Appreciation post: my best friend is getting married soon and is altering her plans to accommodate to my chronic pelvic pain.

Iโ€™m part of my best friendโ€™s wedding in July- With covid, she and her fiancรฉ have changed so many plans and altered the wedding 1000x. With all of this covid fiasco craziness that comes with planning a wedding, she always incorporates me and my disability into the plans.

Side note: Just yesterday, my medical leave of absence was extended by my OBGYN until I see the top Endovascular/Pelvic Pain specialists in my province. Currently the waitlist is 5-18 months (vague, right?). I am currently diagnosed with moderate to severe chronic pelvic congestion syndrome, the beginning stages of Endo, and waiting for more surgeries and tests to rule out other conditions.

Anywho, back to the wedding- as I wonโ€™t be able to walk far (my veins really just donโ€™t like me), and reclining or laying down is my best friend, sheโ€™s ensuring I have mobility aid, places to rest, etc. She even said โ€œif we have to carry you down the aisle and youโ€™re lounging at the alter, we will do just that.โ€

This is my best friendโ€™s special day- not my day. However, she is making sure my day is as wonderful as herโ€™s.

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๐Ÿ‘ค︎ u/MissyVein
๐Ÿ“…︎ Apr 28 2021
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In hopes that other men here can learn from my mistakes: it is not only possible to masturbate too much, but it can cause chronic pelvic pain as well.

I did get the memo growing up that masturbating is healthy, but I apparently did NOT get the memo that masturbating 3-5 times a day due to covid boredom can cause severe pelvic dysfunction and even UTIs. Let me explain:

I'm only 25, but have had mysterious dick and ball pain for almost 2 months even after taking antibiotics to knock out my highly unusual male UTI. The most noticeable lingering symptom was a horrible burning in my urethra after masturbating which would go away on its own after an hour. Only after ruling out every possible case after that, my doctor threw up his hands and asked me how many times a day I orgasm. His mouth was agape when I said 3-5 times due to covid.

Apparently, the muscles involved in orgasm don't strengthen from orgasm... only fatigue. So, from orgasming that many times a day, the muscles spasm, inflame, and swell, causing urethritis (inflamed urethra), orchitis (inflamed testicles), lower back pain, and painful urination because the orgasm muscles wrap around your BLADDER and when SWOLLEN can prevent you from fully emptying your urinary tract.

Here I am, for two months scared I had some horrible prostate problem that would plague me my whole life, or some sort of chronic bladder condition, but no. I simply jack it way too much because I'm bored at home all day. Two months of suffering for that. All I had to do was stop masturbating and start stretching my pelvic muscles, and a week later I feel entirely normal again.

Because not much is known about CPPS, this is the only thing I could find online to back me up so I don't seem like I'm spewing shit. https://www.insyncmedical.sg/pelvic-pain-excessive-masturbation/ also Mens Health published an article in the last month how the pandemic is causing a huge increase in men going to the doctors for Chronic Pelvic Pain. Sitting too much + stress + excessive masturbation is causing serious pelvic health issues in men.

Learn from my mistakes!

TL;DR Excessive masturbation can cause CPPS.

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๐Ÿ‘ค︎ u/FourStringedViking
๐Ÿ“…︎ Apr 14 2021
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"Telehealth appointments aren't available for chronic pelvic pain patients"

I live in the rural northern US and have to drive four hours one way to see a chronic pelvic pain specialist. None of the gynecologists in my area know how to properly treat endo symptoms other than with ablation and birth control. I chose this doctor over an excision specialist because the closest surgeon to me is nine hours away and I don't have enough sick leave saved up at my job to have excision surgery (because I'm always out sick due to my chronic pain...)

I had my first appointment with her in January and she switched my birth control and sent me to pelvic floor therapy, both of which have actually helped with my pain a lot. It's still around though. When I scheduled my follow-up appointment she said it could be a telehealth appointment since I live so far away.

I got the appointment reminder call this week and it sounded like it was going to be an in-person appointment so I called the clinic to explain its supposed to be a telehealth appointment due to the time it takes for me to get to the clinic. The response I got from the receptionist was "Oh, telehealth appointments aren't available to chronic pelvic pain patients right now."

Like, what? Does no one at this clinic/hospital realize how massively stupid that policy sounds and is in practice? Making a chronic pelvic pain patient spend hours SITTING in a car just so I can tell her I'm feeling a little better but still in chronic pain? One of my coworkers goes to the same hospital (different "clinic") for Crohn's and all his appointments are telehealth. The lengths we have to go just to MANAGE our symptoms, not even treat them, is absolutely absurd and I am livid right now.

