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Lisa Klimas

I'm a 35 year old microbiologist and molecular biologist with systemic mastocytosis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Adrenal Insufficiency, and an assortment of other chronic health issues. My life is pretty much a blast.

The Sex Series – Part Eight: Female pelvic floor dysfunction (1 of 2)

Chronic pelvic pain (CPP) in women is staggeringly common, with incidence ranging from 5.7-26.6%, depending on the study. CPP is marked by intermittent or constant pain in the lower abdomen or pelvis, lasts at least six months, and is not associated directly with menstruation, pregnancy or intercourse. Mast cells are known to be involved in the inflammatory processes of these conditions and are therefore linked to CPP.

It can be caused a wide variety of conditions that affect organs or structures in the pelvis, including endometriosis, inflammatory bowel diseases affecting the lower tract, interstitial cystitis, ovarian cysts and hypermobility type Ehlers Danlos Syndrome (HEDS).  Over half of women with CPP report chronic bladder pain, for which interstitial cystitis is a common cause.  Interstitial cystitis is widely accepted to be a mast cell mediated disease.

Despite the frequency of CPP, many exploratory surgeries to identify the cause find nothing (28-55%). Chronic pain from these conditions alters the way the sensory nerves in the pelvic cavity send signals to the spinal cord.  This in turn disrupts interpretation of pain and sensation by the nerves, creating more visceral pelvic pain.

Pelvic floor dysfunction (PFD) affects about 26% of women with CPP.  This dysfunction can cause embarrassing and disabling symptoms, including urinary and fecal incontinence. Pelvic organ prolapse occurs when organs such as the bladder move out of the correct position and impinge on other structures, such as the vagina. Pelvic organ prolapse can be called by pelvic floor dysfunction and it can cause pelvic floor dysfunction.

Sexual dysfunction affects 15-65% of PFD patients. PDF interferes with correct function of a number of muscles, including the levator ani, which hold urogenital structures in place and allow them stretch and contract during penetration and orgasm.  Patients with pelvic organ prolapse often feel a bulge pushing against the vaginal wall that interferes with vaginal penetration.  Vulvodynia, vestibulodynia, vaginismus and painful intercourse are commonly seen in PFD.

In PDF patients, muscles in the pelvic floor can be hypotonic (not tight enough), hypertonic (too tight), or have normal tone. Hypotonic dysfunction is more likely to cause incontinence, bladder symptoms and pelvic organ prolapse.  Hypertonic dysfunction is associated much more with pain and sexual dysfunction. Reduction of the high tone is necessary to reduce pain.

References:

Bortolami A, et al. Relationship between female pelvic floor dysfunction and sexual function: an observational study. J Sex Med 2015; 12: 1233-1241.

Hartmann D, Sarton J. Chronic pelvic floor dysfunction. Best Practice & Research Clinical Obstetrics and Gynaecology 2014, 28: 977-990.

Espuña-Pons M, et al. Pelvic floor symptoms and severity of pelvic organ prolapse in women seeking care for pelvic floor problems. European Journal of Obstetrics and Gynecology and Reproductive Biology 2014, 177: 141-145.

Ramalindam K, Monga A. Obesity and pelvic floor dysfunction. Best Practice and Research Clinical Obstetrics and Gynaecology 2015, 29: 541-547.

Graziottin A, et al. Mast cells in chronic inflammation, pelvic pain and depression in women. Gynecol Endocrinol 2014; 30 (7): 472-477.

Ahangari A. Prevalence of chronic pelvic pain among women: an updated review. Pain Physician 2014; 17: e141-147.

Fragility

I have a bad tooth. It needs to come out. The original plan was to have it removed in an OR so I can get twilight sedation but my insurance doesn’t want to pay for it and I’m left with having to cobble a plan together myself. I called a number of oral surgeons and no one wants to give me anesthesia outside of an OR. So any kind of general anesthesia means OR, which means a several thousand dollar bill from my insurance. No dice.

I have had dental work with local anesthetic and it’s not ideal but it’s okay. I premed heavily and then it takes a day or two to squelch reactions. It’s not super comfortable but it’s not life threatening and fortunately my laundry list of past procedures means that I have got pain management down to a science. I called my doctor and he agreed that using local sedation is fine if I premedicate. He is very good at giving advice for procedures and talking to providers that aren’t familiar with me. Great. All systems are go.

