Don’t Ask, Don’t Tell

No, this entry is not about gay rights.  It’s about another taboo part of daily life–female sexuality.  In particular, it’s about my personal sex life.  If you’re related to me, or easily offended, you may not want to read this one.  It’s gonna make you uncomfortable, at the least, but if you can get through it, you will have a profound understanding of endometriosis that most women would never dream of telling you.

I started having sex at 17.  I always loved it, and when I met Sam, I loved it even more.  He was amazing–he made me orgasm almost every single time.  Then when I was 23, it started to hurt.  I ignored it for a while (a year and a half), hoping it would go away.  When I finally went to the doctor, I found out it was endometriosis.  Little did I know just how much that would impact my life.

At first, the pain wasn’t overbearing.  I could ignore it for the most part.  It did seem to get worse if I got close to orgasm, but I could handle it.  Over time, the pain became so bad that certain positions became impossible.  Anything from behind is just not happening, probably for the rest of my life.  Most days, it’s all I can do to handle missionary.  And that’s after doping myself up with Celebrex.

We can’t have sex more than once every 2-3 days, because I hurt afterwards.  And it’s not that good hurt like when I was younger.  It’s a “something is wrong with my body” hurt.  Sometimes I hurt so much right afterwards that I can’t get off the bed until I force my muscles to relax.

Starting about 3 months ago, it hurt so much when I orgasmed that I was afraid to even try.  Made for a lot of quickies, and a lot of frustration.  Sam is a giver, so he doesn’t like seeing me in pain or unable to enjoy myself.  I took some herbal stuff from my naturopath, and that has helped the orgasm pain.  I am still afraid to let myself go completely.

O, and about orgasm–I cannot do it from internal stimulation anymore.  It’s gotta be clitoral stimulation or nothing.  How’s that for aggravating?

The other night, we had “normal” sex for the first time in months.  It didn’t hurt at all.  I had a slight heavy feeling afterwards, but no pain.  I cried, I was so happy.

Despite all this, I’m one of the lucky ones.  I’ve heard of women who cannot have sex at all–can’t even have a pelvic exam–without excruciating pain.  I’m trying everything to make sure I don’t get to that point, but Sam tells me he’ll still be with me if we can’t ever have sex again.  And I believe him.

Timeline of My Battle

For as long as I have had a period, it has not been normal.  I had cramps so bad with the first one that I threw up.  After that, I had no cramps for years, but always very irregular bleeding.  Once I bled for 5 weeks.  I also skipped months pretty frequently.  I went on Loestrin (birth control pills) to regulate my cycles, and when I came off of them, I started having horrible cramps again.

These cramps were not as bad as the first one, but I still needed post-surgical pain meds to combat them.  Even those barely took the edge off.  Most of the time, I had to lay in bed, on my stomach, with one knee up to my chest and the opposite hand pressed against my lower abdomen.  I think the combination of the heat and pressure helped.  I remember having to come home early one day in high school because I was bleeding so much that I was dizzy, and had awful pain.

I went back on BC, and these helped, but I still had to take heavy drugs for cramps.  When I was 17, I started getting IBS symptoms.  I was too embarrassed to say anything about them for years, so I didn’t actually see a GI doctor until I was 25.  He was pretty useless, and rude… the only thing he could tell me was that it wasn’t serious, because if it was, I wouldn’t have made it 8 years.

When I was 23 I started having dyspareunia–pain with sex.  Talk about a relationship killer.  I have the most wonderful husband in the world though, as he still married me and still tries every day to make me comfortable and happy.

At 25, after having dyspareunia for a year and a half, I decided to see a doctor about it.  My GP referred me to a gyno.  My gyno tried a few things–first she said to take 800 mg Advil an hour or two before sex.  That didn’t really work.  Then she put me on Lexapro 10 mg once a day.  I was really wary of this, as I had already been on Lexapro for depression and really didn’t want to go back on it, but I didn’t know what my options were.  This didn’t help either.  She suggested physical therapy, but I never went as I didn’t think whatever I had was really that serious.