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๐Ÿ‘ค︎ u/PlantLady21
๐Ÿ“…︎ Apr 28 2021
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Hope for those who still question whats going on. Chronic pelvic pain part 1 of 3 Jason kutch PhD. March 11, 2021

https://youtu.be/5zXwcpSCROA

I didnt do any timestamps for fhis video. Everything I've written was jotted down as I watched it. Watch it for yourself and see what you can gather but these were the key points I heard.

here it begins

A biokinesiology major at the university of southern California

He is developing imaging at for neuromuscular imaging to see the relation between brain and network mechanisms of altered pelvic floor muscle control.

Publishing the world's first neuroimaging study comparing men with cpps and healthy men. There is a huge difference in brain function and motor control of the pelvic floor of these groups.

Jason kutch PhD. Got cpps from excessive bike commuting.His field of study and research is how brain controls muscles and movements.

Jason kutch questions the bacterial infection rates for prostatis. He cites Curtis Nickel, M.D.The 95% muscular vs 5% bacterial rule is substantiated. Long term antibiotics therapy is ineffective and dangerous.

Chronic pelvic pain is a psychonerumuscular disorder of a strained pelvic floor from physical trauama that has lost its ability to relax. Loss of motor control is the biggest problem.

Approximately 70% of Pelvic pain patients exhibit post ejaculatory pain, sexual dysfunction, isolatio, golfball in the rectum pain. Normal activities like sports and sex became painful.

EVERYTIME you masturbate or ejaculate with cpps it's like playing hop scotch on a broken leg. Post ejaculatory pain.

They are conducting studies at his university in bc California and at the NIH in Bethesda maryland.He holds neuroimaging groups at his college.

He states chronic pain changes your brain function.

CENTRAL SENSITIZATION. A Hyperexcitability and inability to process messages from the peripherary to the spinal cord. This sensitizing other tissues connected to the pelvic floor. Uncontrolled excessive pelvic floor muscle activity creates pelvic pain symptoms.

THEY HAVE BEEN RUNNING STUDIES ON MEN WITH CPPS SINCE 2008. Some of the younger members were just turning 6 years old at this time.

https://profiles.sc-ctsi.org/jason.kutch

Jason kutch PhD faculty profile associate professor contact

  • (323) 442 2932
  • (323) 442 5550
  • Kutch@pt.usc.edu
  • Kutch@usc.edu

some of his published work

Understanding brain and spinal cord networks controlling muscle fibers with neuroimaging, electrophysiology, and mathematical models; optimizing rehabilitation for restoring normal contr

... keep reading on reddit โžก

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๐Ÿ‘ค︎ u/MusculoskeletalPain
๐Ÿ“…︎ Mar 21 2021
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Does Flomax Help For Chronic Pelvic Pain?

Hey all,

I am dealing with a lot of genital pain after being exposed to Mycoplasma Genitalium in 2019. I last tested positive for Mgen on December 14, 2020. I have since tested (with different labs) negative at least a dozen times (I was going weekly and submitting urine and swab samples) this year but the genital pain continues daily and frequently, particularly when sitting. No antibiotic use since September 2019. My genital pain seems to be the same as when I was testing positive for Mgen (September 2019 through December 2020). I regularly experience pinching/stinging type pain in my prostate/pubic bone area, urethra, scrotum, and inner thighs -- it's like my nerves in the genital area have all gone haywire! On the outside, it all looks normal but on the inside, it feels red, angry, and inflamed. Exercise seems to help somewhat. No issues with urination, although sometimes I feel a little bit of burning in the urethra, but no discharge. Rarely, I have sharp pains in my rectum. I use copious amounts of herbal products and supplements, particularly in the past 4 months. I am doing pelvic floor therapy with minimal improvement. My doctor suggested Flomax/Tamsulosin and I am wondering if this medication will help me to relax the prostate and decrease my genital pain. Does anyone here use Flomax for Chronic Pelvic Pain? If so, does it help? Any responses about Flomax or other helpful therapies would be greatly appreciated.

Thank you for reading!

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๐Ÿ‘ค︎ u/anderson9472
๐Ÿ“…︎ Apr 19 2021
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I interviewed leading Cleveland Clinic urologist Dr Daniel Shoskes on all things chronic pelvic pain syndrome
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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Mar 25 2021
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Need pelvic ultrasound for ovarian cysts after chronic debilitating pain but can't get tested bc fear of mental eval - help needed.