I have been a patient at my current dental office for about half of my life. I call them and they schedule me to have my tooth removed. Around this time, my dental pain went from sucky and uncomfortable to my entire face and all my teeth hurt and the pain is making me nauseous. Then the long suffering secretary at the dental office calls me to tell me that the dentist won’t remove my tooth with local anesthesia. They also won’t fill the cavity to make it more comfortable until I can figure out how to get this removed.

I talked to the dentist at length and will spare you the gory details of our exchange. I now had to find someone who didn’t know me who would agree to remove this tooth with local anesthesia quickly because the pain was awful. My entire face hurts and I’m reacting and it’s painful to talk, eat and be alive, and I’m terrified it will get infected.

The dental office at my hospital eventually agreed to do it with a local on a day when my specialist will be on campus in case anything goes wrong. In two weeks. A filling would be the same wait. So I’m getting it removed in a week and a half and while I am medicating to deal with the pain, it still hurts. It hurts a lot. I have had bowel obstructions and several surgeries and a million painful tests and good grief does this tooth hurt a lot.

I am so much better than I was a year ago. I can eat solids and exercise and travel and I’m not constantly riding the line that demarcating when I need epinephrine. I have made so much progress. But damn if it doesn’t feel like I am one bad day from losing all these gains. One bad tooth, one obstruction, one flu, one slip on an icy sidewalk. It wouldn’t take much to be right back where I was. Almost nothing.

When I have described my body as strong, it has never felt like the right word. Enduring, maybe. Durable. Not strong. Things that are strong and robust can withstand damage and still work fine.

But some things are not meant to be strong. It is not a defect, but an intricacy. A byproduct of artisanal process of craftwork. Not a mistake.

All beautiful things are fragile in some way. Marble cracks, pictures fade, buildings burn, people change. Beauty is a moment, the coalescing of so many things to form this fleeting arrangement. It is the impermanence that makes things beautiful.

My body has survived impossible things. It has recovered. But it isn’t strong, even if I want it to be, and saying that it is because of one good year feels like a lie.

Ill fit

I haven’t been posting as much of my personal writing because I am working through a lot of things.  It is hard to think about and hard to write about.  2015 was an incredible and powerful year for me, in both good and bad ways.  It seems impossible that all of the events of 2015 are bound together by time.  It was exhilarating and triumphant and horrifying and so, so costly.

I am very good at minimizing and compartmentalizing, especially when it comes to my own health.  My health care is like business for me.  The actual process of managing my physical health is stressful and difficult but it has never been the hardest part of this experience.  That hardest part is all the things I feel like I lost. No amount of struggle can force those into discrete pieces to be boxed up and pushed aside.

The loss of those things hurts more now that I am more stable and things are less emergent. I am no longer living in one continuous crisis. It has given me some distance to reflect on my life and my health and all these plans I used to have.  I used to write about them every night before I went to bed, quick notes on moving toward a goal or long essays on all the things I wanted to do.  Then I went to sleep one night and woke up the next day and none of those things ever happened and I stopped trying to make them.

I think a lot about the life I used to have.  But for the years in between, it is, in many ways, not terribly different from the life I have now.  Every day, it feels more and more like I was never the person who wrote those journal entries.  I remember her, but that’s not the same as being her.  I don’t even know when she left.  A new season, then two, and suddenly it has been seven years since that girl even existed.

I’m trying to pick up these pieces she left and recraft these dreams, to remember the way they made me feel.  I am trying to fit into the space I occupied before I got sick and I just don’t anymore. It’s like forcing something into a place it doesn’t belong, hitting it hard with the flat of your hand until it splinters and your hand hurts.  Anything can fit if you hit it hard enough, but it will never be whole again.

February 29 was Rare Disease Day.  I wanted to write something positive because I’m a very positive person and because I am hopeful and I want people to be hopeful, too. But the truth is that every sick person has been traumatized by their disease and there will always be days or hours or moments when they feel that keenly.  We can overcome and live good lives but this history follows closely and it takes very little to run your mind over it.  Sometimes it is hard to get out from under that.

