Autoimmune Disorders and PTSD

So this thing that makes my vulva and vagina feel like it has a bad sunburn (sometimes a healing itchy one, sometimes a fresh hot painful one) is an autoimmune disorder, so I’m looking into autoimmune disorders to see what I can do to self-manage and care for my body.

I don’t like the idea that my body has decided to attack my vulva. She’s been through enough, so I’m hoping to turn that around.

What I’ve found is an epidemiological study looking at folks with PTSD and autoimmune disorders in soldiers with PTSD. [An aside: Soldiers are so much safer for people to wrap their heads around studying, aren’t they? They’re clearly not crazy, like those women who said they were raped in childhood… Thank Goddess we have them to provide a parallel example to validate with, but really…] No big surprise – folks with PTSD have more of them. Here’s the specifics: Continue reading Autoimmune Disorders and PTSD

What not to say to survivors of childhood sexual assault…

Do you have a friend, relative or lover who survived childhood sexual assault? Here’s 6 of the top 10 things not to say or do.

1) Breaking the kvetching order  – Don’t expect the survivor to provide emotional support to you about your feelings about their trauma. Go to other people with that.  Support her or him, but refrain from offering advice or judgement.

2) Giving advice. If you haven’t survived childhood sexual abuse, really you’ve got nothing useful about this. I’m sorry, but it’s true. Keep your advice, particularly about forgiveness, moving on, or dealing with abusive or complicit relatives and parents to yourself. For more information on why this is so, please read this post on what it’s like to have PTSD and complex PTSD.

A related issue is platitudes. Phrases like “Parents do the best they can with what they know at the time.” “Mothers/fathers always put their children first.” “Family comes first.” for example, are often completely false in families containing abusers and can make your loved one feel like they are an alien from another planet.

The closest experience a non-survivor can get to what a survivor is going through are experiences of deep loss and grief. Think about how you felt when someone close to you died, or the biggest tragedy you have experienced or could imagine experiencing. That’s probably closest to the experience your loved one is having. If you’ve had one or more experiences of trauma  then you might also be able to relate. By trauma, I don’t mean just stressful events. Here’s what I mean by trauma:

direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity; or witnessing anevent that involves death, injury, or a threat to the physical integrity of another person; or learning about unexpected or violent death, serious harm, or threatof death or injury experienced by a family member or other close associate(Criterion A1). The person’s response to the event must involve intense fear,helplessness, or horror (or in children, the response must involve disorganized or agitated behavior) (Criterion A2). (p. 463 The Diagnostic and Statistical Manual of Mental Disorders, 4th edition, Text Revision (DSM-IV-TR; American PsychiatricAssociation [APA], 2000))

3) Investigating – It’s not your job to determine if your loved one is telling the truth about what happened to her or him. She or he is probably doing a good job doubting his/her own reality right now. Just stay out of grilling her him for details and trying to make sense of it. She/he will sort most of it out eventually, but based on how the memory works in cases of trauma, it’s not as straightforward a process as you might expect.

4) Not wanting to talk about it – Yes, child sexual assault is disturbing, but it’s a fact of your loved one’s reality, and part of her daily existence. She/he should be able to refer to it in conversation without a big ‘disturbance in the force’ or you changing the topic. It’s a big deal, but don’t make a big deal of it either.

5) Trying to fix it. – You can’t. The best you can do is to walk beside your loved one, to listen and to care.

6) Expecting it to be over quickly – grieving childhood sexual assault, particularly recurring assault, takes about 10 years from the time the person is actively healing. Think about people who have tragically lost one of their children to accident, illness or murder. Do you expect them to ever stop grieving? Yes, it may die down, but there will always be times when grief is active.

I am sure there are more of these – anyone got any others to add?

Awesome Sexuality after surviving the worst

This is obviously not me, but is a wedding picture of a poly triad, and expresses so beautifully that feeling of being happy that your love is happy with someone, which we call compersion.  Photocredit: Waffletaxi
This is obviously not me, but is a wedding picture of a poly triad, and expresses so beautifully that feeling of being happy that your love is happy with someone, which we call compersion. Photocredit: Waffletaxi

I remember despairing of ever having a decent sex life, of ever actually wanting sex, of finding people who wanted me and would be good to me, with whom I could navigate the minefield that is survivor sex, so I thought I’d brag about how awesome things are so if that’s where you are right now, you’ll know it can get a lot better.

