does spinal stenosis affect?
Spinal stenosis can affect any section of the spine, however it most commonly affects two:
- Neck (cervical spinal stenosis)
- Lower back (lumbar canal stenosis)
Who has spinal stenosis affected?
Although anybody can get spinal stenosis, it is most common in men and women over the age of 50. Younger people who were born with a narrow spinal canal can develop spinal stenosis. A range of illnesses that affect the spine, such as scoliosis or a spinal injury, can induce spinal stenosis.
Spinal stenosis can be caused by a variety of factors.
Spinal stenosis can occur for a variety of reasons. They all have one thing in common: they change the structure of your spine, narrowing the space around your spinal cord and the nerve roots that exit through it. Symptoms such as low back pain and sciatica are caused by compression or pinching of the spinal cord or nerve roots.
The causes are:
- Bulging disks/herniated discs: the vertebral disc is a flat, circular cushioning pad that rests between each vertebra and acts as a stress absorber along the spine. Due to age-related drying out and flattening of vertebral discs, as well as cracking in the exterior border of the dis
Nothing, he was gladiator.
Dad jokes are supposed to be jokes you can tell a kid and they will understand it and find it funny.
This sub is mostly just NSFW puns now.
If it needs a NSFW tag it's not a dad joke. There should just be a NSFW puns subreddit for that.
Edit* I'm not replying any longer and turning off notifications but to all those that say "no one cares", there sure are a lot of you arguing about it. Maybe I'm wrong but you people don't need to be rude about it. If you really don't care, don't comment.
Heard they've been doing some shady business.
When I got home, they were still there.
What did 0 say to 8 ?
" Nice Belt "
So What did 3 say to 8 ?
" Hey, you two stop making out "
I won't be doing that today!
[Removed]
Where ever you left it 🤷♀️🤭
This morning, my 4 year old daughter.
Daughter: I'm hungry
Me: nerves building, smile widening
Me: Hi hungry, I'm dad.
She had no idea what was going on but I finally did it.
Thank you all for listening.
This is absolutely surreal and heartbreaking honestly I am a shell of what I used to be. It all started by a benign inflammation in my urinary tract as my zipper got stuck in the urethral opening so the doc ordered Bactrim for 10 days twice a day and also prednisone that I only took for 2 days. Then in after a couple of days I started complaining of sharp testicular pain, that spread to my genital, perinnial area causing deep and strong pains practically immobilizing for about an hour or so, this is where my barrage of symptoms start I'll list then chronologically new set of symptoms occur every 3 weeks of so
Neurogenic bladder (can't feel the urge to pee most of the time)
Urinary retention (even though my ultrasound showed that I only retained about 1 mm, it still feels like I do retain a significant amounts urine)
Dribbling of urine
Constipation
Erectile dysfunction
Lack of an "orgasm"
Rib pain and pain while inhaling
Pins and needles
Muscle soreness
Muscle twitching
Muscle cramps
Shingles when I cross my right leg
Carpal tunnel syndrome
Slight vertical ghosting in both my eyes ( bilateral monocular, so it could be brain related)
Head numbness in the morning
Visual static (like faint TV signals in my vision)
Tinnitus
Sharp headaches
Gradually expanding Dark blobs when I move my eyes to the periphery
When I'm extremely tired I feel like I get cross eyed vision for a second when I open/close my eyes before the 2 images again merge
Eye pain
Eye twitching
I feared MS but all my MRIs for my brain and spine were clear 3t with contrast, now I understand that always there is a possibility that I could develop visible lesions in the future, I am sure this is the case as I dont think fibro has such specific symptoms it's like just about everything screams MS except for my neuro, opthal and parents who scream that it's anxiety. Now I admit I have a lot of depressive and anxious tendencies coupled with low self esteem and social trauma. But how could this leas to symptoms this specific Fortunately all my body pains and cramps were slight to begin with and have chilled out
I just wanted to vent out my feelings and frustration and hope you guys would share your story with this disease and if there is something I have missed that could explain this no diagnosis but rather suggestions Regards
Hey guys, I’m coming here and posting my story since other places have not been very helpful besides hf forum. I realize I was reckless, and thought I could manage all these hormones because some youtube biohackers do it (mainly MPMD/ leo longevity). These guys take every drugs under the sun and promote a lot of drugs without mentioning the real risks. Anyways, my story is below, and I thank you for reading through and posting any thoughts or ideas as to what may have occurred, and what is occurring now. This will go through in chronological order of events.
Mid March (2021) begin trt 200mg/week split in 2 doses initially, erection quality worsened by late March, 100% pre TRT erections went to 80%, but penis still functioned normally, just felt less inflated. Now I didn’t panic because naturally we all think ‘well its just E2 must be high’. If I knew what would happen in the months ahead, I would have stopped right here.
Used HCG late March when balls started to shrink, erections go from 80% to 85%. Used protocol of 250iu eod to start. I found days of no hcg softer erections than the day I used hcg, especially a few hours after. This was a ‘restoring libido to favorable ranges’ protocol by Vigorous steve. Because of the initial improvements in EQ from hcg, i continued the cycle and didnt think much of the softer erections.
April 10 start Ru58841 50mg/day on scalp. No issues, still 85% erections. MPMD pushing ru as a good hairloss prevention drug. I thought why not, and got from the source he pushes (anigenic). I didn’t notice any issues with erections changing at all. Maybe this played a part slowly over time or maybe it had no effect, but its hard to tell at this point.
May 4 donate blood 450ml. I was feeling sluggish, and had a nose bleed in my sleep that was thick as hell. When i bleed its usually not close to that thick. The donation center said my hemoglobin is 16.9, so hematocrit would be close to 51-, maybe higher if I was dehydrated? Immediately after blood gone, I felt less sluggish and more light. Erections still about 80-85%.
May 16, I decide to use 1mg topical dut since MPMD has a video about the molecular weight of dutasteride being over 500 daltons, meaning it wouldn’t go systemic in a topical application… Boy was this a huge mistake on my part to listen to these guys just because they think they are smart. May 24 use 1mg topical dut for the final time. Following day felt itchy nipples, gyno symptoms,
... keep reading on reddit ➡