I thought all day about a story that could make people understand what it means to have a rare disease, to see what I see, but I don’t think that story exists.   There is no rare disease story, just like there is no systemic mastocytosis story, or Ehlers Danlos story.

There is only my story. So that’s the one I’m telling.

The Sex Series – Part Seven: Mast cell activation and anal penetration

So far in this series, we have talked a lot about vaginally penetrating sex.  But that’s not the only way to have sex so for now, let’s move on.

Anally penetrating sex can be safe, painless and pleasurable for many people.  It is enjoyed by many partners of various sexual orientations.  The anus is an inherently different environment than the vagina and as such, preparation for and participation in anally penetrating sex is a bit different.

An obvious difference is that the anus does not self-lubricate in preparation for sex.  Use of external lubricant is HUGELY important.  Silicone based lubes are often used for anally penetrating sex because it is slicker and is not broken down as quickly by your body as water based lubricants. When selecting a lubricant, be sure to research whether components can irritate the anus and rectum.  In particular, many spermicides are very irritating to rectal tissue. Of course, in the same way that a person can react to lubricant in the vagina, you can react to lubricant in the rectum and anus.  Contact dermatitis or other types of allergic reaction can occur.

Though “vigorous anal penetration” is often considered a risk factor for anal or rectal injury, the actual incidence of these injuries is low and mostly occurs in sexual assault situations.  Injury to the sphincter musculature is unusual.  Large patient groups of gay men who engage in anal sex have been surveyed regarding issues or injuries associated with receiving anal penetration over a long period of time.  Some patients reported infrequent or “slight” incontinence, attributed by medical professionals to the inability of the anal sphincter to close as tightly in the immediate time after penetration.  However, in other studies, no patients have reported this issue.  The most frequent problem, as also seen in vaginal intercourse, is the transmission of sexually transmitted infections.  This can be mitigated by using condoms.

Anal penetration should not hurt.  The person receiving and giving should take steps to relax the anal sphincter, use adequate lubrication, and be sensitive to any pain.  Painful penetration can indicate a problem and should be taken seriously by both partners. Regardless of how an injury was acquired, anal sex can irritate any condition that affects the rectum or anus.

Hemorrhoids are blood vessels that become distended.  They can occur internally or externally, and are often painless.  The first indication of hemorrhoid is often bright red blood on toilet paper.  If a blood clot forms in the hemorrhoid, it can become very painful and swollen.  It is not entirely understood how hemorrhoids form, but straining to stool, increased pressure in the abdominal cavity, obesity and pelvic floor dysfunction are often linked to formation.

Mast cells are increased in hemorrhoid associated tissue and may affect hemorrhoid formation and resolution through release of mediators like tryptase, chymase and platelet activating factor. One study found that the number of mast cells in acute and chronic hemorrhoids is not different, indicating that mast cells can be associated throughout the lifecycle.

Fissures are tears in the anal or rectal tissue.  Fissures can be very painful, especially during and after defecation.  Fissures also cause bright red blood on the toilet paper or stool.  Patients who have fissures often have increased resting pressure when tested with anorectal manometry, meaning their muscles are more tense than usual.  Fissures can also be mast cell activating, as mast cells are active in wound healing.  Tears in the rectum and anus do not heal as quickly as those in the vagina.

Rectal itching is not unusual in allergy/mast cell patients.  Mast cells are natively present in the rectum and can degranulate in response to stimuli just like mast cells anywhere else.  Mediators released can also cause pain.  Care should be taken to reduce friction as much as possible to try to prevent degranulation from pressure.  Itching and pain can also be signs of reacting to condoms or lubricants used.

Pelvic floor dysfunction can also make anal sex painful, as the rectum and anus may not be properly supported by connective tissue.  Patients with pelvic floor dysfunction or connective tissue defects should be cautious to observe any pain or discomfort when receiving anal penetration. Pelvic floor dysfunction, and the other conditions mentioned above, can be irritated by anal penetration.