Hi everyone. I am hoping you can help me and one of my close friends who has suffered for many years from chronic pain. The situation is a little complicated so let me explain.

When her periods come she can get severe pain on lower back and thighs to to the point she can't work. She also can get hip pain intermittently. This suffering has gone on for years and has now gotten worse to where she can"t run or do her gym classes.

In top of this she is a single mom domestic violence survivor. Her ex husband is taking financial advantage of her around the divorce settlement but her response has been to blame herself and work harder. She is chronically exhausted stressed because of the situation and feels very disempowered.

A few years ago she got a university fellowship and is now working on her PhD in economics. She was grateful for the increase in income because as a single mom taken advantage of by her hex she had been receiving govt assistance food stamps and medicare.

However her school position teaching meant her income increased and she is no longer eligible for medical insurance. She had gone to a doctor before starting her new position and the doctor had said that her chronic pain fit the profile for ovarian cysts. I just googled this and yes ovarian cysts can vary with your period and pressure the spine causing extreme pain - her symptoms match the online info I found. The doctor recommended tests for the cysts, but because her insurance situation changed the stopped seeing her and the former clinic discharged her as a patient.

She does have new insurance as a student under her new work fellowship and PhD program at the university. However here is the problem: the university clinic has terrified her with a threat of involuntary psychiatry commitment.

Several years ago she had an epilepsy related psychotic episode and received psychiatric care. She has zero psychotic symptoms since then. But when she goes to the university clinic they told her she had to answer a mental health questionnaire with their clinician and when she asked if that could result in involuntary hospitalization they responded yes. She was told the mental health exam is mandatory if she wants to receive care at the clinic. When she tells them that she has chronic pain and her previous doctor recommended testing for ovarian cysts they ignore her and believe her chronic pain is part of her mental illness instead and tell her she needs the mental evaluation. They said the ment

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๐Ÿ‘ค︎ u/RelaxedWanderer
๐Ÿ“…︎ Mar 28 2021
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Chronic pelvic pain 29yo male - plz read and suggest how to help

Hi all.

I am a single 29 year old otherwise healthy male not taking any daily medications etc. 6โ€™1 and weigh about 180. For about three years I have been feeling sometimes stabbing sometimes jolting pain in my perineal nerve. After going to my urologist about 7 times and having ever test / scan completed, nothing is anatomically wrong. He he diagnosed me chronic regional pain syndrome and perineal pain. The issue causes me pain every single day no doubt. My urologist referred to pain management. I went and immediately got the nerve shots in my spine which the doctor said would make my whole pelvic area numb. The injections do not work in the slightest. Iโ€™m not looking for drugs here physicians of Reddit, but what the hell should I do from here? Any advice please let me know.

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๐Ÿ“…︎ Apr 05 2021
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Effectiveness of diet, sexual habits and lifestyle modifications on treatment of chronic pelvic pain syndrome

A good read, make sure you arenโ€™t doing these things if you are trying to recover. https://www.nature.com/articles/pcan201418

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๐Ÿ‘ค︎ u/poofycade
๐Ÿ“…︎ Jan 17 2021
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Clarification of prostatitis chronic pelvic pain syndrome. March 18, 2021. Joshua Gonzalez M.D. 95% / 5% rule ALWAYS APPLIES

https://youtu.be/2ahFrNVyIfA

Yet another video this time from a urologists. He says the same basic things that have been know for two decades. Stay away from spicey foods, alcohol. He mentions that most cases are muscular in pathology and that acute bacterial prostatitis is very rare. Run tests. Check urine. Prostate fluid. Send them to a pelvic floor therapist.

95% non bacterial prostatitis

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๐Ÿ‘ค︎ u/MusculoskeletalPain
๐Ÿ“…︎ Mar 21 2021
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Chronic pelvic pain after dilation

So i had a dviu and 2 years later i started having pain.its been 5 years now and i still have the pain.it gets worse with urination My flow is acceptable though.idid a balloon dilation under anesthesia and they didnt keep the video for me even though i told them to and no difference in pain

I dont want to go urethroplasty because of the complications,and i dont want to do another dviu as it can make the scarring worse.