I spent the weekend with my girlfriend. Okay, we’re not officially calling one another that, at least not in front of one another, but the writing is on the wall. Keep in mind, I also have a wife, who is consenting to me having a girlfriend, and both women are fully informed and consulted with about how everything goes down.  I like how Jada Pinkett-Smith refers to her own marriage: “Will and I BOTH can do WHATEVER we want, because we TRUST each other to do so. This does NOT mean we have an open relationship … this means we have a GROWN one.” We’re planning for the three of us to meet and for the two of them to be introduced in the next little while. Wow. This still fills me with gratitude.

My gf is lesbian, which is kind of a relief. Lesbian culture is different from bisexual/pansexual culture, and being with someone with your own terms of reference and community culture makes things a lot easier.

She is also a member of a different queer subculture than I am although I do have friends who are part of that community. I am finding that this isn’t really as big a clash as I’d feared it would be, or maybe it’s just the hormones talking.  Getting to know people as they really are sure breaks down stereotypes. I will probably write at some point about how some of how we are together interacts with my abuse triggers, because it does. I have a firm policy for myself of doing nothing sexually to reinforce the negative neural pathways and associations created by the abuse, including fantasy, but I’m actually pretty adventurous other than that. I am really happy about how much I trust myself to make good choices about what I do and do not do with my body. If this doesn’t work out, that’s fine. I will have no regrets. Self-trust and self-love are the most powerful resources I know. This is another healed thing. Self-trust, and making good choices.

Okay, the first awesome sexual thing is the above. I had an invasive, painful, emotionally difficult procedure done on my vagina on Friday, followed by freaking Mother’s Day weekend, and what am I talking about on Monday?  My awesome love life after spending a cuddly weekend with my new love. Did I tell her about the procedure? Did I have a cry about it? Did the physical limitations get in the way? Yup. We just acknowledged and worked around it, feeling closer with one another and had lots of pleasure and intimacy.  It’s awesome being a grown up.

Oh that’s another word we’re not using with one another, or at least I’m not. I’m pretty judicious about the ‘L’ word. I want to use important words like that honestly. Don’t get me wrong, I’m falling for this woman, let’s call her ‘Kitten’ (she’d find that funny) pretty hard, but I’m not ready to use the L word. I love my wife (let’s call her ‘Root’), and that took years to develop and mature. It seems weird to use the same word for all different kinds of affectionate feeling, but maybe that’s good too. I love my friends and some of my family, and those kinds of love are different in colour and shape from one another. I wonder what the common thread is that makes it love? Loyalty, affection, commitment, making family of someone perhaps.

Speaking of which, I was checking in with my wife last night, as we crawled into bed with one another after spending the weekend apart. I asked if she felt I was still keeping up my end of the marriage, doing all my ‘wifely duties’. She asked what I thought those were and I rattled off a long list of things, from caring about and for her family to helping her with her computer. She seemed impressed with the long list of things I consider part of my ‘job’ as her wife. She shared that she was trying to be good with the poly, because she knows that having a sexual life is important for me and supports that but that if she had a sex drive of her own she wouldn’t be. I asked if she got everything from me that she had always gotten, and she said she got much more now. I forget how she put it but that basically the quality of our intimacy, and connection and relationship was just better. I told her that I am happy, that her and Kitten both make me happy, and that we don’t have to do things any way other than what works for us.  I’m also noticing that with the romance of my new relationship, I’m reminded of the romantic touches that come so easily when romance is in the air,  that I can do for my wife as well.

In short, life is awesome and full of love. “Take that!” I say to the abuse triggers and assorted childhood crap. The best revenge is indeed living well.

Better, stronger, faster than before.

First off, the specialist did not help me assess the damage from the assault. I was disappointed. However, she did have a very credible theory for what could be causing my pain and took a biopsy to confirm. The biopsy was freaking painful and caused a lot of bleeding (they cut off a small piece of flesh to look at under the microscope) but can be used to confirm the diagnosis.