As described earlier in the series, it is possible to have an allergic reaction to semen, either due to the presence of allergens or to the composition of the semen itself. If semen enters the body during anally penetrating sex, it is possible to have an allergic reaction.  Condoms can prevent these reactions, and are also recommended to decrease risk of infection due to contact with GI flora.

 

References:

Chond PS, Bartolo DCC. Hemorrhoids and fissure in ano. Gastroenterol Clin N Am 2008, 37: 627-644.

Cawich SO, et al. Complete anal sphincter complex disruption from intercourse: A case report and literature review. International Journal of Surgery Case Reports 2012: 3, 565-568.

Zamvar V, et al. Severe anal pain caused by food allergy?: A case report. European e-Journal of Clinical Nutrition and Metabolism 2010, 5: e144-e145.

Taweevisit M, et al. Increased mast cell density in haemorrhoid venous blood vessels suggests a role in pathogenesis. Singapore Med J 2008; 49 (12): 977-979.

The Sex Series – Part Six: Male pelvic dysfunction and mast cells

Chronic pelvic pain syndrome (CPPS) affects about 15% of male patients and 90% of patients with chronic prostatitis. Patients with these conditions experience pain in the pelvis, abdomen and genitalia, as well as urinary tract symptoms without evidence of infection. Pain can be intermittent or constant, and can interfere with daily activities including sitting, standing, urination and defecation.

CPPS also causes sexual symptoms. Painful ejaculation, erectile dysfunction, and other types of ejaculation dysfunction are all common in this patient group.  In one study, 40% of patients with CPPS were found to have erectile dysfunction.  In another, 72% of patients reported either erectile dysfunction or difficulty with ejaculation.

Pelvic floor dysfunction is a component of CPPS. Many of these patients have abnormally tense pelvic floor muscles, which can cause muscle spasm and obstruct bloodflow. CPPS patients are more likely than healthy controls to have vascular dysfunction associated with nitric oxide level. In a group of 146 patients with CPPS and verified pelvic floor spasm, 56% experienced painful ejaculation.  Visceral and myofascial pain and spasm of the muscles in the pelvic floor contribute to CPPS.  While pelvic floor dysfunction has been well researched for female patients, there are far fewer studies on pelvic floor dysfunction in men.  Biofeedback and pelvic floor physical therapy can resolve issues with erectile dysfunction and other sexual issues.

IL-17, expressed by special T cells called Th17 cells, is required to develop CPPS-like conditions in animal models. IL-17 triggers mast cell degranulation and secretion of many inflammatory molecules.  A number of mast cell mediators are elevated in patients with CPPS. IL-1b, TNF, IL-6 and IL-8 are higher in seminal fluid of these patients.  CCL2 and CCL3 expression is also increased. In the prostate of animals with a CPPS model, TNF, IL-17a, IFN-γ and IL-1b are all increased.

Tryptase has been found to induce pelvic pain. Levels of tryptase and carboxypeptidase A3 are higher in CPPS patients than in healthy controls.  Tryptase binds to a receptor called PAR2.  When tryptase binds to this PAR2 receptor, it is thought that it makes nerves oversensitive. If the PAR2 receptor is blocked, pelvic pain is mitigated.  In animal models where they cannot make tryptase-like products, pelvic pain does not develop in CPPS.

Nerve growth factor (NGF) is a mast cell mediator that has been implicated in CPPS. It is elevated in seminal plasma of CPPS patients and directly correlates with pain level. It is thought that NGF makes the peripheral nerves oversensitive and causes more nerve cells than usual to be present. NGF and tryptase were elevated in prostate secretions of most CPPS patients in a small patient group. Of note, NGF release occurs and increases weeks after initial symptoms.

In animal models, injecting cetirizine (H1 antihistamine) into the peritoneal cavity decreased pain by about 13.8%; ranitidine (H2 antihistamine), 6.1%; cromolyn, 31.4%. A combination of all three decreased pain by 69.3%. When cromolyn and cetirizine were used together, larger pain relief was achieved than when used individually, but this was not seen when using ranitidine and cromolyn together.  These data suggest that H2 signaling is not a major contributor in chronic pelvic pain in male patients.

Pelvic floor dysfunction is also common in heritable connective tissue diseases and is often present in hypermobile patients.