I wish this was my only problem,i also have ocd and had a psychotic episode this past november im only 23 years old, how bad could this life be? I feel like Im cursed.i feel that my parents are ashamed of me. I thhink i shouldnt be alive

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๐Ÿ‘ค︎ u/Tall-Hat9117
๐Ÿ“…︎ Mar 20 2021
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Study: Cannabis Products Effective in Self-Management of Chronic Pelvic Pain - NORML (I know cannabis doesnโ€™t help everyone but wanted to share this new study) google.com/amp/s/norml.orโ€ฆ
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๐Ÿ‘ค︎ u/susandeschain9
๐Ÿ“…︎ Dec 11 2020
๐Ÿšจ︎ report
"Corpus cavernosum smooth muscle cell dysfunction and phenotype transformation are related to erectile dysfunction in prostatitis rats with chronic prostatitis/chronic pelvic pain syndrome" RESEARCH

Background

The relationship between chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) and erectile dysfunction (ED) has been shown in many studies. However, the specific mechanism remains unclear. This study was to investigate the corpus cavernosum smooth muscle cell function and phenotype transformation in Experimental autoimmune prostatitis (EAP) rats.

Methods

EAP was induced in rats by using prostate protein supplemented with immuneadjuvant extraction, and the max-ICP and MAP were measured. IHC and Masson staining were done to assess inflammatory infiltration and collagen deposition in the corpus cavernosum, respectively. Subsequently, normal rat and EAP rat CCSMCs were purified by tissue block implantation and differential adherence method. The oxidative stress, smooth muscle phenotype transformation, cell cycle and intracellular calcium ion transport were also evaluated.

Results

The ratio of max ICP/MAP in EAP rats significantly reduced, and the TNF-ฮฑ content and collagen deposition in the corpus cavernosum markedly increased as compared to healthy rats. High-purity rat CCSMCs were obtained. Oxidative stress was evident and the cGMP content decreased in the EAP rat CCSMCs. The expression of Cav1.2, IP3R1 and RyR2 increased, but the SERCA2 expression decreased in EAP rat CCSMCs, which was accompanied by increased intracellular calcium. Increased expression of OPN, collagen and KCa3.1, decreased Calponin expression and increased proportion of cells in the S phase were also observed in the EAP rat CCSMCs.

Conclusion

CP causes oxidative stress and imbalance of intracellular calcium in CCSMCs and promotes CCSMCs transformation from contractile to synthetic state, which may be involved in the pathogenesis of ED.

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๐Ÿ‘ค︎ u/canserbero4ever
๐Ÿ“…︎ Jan 28 2021
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Ketamine is the only substance I've found that helps with my chronic illness symptoms but the first treatment caused severe pelvic pain. Are there alternatives that don't have the same side effects?

I've been dealing with a complex chronic illness since 2013 and had my first IV ketamine treatment for chronic pain a little over two weeks ago. The positive effects from it were absolutely amazing. Tension that I've had since 2015 began to release, I regained feeling in my hands and feet again, my mood improved and much more. However, and this is a HUGE however, it caused severe burning pain in my pelvis which hasn't fully subsided yet. The pain has been so severe that I can't possibly see myself attempting another treatment.

Are there alternatives to ketamine that work on similar parts of the brain that don't have these same crazy side effects? I'm looking into microdosing but understand these substances typically operate on other receptors.

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๐Ÿ‘ค︎ u/US_vs_Them
๐Ÿ“…︎ Jan 25 2021
๐Ÿšจ︎ report
Edging/masturbation has given me Chronic pelvic pain syndrome.

I had a very big edging session last week and I haven't been the same since.. started with constant urination with a burning feeling to now having pain in my pelvic region and aches in my testicles.. im completely embarrassed and honestly scared I did damage to myself permanently. Is there anyone out there who can pls help me with advice on how to recover?? Has this ever happened to any other males out there?

I'm really in a dark place and need some guidance

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๐Ÿ‘ค︎ u/Lost_Frequency87
๐Ÿ“…︎ Dec 31 2020
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Please help me, I can't manage my chronic pelvic pain

details: 21F, undiagnosed for 4 years, despite the opinion of 2 GP surgeries and a gynaecologist. I get pelvic pain every single day, but it's a lot worse at night. Paracetamol doesn't seem to help, codeine seems to make it worse, and ibuprofen was helping but now I'm taking it every day and it doesn't seem to be helping as well (and its probably causing some stomach damage)

I have an appointment with a new doctor on Monday, but lord please help me get through the weekend. I'm in agony. Does anyone have any tips?

It fucks up my sleep so bad. I'm tired all through work. I just need help to ease the pain

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๐Ÿ‘ค︎ u/draaj
๐Ÿ“…︎ Jan 08 2021
๐Ÿšจ︎ report
For those with chronic pelvic pain hard flaccid. It is both a muscular and nerve issue.

For the traumatic chronic pelvic pain sufferers with hard flaccid. Jelqer, kegeler, masturbator.