February 7, 2008 is when I had my laparoscopy.  It started out being diagnostic and ended up trying to remove as much of the endo as possible.  We got to the surgery center at 8:30 and were back home by 12:30.  My surgery only lasted an hour, and I had to eat four crackers before I could leave–which took another hour.  My doctor told Sam that I had endometriosis, but that’s all I would really learn until my followup 3 weeks later.  I went home and slept.

The first day, I was so tired that I didn’t even care enough to take off my hospital bracelet until the 5th time I woke up.  I remember sitting on the toilet and pounding the wall so Sam would bring me scissors.  Things like that normally bother me a lot, and I have to get rid of them immediately.  I think the first day I was awake for a few hours at most.

The second day I still slept a lot, but I managed to stay awake for five hours.  I pretty much ate, played on the computer a little and went back to bed.  Sam was a wonderful nursemaid the whole time.  I kept the phone by my bed so that I could call him whenever I needed anything.  Being intubated makes it very hard to talk.

After the second day, my schedule started getting back to normal.  I tried to go back to work after about a week and a half, but ended up having to get Sam to take me home.  I had to stumble through a pharmacy after about a week for more pain meds–I didn’t think to ask what over the counter medicine I could take until I needed more.  The 100 ft. walk from the front door to the pharmacy counter at a Rite Aid seems like nothing, until every step makes you feel ill.

I became increasingly dizzy after the surgery, and no one could tell me why for a long time.  I think I went back to work full time after 3 weeks, but I still would get horribly light headed.  I would be sitting in my chair not moving, yet my head would be swimming uncontrollably.  Or I would walk around Target and get disoriented, not even remembering what I went there to get, and ultimately leave empty handed.

At my 3 week followup, my doctor explained a little more about the disease to me.  She said that birth control pills are thought to slow the growth of any endometrial implants, so I went on Lybrel.  I have no idea if it has worked, but I’m still on it.  I’m almost afraid to know how bad my endo is now, and the only way to find out is to have another surgery (which I can’t afford).

January 31, 2009 we moved to Vermont.  I started seeing new doctors, and my new gyno wanted to try Lupron.  All I had read about Lupron is that it is the only drug engineered specifically to treat endo.  It worked for about two weeks, then the pain returned.  Lucky for me, I had taken a 3 month shot, so I got to deal with hot flashes for another 10 weeks.

Gradually, I started having pain sporadically where my ovaries are, and not just during sex.  It didn’t happen every day at first.  When I decided to see a naturopath, it had gotten to every day, and some days all day.  Most days it would come and go, and it was never severe pain, but pain that lasts that long is still obnoxious and frustrating.

After the Lupron stopped working, my gyno referred me to a pain management specialist.  I call her my pain doctor.  First she tried Celebrex, then Topamax, then Neurontin.  They all did the same thing as Lupron.  After the Neurontin stopped working, she suggested Celebrex again, but taking two pills a couple hours before sex instead of daily.  As much as I hate doing this, it has worked so far.

About the time I started Topamax (December 2009), I also started the special diet.  Topamax is supposed to make you lose weight, and I have shed 46 lbs. since starting the diet.  I personally think it is more because of the diet than the drug.

A month ago I started going to a naturopath, and he has helped me more than anyone else.  I am now on 4 Ease Pearls in the morning plus 1 alpha lipoic acid/acetyl l-carnitine gel cap, and a tablespoon of calcium-magnesium-zinc-phosphorus-vitamin D3 powder mixed in water.  At night I take 4 Moon Pearls, 2 cod liver oil/butter oil caps, 1 vitamin C pill, 1 alpha lipoic acid/acetyl l-carnitine cap, Pristiq, Lybrel, 2 tablespoons of ground flax seeds, a teaspoon of apple cider vinegar, and the mineral powder.  I also have to take 4-5 tiny little lozenges that dissolve under my tongue once a day for 5 days (starting yesterday).

It seems like a lot of pills, but if it makes me feel better, I don’t mind.