References:

Done JD, et al. Role of mast cells in male chronic pelvic pain. Journal of Urology 2012: 187, 1473-1482.

Roman K, et al. Tryptase-PAR2 axis in experimental autoimmune prostatitis, a model for chronic pelvic pain syndrome. Pain 2014: 155 (7), 1328-1338.

Cohen D, et al. The role of pelvic floor muscles in male sexual dysfunction and pelvic pain. Sex Med Rev 2016; 4, 53-62.

Murphy SF, et al. IL17 mediates pelvic pain in experimental autoimmune prostatitis (EAP). PLoS ONE 2015, 10(5) : e0125623.

 

Degranulation station

Most of my teeth erupted later than they were supposed to, some by years. My last molars came in when I was 25. I had my wisdom teeth and three molars removed around that time. We left the one that wasn’t fully erupted. When it finally emerged, it had a cavity. My first cavity, in a place where I couldn’t brush.

In the last few years, I had more cavities, all in that same tooth. One of them was a pretty straightforward filling. The other was at the gumline and caused by acid rot from vomiting. My dentist patched it up but the placement is awkward and over time, it has fallen out and gotten bigger.

I throw up pretty regularly and take massive antihistamine doses that dry out my mouth. So it was not terribly surprising when last week, my tooth started hurting a lot. I walked down to my dentist’s office and verified that I do in fact have a huge cavity in this same tooth. Given the damage, I would need a crown to fix it, and that requires lots of strange materials in my mouth. In order to have it done by dentists who know me and my disease, it would take multiple procedures as well, and I have to premedicate heavily for each procedure.

“Or we could just pull it,” she said. That was the winner. Take it away.

I react really badly to pain and as long as my pain is managed, I have no problem with procedures. But this requires some frontloading with IV meds and the ability to give more if necessary. My dentist can’t do any anesthesia but local in her office. I called oral surgeons who extracted my teeth before I was diagnosed. They wouldn’t work on me in the office because I’m a high anesthesia risk. (Which, in fairness, I am.)

So I visited the oral surgery office at the Brigham which inexplicably does not do IV sedation unless you are in an OR, and everyone agrees I need twilight sedation so that means I need an OR. First available is in late April. I called all the people and did all the things. Unless I end up in the hospital as a result of this tooth, they can’t move it up. I’m trying to come up with a workable solution, which I expect will be something like temporary filling to get me to the April date. Just ridiculously irritating.

I expect things like having pieces of my GI tract removed or devices implanted in my body to be complicated. It is the complexity of things that should be easy that is difficult. It should not be this hard to get a simple extraction.

I have been having this issue with my vision recently where later in the day, my vision feels darker, but when I turn on more lights, it hurts my eyes. I made an appointment to see an eye doctor at the same practice as my PCP. This guy took one look at me and my port and said I needed to see a specialist to have my eyes dilated because he wasn’t comfortable dilating them. I have my eyes dilated every two years. It’s never a problem. So I had to make another appointment for next month and now wait for that. Stupid.

I am fortunate that I am not particularly sensitive to chemicals, especially given my line of work. But I am very sensitive to certain cleaners. I’m so sensitive to some that everyone who works with me knows about it. I’m so sensitive that when I started telling this story at work today, I said, “You know how I react to bleach?” and my coworkers nodded knowingly, “Yes.”

Anyway, I came home on Tuesday and opened the door to my hallway and in thirty seconds was on my hands and knees on the floor, coughing and spitting out mucous. My landlord had cleaned the hallway with something that triggered a reaction. My respiratory tract was on fire and producing mucous like some gross sci-fi monster and this nasty wet cough and a headache that felt like it was trying to scalp me and I have lived here for three years are you fucking kidding me right now?

My dog got very upset and ran around the apartment barking authoritatively at lights while I lay on the floor coughing and feeling sorry for myself. It took two days to get rid of the smell using an aggressive amount of door opening, haphazardly arranged fans and kitty litter that my dog is scared of.

Some readers sent me messages to make sure I was okay since I just dipped out with no explanation. I’m right here, at Degranulation Station.

*makes choo-choo train noise*

Master Index

Hello, intrepid readers –

At long last, there is finally an index of the posts that categorizes them by type.  You can find this index at the top of the page under “Master Index”.