The traumatic event causes the pelvic floor to go into a permanent contraction. It is ALL the muscles, not just the ischiocavernosus.

Postural or gait abnormalities, skeletal asymmetry, and prolonged sitting may trigger symptoms in some individuals. Because the lower extremity, hip, abdomen, pelvis, and spine are a connected kinetic chain, any dysfunction along this chain may cause overcompensation and dysfunction of other associated muscles.20,21ย A recent, small, blinded, prospective study of women with chronic pelvic pain showed a higher frequency of abnormal pelvic musculoskeletal findings (eg, asymmetric iliac crests) in those with pelvic pain compared with controls.21

Several recent studies have demonstrated neural โ€œcross-talkโ€ between pelvic organs, which, while necessary for normal physiologic regulation of bowel, bladder, and sexual function, may explain why shared painful symptoms of the rectum, bladder, and pelvic and adnexal structures might develop.16-18ย The underlying mechanism for this phenomenon is poorly understood, but it may be mediated by the peripheral and central nervous systems.19

Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction

Digital palpation of the pelvic floor muscles is used to assess contraction and relaxation and to evaluate pain. External palpation of the urogenital triangle (Figure) includes the ischiocavernosus, bulbospongiosus, and transverse perineal muscles and the perineal body. Assessment of muscle tension and tenderness of the urogenital triangle is especially important in women with dyspareunia.

The deeper muscles include the pubococcygeus, puborectalis, and iliococcygeus, known together as the levator ani, and the obturator internus on the lateral pelvic wall (Figure). Pelvic floor muscles are assessed for tenderness, tone, contraction, and relaxation through vaginal and rectal digital palpation.30ย The strength of a pelvic floor contraction can be classified subjectively as absent, weak, normal, or strong after asking the woman to squeeze around the palpating finger. Relaxation is assessed after attempted voluntary

After the traumatic event it sets up a pain experience that persists long after the initial stimulus is gone. Hence chronic pelvic pain.

Consistent with clinical experience, a meta-analysis showed a significant association between sexual abuse and a lifetime diagn

... keep reading on reddit โžก

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๐Ÿ‘ค︎ u/MusculoskeletalPain
๐Ÿ“…︎ Nov 13 2020
๐Ÿšจ︎ report
Community building event for people with vaginal pain / pain with sex / chronic UTIs / pelvic floor dysfunction

Hey all! We at Tight Lipped are hosting a community building event on Sunday, January 24th from 3-4:30 EST!

This event will be an opportunity for people with vulvovaginal pain conditions to come together, hear authors share their pieces from our zine (Opening Up), and learn more about how to get involved.

More info + RSVP Here! (this is a free event)

This event is for you if you've ever said...

โ€œIt feels like I have a UTI all the timeโ€

โ€œSex hurtsโ€

โ€œIโ€™m scared to go back to the gynecologist because pelvic exams are so painfulโ€

โ€œMy vulva is constantly stingingโ€

โ€œIt feels like my vulva is on fireโ€

โ€œWhen I try to put in a tampon or have penetrative sex, itโ€™s like thereโ€™s a wall preventing anything from going in.โ€

โ€œWhen I got my pap smear, it hurt so bad I thought I might cry or faintโ€

โ€œI feel like every time I wear tight pants, I get this burning sensationโ€

https://preview.redd.it/3ll0g4hbtya61.jpg?width=1656&format=pjpg&auto=webp&s=475e4cac6a1acb8a2ce25ee2b6f10a138072bf2c

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๐Ÿ‘ค︎ u/TightLippedPod
๐Ÿ“…︎ Jan 12 2021
๐Ÿšจ︎ report
Chronic pelvic pain - ovarian cyst?

Hi there,

So Iโ€™m dealing with an unusual problem and even my doctor seems a bit stumped. Hereโ€™s the gist of it.

For the last year, every few months Iโ€™ll get some severe pelvic pain. It seems to go away with antibiotics to treat UTIs but itโ€™s not a UTI. Numerous UTI tests come back negative and itโ€™s also not in the same place as a UTI nor is it associated with urinating (thereโ€™s some discomfort upon urinating but not from the urethra). My old doctor just threw the antibiotics at it because they couldnโ€™t find anything else. My new doctor actually wants to find a cause. I just want the pain to stop.

A few notes.

  1. I had an intrauterine ultrasound last year when it started, to check that my IUD was still in place. It was. They noticed one ovary was slightly larger than the other, but no sign of a cyst. However, the size difference was likely from an ovarian cyst according to them. During this appointment, the speculum caused serious discomfort and pain.

