Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Medical Article

Roda

By Roda
in Introduce Yourself / Share Stuff

Recommended Posts

Roda Rising Star
Roda
Posted

I am putting this here since it has nothing to do with celiac. I was hoping for some advice, since alot of us on here do a lot of research about our own condition. I have been researching non surgical treatments for CPVPS (chronic post vasectomy pain syndrome) for the past 4 years. Last night I found an article describing IM injections of testerone for treating this. I could only find one other reference to this treatment and it described it as an "off lable use" unless there was a testerone deficiency. I will be looking into that since at one time his testerone was on the low end of normal. Here is a link to a little about our situation. He does not want to have any other surgery. I was sad one night and the kind people here helped me out. The original post was from about 6 months ago, but still applicable. He also has sperm granulomas and I'm pretty sure he has sperm antibodies(going to get tested for this too). The treatment described in the article is geared to help relieve pain( in the absence of physical causes like masses etc.), which he believes is caused from inflamation by an autoimmune reaction to the sperm(sperm either leaks out of the end of the vas deferens if an open ended techniquie was used or leaks from an epidimidal blowout thus creating the granuloma. The body sees the sperm as "foreign" and launches an immune reaction). Pain relief is obtained by supressing sperm production (makes a whole lot of sense to me). I'm sure there is nerve damage too contributing to his particular case, but maybe he could get some resoultion from the other aspect. I was wondering, would be innapropriate to try to contact the doctor who is the author of the journal article? I have two possible leads on his location. If it wouldn't be innappropriate, what would I say?

Thanks for listening.

https://www.celiac.com/gluten-free/index.ph...=58672&st=0

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

If it's from a peer reviewed journal, they usually list the contact author's email address.

Link to comment
Share on other sites
Roda Rising Star
Roda
  • Author
Posted
If it's from a peer reviewed journal, they usually list the contact author's email address.

The article does not have this. It is from Military Medicine, Jun 2007. Copyright Association of Military Surgeons of the United States June 2007. From what I can gather the author is/was a colonel in the Army. I did a general search for the name and came up with two leads one in IL and the other in NM.

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted
The article does not have this. It is from Military Medicine, Jun 2007. Copyright Association of Military Surgeons of the United States June 2007. From what I can gather the author is/was a colonel in the Army. I did a general search for the name and came up with two leads one in IL and the other in NM.

I would not hesitate to try and contact this doctor. If nothing comes of the leads try contacting the editor of the Journal. They will have contact info. I hope he is able to help.

Link to comment
Share on other sites
Roda Rising Star
Roda
  • Author
Posted
I would not hesitate to try and contact this doctor. If nothing comes of the leads try contacting the editor of the Journal. They will have contact info. I hope he is able to help.

Thanks. I think the best lead so far is in Clovis, NM. I still don't even know what to say if I contact the office. I don't want to sound stupid. I need a little help with that. Any thoughts? I know it sounds stupid, but I feel a little excited about maybe getting some more information. We really just need someone to help us and so far most doctors don't want to deal/help us. I'ts frustrating, but I know alot of you understand that frustration all to well. Here is a link the article. Maybe I missed something.

Open Original Shared Link

Link to comment
Share on other sites
Jestgar Rising Star
Jestgar
Posted

Mil Med. 2007 Jun;172(6):676-9.

The use of testosterone in the treatment of chronic postvasectomy pain syndrome: case report and review of the literature.

Pienkos EJ.

Department of Surgery, Division of Urology, Landstuhl Army Medical Center, CMR 402, Landstuhl, Germany APO AE 09180.

Open Original Shared Link

Link to comment
Share on other sites
Roda Rising Star
Roda
  • Author
Posted
Mil Med. 2007 Jun;172(6):676-9.

The use of testosterone in the treatment of chronic postvasectomy pain syndrome: case report and review of the literature.

Pienkos EJ.

Department of Surgery, Division of Urology, Landstuhl Army Medical Center, CMR 402, Landstuhl, Germany APO AE 09180.

Open Original Shared Link

Thanks. I got all of that. After more digging last night I really think the NM lead is the one to go with. I just don't know what to say and how to present myself. I guess like anything else I have done I'll just wing it. :P

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
  • Author
Posted

Woo hoo! I found him! I called an office in NM and was able to leave my name, number and why I was calling with his nurse. Unfortunately he is on vacation until Jan. 4th, but she said she would get him the message and after would call me. I was so nervous my hands were shaking. I am going to take a copy of the article over to the urologist my husband sees locally. Maybe with more information we can coordinate something here. I am actually excited. I probably shouldn't because I don't want to get my hopes up and have a big let down. We have had many of those. Another good thing is my husband has agreed to let me attend his next appointment (I will have lots to say and discuss) and I think he is finaly ready to get some counseling about this with me. So hopefully this is the beginning of something good. :)

Link to comment
Share on other sites
Jestgar Rising Star
Jestgar
Posted

Wow. Nice detecting! Hope he's got some good stuff to say.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,069
    • Most Online (within 30 mins)
      7,748
    angie78
    Newest Member
    angie78
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      This forum might be the last hope I have in my life. Please I beg you

      By knitty kitty · Posted

      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...