"Let's talk about sex baby, let's talk about you and me …"- How you can be allergic to semen and how it relates to Mast Cell Activation Syndrome (MCAS) and Ehlers-Danlos Syndrome (EDS)

“Let’s talk about sex baby, let’s talk about you and me. Let’s talk about all the good things and the bad things that may be…..”

Let’s also talk about how you can be allergic to semen – The Human Seminal Protein Allergy (HSPA) and how it relates to Mast Cell Activation Syndrome (MCAS) and Ehlers-Danlos Syndrome (EDS)

Did you know that you can be allergic to semen?
The actual medical term is called “The Human Seminal Protein Allergy,” or HSPA for short – and it’s far from rare. In fact, my guess is that it’s even more common than current estimates.
HSPA is thought to be linked to infertility, chronic pelvic pain in women, and is often misdiagnosed as other chronic pelvic pain conditions, because who thinks that he/she would be allergic to semen? Similarly, most physicians do not assess a patient for a semen allergy, if a patient comes in complaining of chronic pelvic pain.
Interestingly, the allergy usually only affects mucosal surfaces, and it does not cause the same reaction on all mucosal surfaces – meaning a reaction in your mouth or on your lips, may not be the same as a reaction in your pelvic region. Similarly, you will mostly likely not have an allergic reaction if semen touches your skin because the skin is not a mucosal surface.
The HSPA allergy also does not always cause anaphylaxis. It was also different from someone having an allergic reaction to heat, sweat, or even the activity of sex. HSPA is often misdiagnosed as a reaction to the act of having sex when the actual allergy is caused by the mucosal surface of the vagina, labia, or other mucosal body surface coming in contact with semen. It is entirely possible that someone could be allergic to both semen and to certain “triggers” that go along with having sex – heat, friction, sweat, etc.
When you have HSPA, symptoms can be typical allergy-like reactions — itching, swelling, hives, etc.; however, contrary to what this article states, pain and swelling of the pelvic/abdominal cavity are quite common, and it can be incredibly debilitating. The pain that can come with HSPA is varied and often more than one type of pain. HSPA can flare pain from Interstitial Cystitis (a painful bladder syndrome), as well as other pelvic pain conditions and musculoskeletal pain from conditions such as fibromyalgia.

What’s the missing link and how is can HSPA be related to Ehlers-Danlos syndrome?
The reason is because HSPA is a condition thought to be caused by overly reactive mast cells. Furthermore, overly reactive mast cells are often the result of a type of mast cell disorder, such as Mast Cell Activation Syndrome (MCAS). The association between MCAS and EDS has been more than proven, and for many women with both conditions, the additional diagnosis of various chronic pelvic pain conditions is quite common. A few conditions that cause Chronic Pelvic Pain (CPP) are IC, HSPA, Vulvadynia, Endometriosis, Adenomyosis, pelvic congestion syndrome, pudendal neuralgia and more. Most women who suffer from chronic pelvic pain, are often diagnosed with a varied collection of other chronic conditions, such as: musculoskeletal conditions, auto-immune conditions, thyroid and endocrine disorders, arthritis, GI issues, allergies, heart and other vascular conditions, Dysautonomia (or POTS), cognitive problems, skin conditions, food allergies, and more.
Many women who have both EDS and MCAS, including myself, often report feeling “allergic” to their hormones. Some have even been diagnosed with “estrogen intolerance” and more.
As my pelvic pain physician has always said, “These issues and conditions travel in packs.” And as more and more research comes out, three distinct key points seem very clear:

1. There are separate genetic predispositions present with many chronic, multisystemic conditions. What they are and which genetic or epigenetic mutation comes before which chronic disease or triggers it, only research will be able to tell. However, not one patient presents with the same collection of symptoms, issues, and diagnosis. Thus, emphasizing the role that epigenetics and lifestyle have in the expression of our genes – both good and bad.
2. Mast Cells are king – they may as well be called the “brain for the entire body,” because they seem to play a critical role in so many chronic conditions. They also are the link between musculoskeletal conditions, including genetic conditions, chronic pain, and immune dysfunction.

