FAQ : living with constant pain in a certain part of your body

Here’s the thing – I have a condition that I seldom talk about. I don’t complain about it most of the time, not even to my self, not at home, and then at most to Niklas. I maybe cry about it once a year or every two years or so on a bad day, but other than that, I try not to think about it.

It is debilitating, and it is the reason why I could never have a proper 9-5 job, but getting disability status would mean first going through years of not having treatment (which in this case means Niklas massaging me every day and me taking muscle relaxants plus sometimes pain medication) to show the doctors in how much pain I would be without it. I am simply not willing to do that, especially since I can function almost normally as it is now.

The fact is however, that I am in constant pain, not as much as I used to, but it is always there in the background. I tend to ignore bodily aches and pains (benefits and drawbacks of being an ENTJ), and I always try to look positively on things. Things could be so much worse. I am privileged. I have a husband, and a home and a possibility to at least write for a living some day, so I am not in such a bad state as for example many young women and girls in parts of Africa who have much worse injuries than I do, and still have to work and take care of families sometimes even without the help of pain medication.

So what are you rambling about? Why won’t you just come out and say what it is that ails you?

Because the part of my body that is damaged is the one part of the female anatomy that it’s not proper to talk about. My vagina. I have scarring on the side of my vagina and it won’t ever go away.

Are you sure? Have you done everything you can to look into it?

If by everything you mean consult with Denmark’s leading surgeon on the area, Denmark’s leading physical therapist on the area, one of Finland’s best gynecologists, then yes – I have consulted with them and plus other people. I have been through three surgeries, and consensus is that there is no point in further surgery, because my body would just create new scarring in the new cut.

There is a slight possibility that a specialized surgeon in the US could do something about it, but that would be extremely expensive and require resources that we simply don’t have.

How can one little scar affect so much that you say you are almost debilitated?

That one little scar is located in a place that is rich in nerve endings and seems to affect the muscles of the area, and when they get tense, all the rest of the muscles get tense, which builds up. After giving birth, before we knew what was wrong with me, I was in constant pain from my feet to my upper back, until my muscles were in such a bad state that I could not walk without some form of support. I was on constant pain medication, and always waiting for the four hours to go by so I could get my next pill.

Since visiting Birthe Bonde, an amazing physical therapist in Copenhagen, I got some massage help and she showed Niklas how to massage me to give my muscles relief. Since then it has been much better, which is why I don’t talk about it most of the time. I can live with this. Many people have it much worse.

Can’t you just tell people?

Yes, of course I can. These are my options, for example at a party:

I have aches, and don’t want to get up to fetch something, so I for example ask Niklas to fetch it for me.

  1. I say nothing, and people assume I am lazy or that Niklas is hen-pecked and they think (and sometimes say) ”Poor Niklas”
  2. I claim to have something else that ails me, like backache or something, which is sometimes also the truth, because the pains are spreading through my body. This is the most socially acceptable alternative, but sometimes people then look at me strangely when they see me do motions that they did not think I could do, because my explanation was a bit faulty. I.e. I come out sounding like a liar or a hypochondriac
  3. To say my vagina hurts. And, if people didn’t like me already – this is one sure to make them dislike me, and mean not getting invited to any more parties (not that we get that many invites as it is! Most women don’t really like me – statistically most women are ESFJ or ISFJ, which I personally don’t have any problem with seeing as I was raised by a bunch of them, but they already see from my appearance that I’m not conforming to social norms and that raises red flags to them even before I’ve opened my mouth).

No matter what I tell, it is something that either feels like a lie to me, or that is uncomfortable to people or both.

Most of the time I say nothing and let people think what they will. If they are so shallow that they judge me because Niklas fetches me things, then they’re not people I want to be around anyway.

Have you tried yoga or meditation?

Yes, thank you, it’s been 15 years now since this whole thing started – by now I’ve tried almost everything there is, but if you have an idea that doesn’t involve medication/massage/exercise/yoga – I’m all for it. Otherwise – just presume I’ve tried everything there is, except for really obscure things, so if you sit on an obscure treatment for scarring on the inside of the body, I’m happy to hear about it, but no homeopathy or new age-stuff, thank you. I prefer researched methods that work.

Oh, poor Niklas who has to cater to you all the time AND massage you, and then you write about this embarrassing thing on your blog!

As I recall, it takes both a sperm and an egg cell to produce a child and since he volunteered to mix his DNA with mine, we think of this as something we are both in together. Why should I feel bad that he massages me every night and has to fetch things for me? If it was the other way around, I would be the one doing the catering, and nobody would raise an eyebrow.

He usually reads my blog posts before I publish them, and he has approved this message.

In addition, there are plenty of more embarrassing things that people don’t talk about.

But why even say anything about it? This is such an uncomfortable subject?

Because I am certain I am not the only one who has these kinds of problems. Billions of women go through childbirth. It is most certain that some experience similar things that I did, that they get scarring, that they remain with pain.

I have no idea if I know some of them. I haven’t spoken about it. It is taboo – and all things taboo remain unspoken of, until someone breaks that taboo.

People/women don’t talk (or didn’t used to talk) openly about their periods, and about having pain.

People don’t talk about problems with their rectum (even though that can be really debilitating when you’re out and about).

People/women don’t talk about when their vagina hurts from all kinds of reasons.

Certain parts of the anatomy are taboo to talk about. It is perfectly fine at a party to say you have a headache, but it’s not fine to say you have menstrual cramps. It is perfectly fine to say you go to physical therapy because of hurting your knee, but it’s not fine to say you do it because you got an injury in a certain female part while giving birth.

Or you can just talk openly about it and watch people get uncomfortable and not get invited to any more gatherings.  I guess I’m the latter category now, because by now, I’m just so sick and tired about having to come up with excuses all the time for something that will never ever go away. That will be with me for the rest of my life.

…but then again, I’m ENTJ, so the probability of me discussing anything that bothers me physically and that I need help with is closer to zero! 99% of the time, I pretend everything is fine. Today just happens to be an anomaly, a day when I was just so fed up with explaining things that I needed to get it out of my system.

 

 

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