  2. in April, I had a fever with it. Maybe it wasnโ€™t related, but it seemed to be. I couldnโ€™t get the fever down and I was in severe pain so I went to the ER. They did a CT scan and found nothing (full body since they were also checking my lungs, I have interstitial lung disease on top of it all and they suspected Covid even though I told them it was gynecological. Big mess)

  3. Last time I had problems, in September, I was treated for BV but then had symptoms of a UTI even after so they treated me for a UTI and I got better. I tested positive for BV even though I did not have discharge or any other symptoms besides pelvic pain.

Iโ€™ve had it in February, April, September and now December. Antibiotics got rid of it every other time, though my doctor wonders if it would have went away in its own

  1. currently, the pain is on the left side. It started off a lot worse and actually got better, but it feels to be getting worse again after my exam. Thereโ€™s a feeling of fullness at times, and just a constant pain that sometimes sends shooting pains down my pelvis. When my bladder has anything in it, itโ€™s even more uncomfortable and urinating is uncomfortable too, but only because it feels like Iโ€™m putting pressure on the area when I do it. When my doctor did an exam two days ago, the speculum didnโ€™t hurt like the episode a year ago, but there was pain inside my vagina on the left side when she was examining.

I will have another intrauterine ultrasound on Tuesday but Iโ€™m not convinced theyโ€™ll find anythin

... keep reading on reddit โžก

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๐Ÿ‘ค︎ u/Secretlysidhe
๐Ÿ“…︎ Dec 18 2020
๐Ÿšจ︎ report
Chronic Pelvic Pain, when am I going to be able to masturbate again without pain?

I have been suffering from chronic pelvic pain for several months.
I have tested many things and I figured out that my symptoms (lower abdomen/pelvic and/or anal discomfort and burning pain and/or frequent urination), are triggered almost every time by masturbation (I am not sure about sex, I have had sex only for 4 consecutive days during this period and my symptoms weren't triggered).
The only thing left for me is to abstain from masturbation, which make my symptoms disappear after some days, usually less than a week if coupled with stretching (but I am not sure about the role of stretching, can someone write his experience regarding that?).
At the moment I am taking 2 supplements, which contain mainly palmitoylethanloamide, serenoa repens and quercetine.

I'd like some suggestions and I would like to know how you defeated, once and for all, chronic pelvic pain. Thanks

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๐Ÿ‘ค︎ u/vavvo966
๐Ÿ“…︎ Nov 25 2020
๐Ÿšจ︎ report
23 y/o Male with chronic prostatitis/pelvic floor issues -- but without enlarged prostate (also, PAINFUL cystoscopy?!)

First of all, very thankful for this community and anyone who takes the time to read and respond to this post. You've all made me more hopeful.

I'm 23 and first started having symptoms in November of 2020. I first noticed that my stream was weaker than normal, then it became very difficult to start and end urination. That's when I first saw a Dr. I'm going to first list out my symptoms and then get to the brief story.

  • increased urination frequency and urgency
  • very weak urine streams
  • difficulty starting and finishing urination
  • weak erections AND weak ejaculation
  • tightness in pelvic floor
  • sensation that I always have to pee/pee is "trapped" inside my urethra
  • discomfort in urethra, especially near tip
  • low libido

Was given two different antibiotics, one I can't remember for 14 days and then Bactrim for a month. Neither helped. That was late 2020.

I went to a urologist who did a urine culture (nothing), a prostate exam (this is what's interesting -- he said my prostate was *not inflamed*), and a cystoscopy (nothing).

That's when the Dr. said it was likely chronic prostatitis, but after reading some other users posts, I'm a bit confused by a few things. I apparently do not have an enlarged prostate, but i guess that could just mean it's more of a pelvic floor issue than directly prostatitis?

Also -- and this is very concerning to me after reading other users posts -- I had a quick but VERY, VERY sharp pain during my cystoscopy. It wans't just when the scope went in, it was when they put the numbing liquid inside as well. It was a VERY sharp burning/stinging. In fact, I was given some type of "laughing gas" but still had such pain that I jerked my body around on the table. The Dr. said that it as because the scope was entering the sphincter, which can be very tight in these cases, but it also stung when the numbing gel was placed inside?

I've begun deep stretching/massaging the area, but nothing seems to be helping. I also cut out alcohol and weed a week ago. Any insight anyone can offer would be really helpful, especially about the pain I felt with the cystoscopy.