Why?
Because our mast cells are a type of white blood cell and they are our body’s first contact with allergy and inflammatory cells for our immune system. Their natural role is protective, but if they are overly reactive, too sensitive or we have too many, it can cause a Pandora’s box of issues for anyone, not to mention those of us who already have a multi-systemic condition such as EDS. When mast cells are triggered, they degranulate, releasing a ton of chemicals, such as histamine, heparin and more. The degranulation of our mast cells is pretty much the catalyst for all immune reactions – good and bad. Mast Cells are also only found in our connective tissues after they are initially made in our bone marrow. And our connective tissues are everywhere! Therefore, when your combine overly reactive mast cells and areas of the body that have too many mast cells, with the fact that mast cells are only found in our connective tissues – what do you think will happen when they are triggered and degranulate, especially too much? 

What happens is a plethora of chain reactions, stemming from the various chemicals released in our tissues and blood by our mast cells. These chemicals then cause even more chain reactions that trigger and annoy our nerves, thin our blood, decrease oxygen to our brain and much more. These reactions also trigger pain sensations to be sent to our brain from various parts of our body, including the area that was “insulted” (i.e., the vaginal area and cervix in a woman who has HSPA).
I could go into detail about what each chemical can do to our blood (thin it) and to our muscles (think meat tenderizer).
Want proof?
Go to: http://www.mastcellmaster.com and read through just a few of Dr. Theo’s research papers linking mast cell activation to countless chronic conditions, as well as cancers, autism and sensory processing disorder (SPD).

3. As another one of my physicians has often said, “These patients are not so unlucky to have been diagnosed with so many chronic conditions. Instead, the more likely explanation is that there is one underlying, broader and multi-systemic condition, caused by a genetic mutation(s) that would explain so many diagnoses in one single person.”

There’s not really another component of our connective tissues that can have such wide-spread impact on our immune function.

What’s the bottom line?
Having an allergy to semen (HSPA) is a very real, incredibly painful and devastating condition. It sucks – there’s no sugar-coating it. It’s also way underdiagnosed and often misdiagnosed for other chronic pelvic pain conditions. It also can be the cause of other chronic pelvic pain conditions, and it is usually part of a larger collection of chronic conditions that so many women suffer from, including EDS and overly reactive mast cells or Mast Cell Activation Syndrome (MCAS).
List of Chronic Pelvic Pain Conditions that *may* (or have already been) be linked to EDS and/or MCAS:

1. Pelvic congestion syndrome
2. Vulvodynia
3. Interstitial Cystitis (IC – AKA “Painful Bladder Syndrome”)
4. Ovarian Cysts
5. PCOS
6. Pelvic Floor Dysfunction
7. Adenomyosis
8. Endometriosis
9. Pudendal Neuralgia
10. Fibroids
11. Symphysis Pubis Dysfunction
12. Hemorrhoids
13. Infertility
14. Painful intercourse
15. Irregular Periods
16. Painful Periods
17. HSPA

Link to original article that was the basis for this post – https://broadly.vice.com/en_us/article/what-its-like-to-be-allergic-to-semen?utm_source=broadlytwitterus
 
Additional Article and Resources: 
Dr. Rowe’s ‘Orthostatic intolerance in EDS: More than just POTS’ (EDNF Conf, 2015)
‘Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations’ (Castori, 2012)
Dr. Rowe’s Presentation on Orthostatic Intolerance and Chronic Fatigue’  (2014)
Hypermobility Syndromes Association’s page on Bladder & Pelvic Floor Dysfunction – http://hypermobility.org/help-advice/the-bladder-pelvic-floor/
‘Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity’ – Lawrence Afrin, M.D. (2016)
Mast Cell Research’s website
EDS Wellness’ Website
Wellapalooza’s Website
‘The Sex Series’ – a nine-part series by Mast Attack on mast cell activation disorders and issues involving sex. Link specifically to part five ‘Seminal allergy, post-orgasmic illness syndrome and burning semen syndrome‘ – http://www.mastattack.org/2016/01/the-sex-series-part-five-seminal-allergy-post-orgasmic-illness-syndrome-and-burning-semen-syndrome/
‘Tragic Allergy Ruined My Marriage’ – http://www.xojane.com/healthy/tragic-allergy-ruined-my-marriage
Semen Allery by WebMD (and NO, having more sex does not help in most situations. This link is posted as FYI, because it contains outdated information) – http://www.m.webmd.com/allergies/news/20061113/semen-allergies-helped-by-frequent-sex
‘How is Sperm Allergy Treated’ – http://www.issm.info/sexual-health-qa/how-is-sperm-allergy-treated
‘What is a sperm allergy and how do I know if I have one?’ – http://www.babycenter.com/404_what-is-a-sperm-allergy-and-how-do-i-know-if-i-have-one_6150.bc