In the next few days, the Master Index menu will be broken up into smaller menus.  For right now, they are separated by headings.

Please also remember that MastAttack has a search feature, at the upper right hand corner. You can also click on post tags on the right side to see posts tagged with those subjects.

Happy hunting!

Lisa

Achilles

When Achilles was an infant, his mother was told that he would die young.  She carried him to the River Styx, the dark water that separated Earth from the Underworld, and dipped him in its waters to make him impervious to harm.  Achilles grew up without fear of injury until a poison arrow landed in his heel, where his mother had held onto him many years before.  He died and became a warning – there is always a weakness, no matter how strong something seems.

I have an Achilles’ heel, and it is airports.

Since July 2014, I have travelled by plane to the following places: Seattle, Colorado, Orlando, Los Angeles, Hong Kong, Beijing, and Colorado again.  I talked to lots of people who are more intrepid travelers than I am and got their advice.  I talked to my doctors.  I got all the paperwork and all the notes. I organized everything and made sure I had enough meds, port supplies, ostomy supplies and safe foods in case we got diverted or delayed or cancelled.   I called the airline the day after booking tickets several weeks before travel.  They were always very courteous and attentive and assured me I would not have any trouble.

The problem happens at the airport.  Specifically, it happens at the check-in counter.  I always ask for a wheelchair to meet me at the counter because while I am certainly much more stable than I was a year ago, standing up, especially in one place, pulling heavy things, is not my strong suit.  So I get to the counter and identify myself and ask for the wheelchair.  Then, while we are waiting for the wheelchair to come, it happens.

They tell me I can’t bring on my two luggage containers of medical supplies and insist that they will make me gate check one, and also that my bag holding my infusion pump and medication WHICH IS ON AND ATTACHED TO MY BODY counts as my personal item and has to be stowed overhead.  So I can only take half of my medical supplies and the bag with a line pumping medication to my body has to go in an overhead bin that will close on the line.  And so it begins.

The last eight flights I have taken were with Popular American Airline That I’m Sure You Can Guess.  I like Popular American Airline for a few reasons: their seats are bigger, they understand that I have a legitimate need to have more space (to juggle IV meds), they eventually agree that it is impossible for me to stow my pump because it is attached to my body, and they have movies and Wifi.  I pay more to travel with Popular American Airline because once I am on the plane, I generally don’t have huge problems.  I expect to get questions, I expect for people to not know things, that’s fine.  But once we have a brief exchange, they agree that what I was told by their disability services people is accurate and I have a pleasant flight.

That is not the case with the people at the check-in counter.

I have been told many tales by the people at the check-in counter: that I cannot bring all of my necessary medical supplies onboard (which is not true); that I can only bring one medium sized piece of luggage with supplies; that I have to bring multiple small pieces of luggage with supplies; that I can bring one small piece of luggage and then the rest have to be in “compressible” bags; that I can bring one small piece of luggage and it has to meet the weight limit; that I can bring one small piece of luggage and it doesn’t have to meet the weight limit; and so on.  So I never really know what I’m going to get, and calling ahead of time never helps.  I get a different answer depending on who is behind the counter.  They eventually call a supervisor, and then the supervisor tells me whatever they happen to think, which is also inconsistent.  It’s always a nightmare, and for the last several flights, I have literally started crying within fifteen minutes of being at the airport.

No amount of preparation or education helps.  Popular American Airline will not give me a letter explaining what I can bring that I can show at the counter.  They cannot “keep notes about me” so that they have a copy of my fit to fly letter on file.  They will not put in writing that I can use the pump.  Best of all, everytime this happens, they send me an email that says that they are sorry that I did not have a good experience but that they “respectfully deny” that they violated any regulations.  I don’t call them everytime this happens because I know they don’t care.  They just automatically send me an email that is basically an enormous fuck you.