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๐Ÿ‘ค︎ u/dickwhitman7
๐Ÿ“…︎ Apr 17 2021
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Trying the drug Kratom, contemplating suicide and getting laughed at by urologists...my chat with a chronic pelvic pain sufferer

Shout out to Kolton from Yakima, Washington for sharing his story about CPPS/prostatitis and helping to bring more awareness to the condition. ๐ŸŽ™๐Ÿ—ฃ

Chat with fellow chronic pelvic pain sufferer

Very brave and helpful for those men out there suffering in silence. ๐Ÿ™Œ

If you want to tell your story about living with chronic pain get in touch! sesmith01@gmail.com

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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Jan 06 2021
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Chronic Pelvic Pain. If anyone is interested in the article, I can send you a PDF.

Review Article

The Use of Botulinum Toxin in the Pelvic Floor for Women with Chronic Pelvic Painโ€“A New Answer to Old Problems?

Jason Abbott, B. Med (Hons), MRCOG, FRANZCOG, PhD* From The School of Womenโ€™s and Childrenโ€™s Health, University of New South Wales, Sydney, Australia.

ABSTRACT

Chronic pelvic pain occurs in about 15% of women and has a variety of causes requiring accurate diagnosis and appropriate treatment if pain reduction is to be effected. Superficial conditions such as provoked vestibulodynia and deeper pelvic issues such as pelvic floor myalgia were traditionally difficult to diagnose and adequately treat. For provoked vestibulodynia, there are limited data, in the form of case reports and small series, to indicate that botulinum toxin (BoNT) injections may provide shortterm (3โ€“6 months) benefit. Retreatment is reported to be successful and side effects are few. Class-I studies are essential to adequately assess this form of treatment. For pelvic floor myalgia, 1 class-I study and 3 class-II to -III studies indicate efficacy of BoNT. In the only double-blind, randomized, controlled study, significant reduction in pelvic floor pressures with significant pain reduction for some types of pelvic pain are reported compared with baseline. No differences in pain occurred compared with the control group who had physical therapy as an intervention. Physical therapy should be used as a noninvasive first-line treatment, with BoNT injections reserved for those who are refractory to treatment. Pelvic floor disorders should be considered as a cause for chronic pelvic pain in women and an attempt made to diagnose and treat such problems as a routine practice. The use of BoNT as a therapeutic option for pelvic floor muscle spasm and pain is still in its infancy. Initial reports suggest that there may be a significant role for women with chronic pain that is refractory to currently available medical and surgical treatments, however, there are very few high-quality studies and research is essential before this novel treatment can be accepted into widespread use for pelvic pain attributable to the pelvic floor. Journal of Minimally Invasive Gynecology (2009) 16, 130โ€“135 2009 AAGL. All rights reserved.

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๐Ÿ‘ค︎ u/Dru-AZCCPP
๐Ÿ“…︎ Jan 11 2021
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I'll be having a Facebook Live chat with a fellow chronic male pelvic pain sufferer. Join in, ask questions, have a beer, show support, feel less alone.
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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Dec 23 2020
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I interviewed one of the UK's leading specialists on treating male chronic pelvic pain
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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Oct 18 2020
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Candid Chat With A Fellow Chronic Male Pelvic Pain Sufferer...

I had an informative and revealing chat with personal health coach Brendan Turner. He spoke candidly about finding blood in his semen, how CBD oil helps with anxiety and the pelvic muscle that's to blame for his symptoms.

Lots of respect and support for any guy willing to speak openly about his CPPS symptoms. ๐Ÿ™Œ

COAPS #10 - Brendan Turner

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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Dec 28 2020
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My article for a national UK magazine on the latest developments in chronic prostatitis/male pelvic pain. I'm keeping on trying to raise awareness. ๐Ÿ™Œ๐Ÿป
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๐Ÿ‘ค︎ u/ProstatitisDiaries
๐Ÿ“…︎ Oct 21 2020
๐Ÿšจ︎ report
Appreciation Post: My best friend is altering her wedding to accommodate to my chronic pelvic pain.

Iโ€™m part of my best friendโ€™s wedding in July- With covid, she and her fiancรฉ have changed so many plans and altered the wedding 1000x. With all of this covid fiasco craziness that comes with planning a wedding, she always incorporates me and my disability into the plans.

Side note: I am recently diagnosed by my obgyn with moderate to severe chronic pelvic congestion syndrome, the beginning stages of Endo, and waiting to see an endovascular specialist. The wait time is lengthy (5-18 months). Iโ€™ve only been diagnosed with these condition for 10 months, trying to figure out what my body is still capable of - walking far or standing for periods of time isnโ€™t one of them.