The diagnosis she’s testing with the biopsy is vulvar lichen planus. It’s an inflammatory condition of the skin, that women sometimes get on the vulva. I have most of the symptoms and the doctor thought there was a good chance that’s what it is. Basically it makes your vulva and vagina look and feel like you’ve had a bad sunburn. I looked up some pictures to add to this post, but I don’t want to inflict them on you. They’re not pretty.

If so, it’s only indirectly caused by the assaults. According to the American Skin Association “Sometimes this disease affects the areas of skin where you had a trauma, such as a superficial scratch, cut, or burn.” So the reason I have it on my vulva is likely to be because my vulva was injured.

It is not caused by an infection, aging or menopause, diet, hygiene practices or sexual activity.” and it is not sexually transmitted.

The gyne wasn’t keen to remove the flesh tag from my vagina, she thought it might cause more scarring. I’m willing to wait to assess that till the lichen planus (if that’s what it is) gets under control. If there are any other women out there who have kept or removed flesh tags from the vaginal opening and want to weigh in on whether it was a good thing, I’d love to hear your comments.

Lichen planus is thought to be an autoimmune disease, but they’re not positive about that. It does run in families a bit too.

One source said that because it’s autoimmune, avoiding allergy triggers or taking antihistamines could help. However, primarily it’s treated with steroid creams, or if that doesn’t work, oral steroids.

She couldn’t prescribe the cream now, because the hole from the biopsy has to heal first, which will take about a week. I can’t get another appointment to see her for a month, so that’s how long it will take.

In the meanwhile I’m going to (sigh!) try and eliminate dairy and gluten, both of whom I have mild allergic responses to, in the hopes that will help calm my immune system down. There are lots of things that are helpful for calming down autoimmune issues too, so I’ll look into those and try them out.

All in all, it’s hopeful. I may be able to have sex without pain and itching afterward. That’d be pretty awesome.

Here’s a video a woman made with art and commentary about a similar condition, called Lichen Schlerosis. The art and sentiments are pretty much the same though. Her drawing of a sore vulva inside an eye is the featured image for this post.

Courage, Perseverence, Gratitude

Here’s an excerpt from the typed page I’m giving to the Ob/Gyn specialist later this morning:

“What I am here for:

1)      My goal is to improve my ability to mitigate the impact of my injuries on my sex life and daily level of pain and discomfort. I’d like help to figure out how not to have any pain at all on a daily basis. I also would like to have a clear understanding of the damage (tearing, vascular, nerve?)  so that I can modify sexual activities to have pleasure and avoid pain, and to comfortably and pleasurably have sex more frequently.

2)      Is there anything about my physiology following the injuries that makes it more likely for me to experience vaginal infections or pain around my urethra. If so, what can I do as self care to compensate for this? (I already do all the usual things – cotton panties, no douching, no scented products)

3)      I would like a very thorough assessment of what damage was done by the assaults. Where any tearing might have happened. My research indicates that vaginal injuries in childhood tend to heal without scarring, and the fact that I have scars suggests either repeated or deeper damage, so it’s possible there were other injuries that are not as apparent. Children who are raped apparently typically tear toward the anus, and my scars are in the other direction. I’d like to know specifically where any tears are, were or may have been, where any scarring, nerve damage or vascular damage is and where any flesh tags are. I think this information will help me work around them and  mitigate them

4)      I would like to discuss the possibility of removing any flesh tags that are getting rubbed during penetrative sex and what the impact of that might be.”

I feel really calm, centered. I had a little cry in the shower this morning, but it was full of gratitude for the support and for the women and men who are walking beside me in this. I know that the Goddess has my back. I am meeting more and more survivors who have experienced vaginal damage. Women, I am doing this for me, but I am doing it for you too.  Thank you for walking beside me in this. May we all be blessed. May we all outlive our abusers and dance on their graves.

Sophie Scholl - holocaust resister - "Somebody, after all, had to make a start. What we wrote and said is also believed by many others. They just don't dare express themselves as we did."
Sophie Scholl – holocaust resister- “Somebody, after all, had to make a start. What we wrote and said is also believed by many others. They just don’t dare express themselves as we did.”