What I find really funny about this situation is that sometimes, the people at the check-in counter will tell me that the reason I can’t talk those supplies with me is because TSA won’t let me.  TSA is much maligned and I have to tell you that I have not had a bad experience with TSA since I started travelling again in July 2014.  They know what PICC lines, ostomies and ports are. They are courteous and efficient. I plan to get patted down and have my bags opened and my things and my person swabbed for explosives because these people are trying to make sure no one blows up airplanes and I am carrying large amounts of liquids, glass vials, syringes, needles, adhesives, medication bottles, an endless amount of pills, a clicking infusion pump, packets of cromolyn and a partridge in a pear tree (sung).  They are always very careful to be sure they don’t contaminate any of my line supplies or medications.  TSA is not the problem here.

So I get all excited to go on these trips and see people and do things and I premedicate and call and call and jump through all the hoops and then I get to the airport and within minutes, I am so frustrated that I am crying.  And then that’s it, I’m the girl who cries at the airport and you can never un-be that girl.  And it has gotten so bad that it makes me not want to travel.

In my heart, I have always been a traveler.  I have always wanted to get on airplanes and go places and see new things, even mundane things, even by myself.  Before I got sick, I would board planes with my iPod or Discman (I know, I’m dating myself here) and a small journal to write in.  I would write and listen to music while looking out the window.  I didn’t just like being in different places.  I actually loved the change of the environment, the little lights below at night, the reddening of the sky as the plane chased daylight.  I was a good traveler.

Being at the airport now is a reminder that my experience in the before matters very little.  It doesn’t matter that I used to be a good traveler, because now I’m just a crying woman who needs a wheelchair and wants to bring too much luggage onboard.  I have had some incredible, life changing victories in the last two years, but it has been hard won.  It takes such a toll on me, both physically and emotionally.

Last week, I went to visit one of my best friends in Colorado (hi, Priscilla!!!!).  I stayed for four days, which is pretty short for me, but I couldn’t take more time away from work right now.  We stayed over in Denver, hung out at her place in Summit County, went to Garden of the Gods and drove back to her place through mountain backroads.  I have been to Colorado ten times in the last nine years, and that drive home was the most stunningly beautiful landscape I have ever seen.  Purple mountains, blue skies, unblemished snow fields, no clouds.  So beautiful it feels like I am different for having seen it.

The day I flew home was one of the longest days of my adult life.  They right away started with you can’t take all this stuff on the plane, then there was a mechanical issue with the plane after we had boarded and we all had to get off and then they cancelled the flight.  One of the gate agents really put her ass into making sure I could get home that day and I got a seat on a direct flight with another airline that night.  By the time I got home, I was really in bad shape.  I literally couldn’t stand for more than a minute or so at a time.  Bad.

I want to be a traveler again like I used to be and my Achilles’ heel is airports and I’m so fucking sick of this shit.

 

The Sex Series – Part Five: Seminal allergy, post-orgasmic illness syndrome and burning semen syndrome

Allergy to semen has only been well documented and studied in cisgender (non-transgender) women. Some papers go so far as to state that this problem is exclusive to (cisgender) women.  Despite this, there is evidence that (cisgender) males can have allergy to semen, including their own.  Furthermore, semen allergy is not restricted to vaginal intercourse and can be seen in anal and oral sex, as well as local reactions when semen contacts skin outside of the vaginal area.

Semen contains a number of inflammatory molecules, including TGFb1, MCP-1, IL-13 and IL-17.  MCP-1 has a well described role in mast cell activation in which it draws mast cells toward an inflammatory site and directly induces histamine release.  The physical effects of orgasm use opioids made in the body.  Some patients experience a days-long reaction to orgasm.

Termed “postorgasmic illness syndrome”, allergic symptoms affecting the genitals and general flu-like symptoms present 2-8 hours after ejaculation. These symptoms can persist for up to a week, with the day after ejaculation often being the worst.  Postorgasmic illness syndrome causes excessive sweating, rhinitis, anxiety, depression and difficulty concentrating.  This condition is recognized as a rare disorder by the NIH.  It has been hypothesized that these patients are in fact suffering from opioid withdrawal caused by the rapid depletion of opioids by orgasm.

Semen allergy has been associated with serum IgE to prostate-specific antigen (PSA), a molecule involved in the kallikrein-kinin system.  Autologous semen allergy, or allergy to one’s own semen, can be confirmed by reaction to semen in skin prick allergy testing or by specific IgE in the blood. One study found that 88% of patients who experienced burning and pain after ejaculation were positive for allergy to their own semen.