Anywho, back to the wedding- as I wonโ€™t be able to walk far, and reclining or laying down is my best friend, sheโ€™s ensuring I have mobility aid, places to rest, etc. She even said โ€œif we have to carry you down the aisle and youโ€™re lounging at the alter, we will do just that.โ€

This is my best friendโ€™s special day- not my day. However, she is making sure my day is as wonderful as herโ€™s.

Im just so thankful and hope my fellow endo community has friends like mine.

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๐Ÿ‘ค︎ u/MissyVein
๐Ÿ“…︎ Apr 28 2021
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Clarificiation for chronic pelvic pain syndrome and prostatitis. 95% non bacterial prostatitis yet again substantiated. Chronic pelvic pain part 1 of 3 Jason kutch PhD. March 11, 2021

https://youtu.be/5zXwcpSCROA

I didnt do any timestamps for fhis video. Everything I've written was jotted down as I watched it. Watch it for yourself and see what you can gather but these were the key points I heard.

here it begins

A biokinesiology major at the university of southern California

He is developing imaging at for neuromuscular imaging to see the relation between brain and network mechanisms of altered pelvic floor muscle control.

Publishing the world's first neuroimaging study comparing men with cpps and healthy men. There is a huge difference in brain function and motor control of the pelvic floor of these groups.

Jason kutch PhD. Got cpps from excessive bike commuting.His field of study and research is how brain controls muscles and movements.

Jason kutch questions the bacterial infection rates for prostatis. He cites Curtis Nicke, M.d.The 95% muscular vs 5% bacterial rule substantiated. Long term antibiotics therapy is ineffective and dangerous.

Chronic pelvic pain is a psychonerumuscular disorder of a strained pelvic floor from physical trauama that has lost its ability to relax. Loss of motor control is the biggest.

Approximately 70% of Pelvic pain patients exhibit post ejaculatory pain, sexual dysfunction, isolation. Normal activities like sports and sex became painful.

EVERYTIME you masturbate or ejaculate with cpps it's like playing hop scotch on a broken leg.

They are conducting studies at his university in bc California and at the NIH in Bethesda maryland.He holds neuroimaging groups at his college.

He states chronic pain changes your brain function.

CENTRAL SENSITIZATION. A Hyperexcitability and inability to process messages from the peripherary to the spinal cord. This sensitizing other tissues connected to the pelvic floor. Uncontrolled excessive pelvic floor muscle activity creates pelvic pain symptoms.

THEY HAVE BEEN RUNNING STUDIES ON CPPS SINCE 2008. Some of the younger members were just turning 6 years old at this time.

https://profiles.sc-ctsi.org/jason.kutch

Jason kutch PhD faculty profile associate professor contact (323) 442 2932 (323) 442 5550 Kutch@pt.usc.edu Kutch@usc.edu

Understanding brain and spinal cord networks controlling muscle fibers with neuroimaging, electrophysiology, and mathematical models; optimizing rehabilitation for restoring normal control of muscle in individuals with chronic pain.

Impact of early adverse life events and sex on functional brain netw

... keep reading on reddit โžก

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๐Ÿ‘ค︎ u/MusculoskeletalPain
๐Ÿ“…︎ Mar 21 2021
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Community building event for people with vaginal/vulvar/pelvic pain / pain with sex / chronic UTIs

Hey all! We at Tight Lipped are hosting a community building event on Sunday, January 24th from 3-4:30 EST!

This event will be an opportunity for people with vulvovaginal pain conditions to come together, hear authors share their pieces from our zine (Opening Up), and learn more about how to get involved.

More info + RSVP Here! (this is a free event)

This event is for you if you've ever said...

โ€œIt feels like I have a UTI all the timeโ€

โ€œSex hurtsโ€

โ€œIโ€™m scared to go back to the gynecologist because pelvic exams are so painfulโ€

โ€œMy vulva is constantly stingingโ€

โ€œIt feels like my vulva is on fireโ€

โ€œWhen I try to put in a tampon or have penetrative sex, itโ€™s like thereโ€™s a wall preventing anything from going in.โ€

โ€œWhen I got my pap smear, it hurt so bad I thought I might cry or faintโ€

โ€œI feel like every time I wear tight pants, I get this burning sensationโ€

https://preview.redd.it/cnc0avbitya61.jpg?width=1656&format=pjpg&auto=webp&s=2999419c7909bb2cf6ea04fcd250d582d08a8174

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๐Ÿ‘ค︎ u/TightLippedPod
๐Ÿ“…︎ Jan 12 2021
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