Next in the “focus on the body to avoid other things” series: sex, pain, and interstitial cystitis

I couldn’t sleep last night, but I had a feeling that most of my “insomniac buddies” that I can text in the middle of the night were sleeping (yay!) or busy, so I just started reading things online.  I came across this fantastic series of letters-to-myself about painful sex due to vulvodynia and/or vaginismus.  I had never read a first-hand account of chronically painful sex. It was an emotional experience for me, because I had never had a helpful discussion about it.  Actually, this is my first time narrating the whole story in any way.

Dyspareunia is the medical term for “painful intercourse”–it’s a symptom, not really a diagnosis.  I suffered from it for a good ten years. I think it was partially psychological from the beginning, but the underlying physical condition (interstitial cystitis) is real. Over time, the nature of the problem becomes all mixed up anyway: a purely physical cause makes sex horribly painful, and/or you consistently suffer afterwards. and eventually it becomes frightening and/or not worth it.

When I was a little girl…I really have no idea how old, but I want to say somewhere in the 7-11 range…I got urinary tract infections.  I remember the pain, I remember a particular episode during which I was walking down the stairs at my church, and I had a little bit of leakage.  I don’t remember what my pediatrician said about it, or how many infections I got–just that I stopped taking baths and switched to Ivory soap, and the problem didn’t return until I became sexually active.

I was able to “successfully” have sex on my first attempt, and it was a positive experience with the guy I ended up marrying.  The next day, however, I experienced hours of horrible pain.  It was basically like having a bad urinary tract infection.

We were long distance for six years, and this happened literally every time we saw each other.  I couldn’t leave the bathroom, because I’d end up back there a minute later.  The urethral pain was pretty severe, but the pelvic pain wasn’t that bad. I’d also get very temporary relief from tiny contractions (like the tail end of an orgasm).  The urethral pain caused the hairs on my arms to stand up and my hands to cramp up.  My body would involuntary bear down, so I’d end up with diarrhea.

Sex was the only thing that triggered this–although I did (and still do) get some urethral pain when I’m dehydrated.  I can only remember one time from the time I was 18 that I had a UTI that wasn’t triggered by sex.

The idea of having a visit with my boyfriend without having sex 2-4 times a day never occurred to me.  I wanted to have sex, although I would have preferred even at the time to only have sex once or twice a day.  (Long story, but the germane point is that I didn’t feel I could speak up about it or say no).

I don’t think I actually saw a urologist about this until 3-4 years later–I think I just suffered, worried about my fundamentalist parents figuring out that I had “honeymoon cystitis,” and took Prodium (that OTC med that turns your urine DARK, STAINING ORANGE, but helps the pain).  He prescribed Macrobid (an antibiotic) to be taken prophylactically each time I had sex.  I was on the pill, and we were each others’ firsts, so we weren’t using condoms.  Some antibiotics can reduce the effectiveness of the pill–when I brought this up with him, he just scoffed at me.  I got the sense that he had never heard of this, so I was afraid to take it.

By the point at which we finally lived within 2 hours of each other (6 years into our relationship, and an hour after moving here), I did actually start taking Macrobid before/after sex.  And it worked.  The only time it didn’t work was when I flaked and forgot to take it for 7 hours afterward.  I ended up seeing another urologist here in order to get more Macrobid; he ordered another IVP and cystoscopy (YEEEEEEEOW, but still better than a UTI).

Once in a blue moon, I’d try to have sex without taking the antibiotic.  I got urinary tract infections every. single. time.

My sex drive disappeared completely somewhere in there.  It started within a year of us living near each other–but that was also within a year of me finding out he had “minorly” cheated on me for years, and when I reached my highest weight. It was almost completely gone by the time we got married…but I was also anorexic by then.  By that time, sex was also very difficult and painful.  It was hard to “get started,” but it rarely (then never) didn’t hurt all the way through…and then there was the soreness after.

I tried therapy.  We tried therapy–although not with a specialist.  Over time, we just kind of delegated the “problem” to me, and my GP prescribed testosterone for low desire (there is no accepted, normal testosterone levels for women, but mine was so low that we couldn’t even get a number). I had to go to a compounding pharmacist for it, and it was a cream I put on my upper, inner thigh.  It didn’t work.  I was anorexic, so my hormones were fucked up, but I also didn’t have a lot of support beyond him not cheating on or leaving me despite my apparent frigidity. I saw a female ob/gyn and tried another round of testosterone, but the cards were probably still stacked against it.

Eventually, I gave up. Nothing worked, I didn’t even WANT to have sex, my husband wasn’t particularly determined to get into the trenches with me to work on it together, and it was SO nice to not have urinary tract infections.

We started having sex again in 2008, when I wanted to have a baby, and I actually look back on that period fondly.  It was fun, and I felt close to him although it wasn’t painless. I got pregnant right away, but I had a small bleed at 7 weeks.  That same day, we saw the heartbeat.  A few minutes later, I found out that my HcG had dropped.  My ob/gyn put me on vaginal progesterone suppositories (which itched, burned, and made a huge mess that made me feel disgusting), but my only hope was that it was a case of “vanishing twin syndrome.”  A week later, no heartbeat.  I had a D&C, and I waited three months to start trying again. I got pregnant on my second cycle, but I lost that one as well.  I declined a D&C, but my body wouldn’t get the memo.  On the day I was supposed to get a methotrexate shot, I finally passed the gestational sac while teaching my 7th and 8th grade chorus (I figured I’d be less unhappy at work among people).