The phenomenon of burning after ejaculation is called “Burning semen syndrome”. In these patients, burning, pain and swelling of the UG tract occurs following ejaculation.  This study also evaluated partners of these patients receiving vaginal sex.  In many instances, both members of the couples evaluated were positive for allergy to semen. 89% of these couples had at least one member who exhibited allergic reaction to semen.

 

References:

Van Dijk F, et al. Non-oncological and non-infectious diseases of the penis (penile lesions). EAU-EBU Update series 4 2006; 13-19.

Ghosh D, Bernstein J. Systemic and localized seminal plasma hypersensitivity patients exhibit divergent immunologic characteristics. J Allergy Clin Immunol 2014: 134 (4): 969-972.

Jiang N, et al. Postorgasmic illness syndrome (POIS) in a Chinese man: No proof for IgE-mediated allergy to semen. J Sex Med 2015; 12: 840-845.

Bernstein JA, et al. Is burning semen syndrome a variant form of seminal plasma hypersensitivity? Obstetrics & Gynecology 2003; 101 (1): 93-102.

Chen WW, Baskin M. A 33-year-old woman with burning and blistering of perivaginal tissue following sexual intercourse. Annals of Allergy, Asthma & Immunology 2004; 93: 126-130.

The Sex Series – Part Four: Seminal allergy

Author’s note: This series is long and covers a number of topics other than vaginally penetrating sex, including male and female orgasms, reactions of the penis, testicles and prostate, anal sex, and pelvic floor dysfunction and pelvic pain.  The first several posts are about vaginally penetrating sex because this is what I get asked the most questions about.  It is not meant to be exclusive to anyone on the basis of gender or sexual orientation.

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It is possible to be truly allergic to semen, although this is rare.  One of the hallmarks of this condition is that it is completely preventable with condom use.

Most patients react during or after their first experience with vaginal penetration by a penis resulting in ejaculation.  Each subsequent exposure generally causes a worsening reaction. However, it is possible to develop an allergy after a number of intercourse encounters. In studies, patients with seminal allergy are allergic to semen from multiple partners, although there are anecdotes about patients reacting to semen from a single partner and not only.

This type of allergy has been linked to IgE.  The testing for this sensitivity involves skin prick tests with seminal protein that produce wheal and flare response.  Semen specific IgE is often appreciable in the blood following exposure.  Some patients have type III and type IV hypersensitivity reactions to semen and symptoms can occur days after the exposure.

Like all other forms of allergy, the range of reactions is massive.  It can range from a low level itching to anaphylaxis requiring epinephrine.  Itching, burning, redness, swelling, pain, and blistering in the vagina have all been reported. Trouble breathing, cough, wheezing, GI symptoms, generalized hives, disseminated angioedema and full anaphylaxis can occur.  Anaphylaxis has been reported in 16 cases, with one case causing loss of consciousness.

Across studies, most patients have either a personal or family history of allergic conditions.  80% of patients in one study had a family history of atopic disease.  One study found that the onset of seminal allergy often coincides with genital system conditions or procedures like hysterectomy, IUD placement or removal, pregnancy and tubal ligation.  It is hypothesized that the disruption of the normal state of immune activity in the vagina by these activities can trigger seminal allergy, but this has not been proven.

References:

Schlosser BJ. Contact dermatitis of the vulva. Dermatol Clin 2010: 28; 697-706.

Moraes PSA, Taketomi EA. Allergic vulvovaginitis. Ann Allergy Asthma Immunol 2000; 85: 253-267.

Chen WW, Baskin M. A 33-year-old woman with burning and blistering of perivaginal tissue following sexual intercourse. Annals of Allergy, Asthma & Immunology 2004; 93: 126-130.

Harlow BL, He W, Nguyen RHN. Allergic reactions and risk of vulvodynia. Ann Epidemiol 2009; 19: 771-777.

Liccardi G, et al. Intimate behavior and allergy: a narrative review. Annals of Allergy, Asthma & Immunology 2007; 99: 394-400.

Sonnex C. Genital allergy. Sex Transm Infect 2004; 80: 4-7.