I had to stop trying and get a full “recurrent miscarriage” workup, of which I only remember the endometrial biopsy and getting 24 vials of blood drawn at once.  The only things that came up were a “luteal phase defect” (which is controversial), and I tested positive for anti-nuclear antibodies.  Off to the rheumatologist I went–nothing further came up, but I was put on baby aspirin just because it’s pretty low-risk.  I was also put on Clomid.

Clomid is notorious for drying up your natural lubrication, but most kinds of lubricant inhibit sperm.  The decent ones, at least, do.  I got this sperm-friendly stuff called Pre-seed, but it suuuuuuuuuucked.  Sex was painful.  It wasn’t fun anymore. Actually, it wasn’t fun after the first pregnancy, because that loss, the D&C, all of it, took away the “innocence” of just getting knocked up and having a baby.  By this point, I’d have rather nothing prodding me in any way.

I think I did three Clomid cycles.  I dropped an egg, but I didn’t get pregnant.  I’m sure it’s because of the side effects.

My point in detailing all of this highly personal medical stuff is to paint a picture of my relationship to my own reproductive organs.  I became alienated from them.  They didn’t work the way they were supposed to, things rarely turned out well when something was put into my vagina…which was a seemingly constant event.

I went to a reproductive endocrinologist.  He said my recurrent miscarriages were idiopathic (shitty luck), and he had me do monitored cycles with injectables.  That means I injected myself in the stomach twice a day leading up to ovulation, had sonograms every morning for 6-8 days in a row, and then got a “trigger” shot to make me ovulate.  The next day, we’d do IUI, and I’d start on progesterone (this time, it was a different suppository that was non-irritating, but it made me shed stuff that resembled spitballs for weeks after I stopped it).

I lost this one, too.  I had another D&C, and then after the three-cycle wait, we all got together.  He gave me two options: IVF with pre-implantation genetic testing (to find the best embryos to implant), or giving IUI one last shot.  We chose the latter.  He told me that he understood that I wasn’t feeling optimistic about my chances of having a baby, but he said he would be optimistic for me.

It worked.

For all four pregnancies, I wasn’t allowed to have sex first trimester (until 14 weeks in), because I couldn’t take Macrobid.  Six weeks into second trimester (which had also been chaste), I found out I had complete placenta previa.  I wasn’t told “no sex” until my first bleed, four weeks later.  We missed our window, and now having sex could literally kill myself and the baby (by causing a catastrophic bleed–unikely, especially since I wasn’t allowed any further than 20 minutes from the hospital with a Level 3 NICU at which my ob/gyn had rights, but still a small possibility).

My delivery was somewhat traumatic because it was so unexpected.  Having a kid in the NICU for 6 weeks was traumatic, stressful and exhausting even though I knew she would live.

I pumped–15-20 minutes every 2-3 hours round the clock…nine times a day total.  I did this for 18 months (although I was down to 5 pumps a day when I returned to work).  Pumping makes you even drier than Clomid.  I don’t care what magic lube existed, or what anyone might thing: sex would have been impossible.  The thought of how it would feel actually frightened me.

So…yeah.  Somewhere in the psychological/relationship stuff, the urinary tract infections, the exhaustion…it was almost three years.

Then he said he didn’t know if we could work out longterm if our relationship was sexless.  We started having sex again. I went to a urologist who specialized in women, and it turns out that I wasn’t having urinary tract infections. I had interstitial cystiitis, which tended to be chronic, but there was a new medication that could help.

He left me ten weeks after telling me he was unhappy, and I didn’t have sex for 9 months after that, but I did a course of Elmiron. When I started having sex again (in a monogamous relationship), I took Macrobid.  It was also a long-distance relationship, so we tended to have sex in clusters.  However, I did start to experiment with skipping it, and I managed it at least a handful of times.  I always seemed to *know* when I could skip it.

We broke up 5 months later, and I’ve been dating on and off since then, but I’m still following the regime of taking it when I think I need to and skipping it when I don’t.  I’ve done amazingly well.  I seem to do okay skipping it if I didn’t have any pain/dryness during sex, I only had it once or twice within a day, and I just generally don’t feel worn out afterwards.

I should mention: my urologist doesn’t want me to take an antibiotic every time I have sex, because I could develop resistance to it.  However, it does help prevent flare…I think it does this by making the urine less acidic (therefore less painful to pass).

I don’t know if there was something physically that made me so susceptible to flare-ups (UTI symptoms) with my ex, or if it’s the medication that made the difference.  I also don’t really have a neat answer to “what happened” to make our relationship a sexless one.  I just know that I’m able to love sex now more than I ever did–combination changes in my 30s (emotional AND physical) that make it better and the ability to dissociate sexual pleasure from unwanted pain.   I had dated a couple guys in college during the year we were broken up, but most of my painful sexual experiences had been with my ex just because the overwhelming majority of them–good and bad–were with him. Maybe one of the good things about breaking up and starting over was the opportunity to break that association/conditioning.

I do have pain from time to time.  I’ve done a terrible job of staying hydrated this summer, and I’ve been feeling it lately.  I also drink and eat all the things you’re not “supposed” to eat to minimize flares.  I’m having pain right now, actually, in the absence of recent sex…which is nearly unheard of.  I’ve taken Prodium (the pain reliever) three times in the last couple weeks, and I had probably only taken it twice in the year before that. I’m actually thinking I need to go back to the urologist.  She wanted me to do two rounds of Elmiron, but I only completed one.  It’s a pain, because you have to take it 3 times a day on an empty stomach, but it did seem to help tremendously.

Anyway, that’s my story of going from “paying for it any time I had sex” to shutting down a large, normal aspect of life as a human to being able to get back and enjoy what was missing.


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