Surgical Menopause

Getting Sex Back

In this post, I am going to tell you how I got my sex life back after surgically-induced menopause. I’ll start by saying that if you are a member of my family, you may want to stop reading.  I’m not planning to be too graphic, but I will definitely be writing more about my sex life than anyone who ever eats at a dinner table with us will feel comfortable knowing about.  But other readers – you may want to pay attention. If someone had shown me this post two years ago, I would’ve been so relieved to have it!  I hope you feel the same.

So yeah, my husband and I are having sex again, and it’s really really good.  By “again,” I mean pretty much weekly for the first time since we were married almost six years ago.  By “good,” I mean I can have multiple orgasms, and I’m 100% sure he’s enjoying himself, too. I think about sex now while we’re not having sex, and I look forward to it again after many years of not caring about it at all.

Let me go back before the hysterectomy/BSO just a bit.  Our sex life declined only months after our wedding for a variety of reasons.  We moved, had trouble settling in, my husband was unemployed, we had no money, and we fought a lot. Soon after we resolved all of that, I became pregnant, and I think we were both freaked out by the idea of having sex with our baby “in there,” so there was very little sex after the first trimester. In the third year, I suffered from debilitating postpartum depression and anxiety, and when I recovered, I essentially suffered from PTSD.  It took me nearly a year of therapy to realize that I was terrified of having sex: sex could lead to pregnancy, and pregnancy could lead to the dark abyss of PPD/A, and there was no way I was going back there. Also, I had begun to experience pain during intercourse after my pregnancy (three gynecologists were unable to diagnose it). Even though the pain was only during intercourse, I became turned off to the the idea of sexual activity of any kind. The cocktail of anti-depressants and anti-anxiety medications I was taking didn’t help my waning libido.

For a while, we just took care of our kid; eventually we moved again, and I think we became kind of used to not having sex.  It was only six months after we moved that I was diagnosed with DCIS, and within a month, I had a bilateral mastectomy with DIEP reconstruction – it was about three months until my body felt normal again and we tried to have sex.  It was clearly nothing worth reporting about; I was ok with my new body, but that same post-pregnancy pain was still there.  Then I had the hysterectomy and BSO.  As if things could get any worse – they just went downhill from there. I lost all of my libido. Before the hyst/BSO, at least I still was still turned on by Don Draper – not Jon Hamm – just Don Draper, but by this time, even the Mad Man himself couldn’t excite me. And when my husband and I did try to have sex, it was a complete disaster.

We clearly had problems with our sex life before the hysterectomy/BSO, but I believe that the steps we took to fix the problems are those that could help anyone suffering from mental blocks, pain during intercourse, and lack of libido — all effects of surgically-induced menopause — regardless of what your sex life was like before the surgery.

So, how did we fix the problems?  Well, I can tell you easily what he did – he was patient and understanding. He didn’t pressure me. At a certain point, on the advice of my therapist, I told him that sex was off the table until I could figure out what was going on with my body and my head. That way I didn’t have to feel guilty that he had an expectation of sex and I wasn’t fulfilling it. He gave me all the time I needed. Years. And here’s what I did with that time.

Internal Hormone Therapy: I started at my gynecologist’s office. I had convinced myself that all of the issues around sex were caused by the hysterectomy/BSO – both mentally and physically.  My gyn suggested two things: vaginal estrogen and a sex therapist. Despite a diagnosis of DCIS, I had already been on an oral estrogen because of my depression and mood swings, but my mother had suggested that I ask for vaginal estrogen to help with dryness (which results in pain with intercourse).  My understanding is that vaginal estrogen can be safe for women who have BRCA mutation or have had breast cancer (those who are usually told not to take oral or transdermal estrogen) because it’s basically local – it doesn’t go into your whole system.  So my doctor prescribed Vagifem.  The Vagifem creates lubrication and it does help with libido (I have no idea how it does that, but I could tell within the first two weeks of using it that I some “special feelings” down there).  But it did not help with the undiagnosed post-pregnancy pain, and it didn’t help with my new fear – the vaginal cuff.  I was terrified that my husband’s penis would rip through this wall; it was a block that I was having difficulty getting over.  Nevertheless – the sex therapist – I rejected this advice. Why?  Well, I have been in therapy pretty consistently for about 20 years, so I suspected this was something I could figure out eventually on my own and with my current therapist.  I also really really really wanted to continue to blame the whole thing on lack of hormones because of the BSO – I didn’t want to admit that we’d had some problems with sex before the surgery.  I wasted over a year going down denial river.  Then….

Myofascial Release and Pelvic Floor Therapy: In January, I began to have spasms in my abdomen that I knew was from the muscle that had been cut during the flap procedure for my mastectomy (two years earlier). I went to see my plastic surgeon, and he prescribed physical therapy.  I sought out a family friend who is a physical therapist, and she introduced me to a progressive treatment she is now doing – myofascial release (yes, the website is credibly cheesy looking).  As she performed MFR on various parts of my body to release pain, and as it began working, I told her about the pain I had during intercourse. She explained that she could also do MFR internally – through my vagina. She also taught me how to do it to myself in between sessions using dilators and other therapy tools.  After about five months of MFR on my entire body and only about two months of pelvic floor therapy, I was able to have intercourse with no pain for the first time in more than five years.  But I still  wasn’t enjoying sex (having orgasms); my libido was still low, I still had a fear of the vaginal cuff (regardless of countless affirmations by medical professionals that the cuff was indeed healed and the chances of it tearing were practically nil), and so I knew I still had mental blocks that I needed to work out.

Mental Health: Although my PTSD is a moot point now (I can’t get pregnant, so there’s no worry there), I was still having problems in my head that weren’t allowing me to enjoy sex, even though I’d received treatment for the physical pain. I won’t get into a lot of the details about all of the particular issues, but this is just to say that therapy did help me, even though it wasn’t specifically a sex therapist I turned to. The way my therapist helped me the most was that he suggested scheduling sex. After not having regular sex for nearly five years, working a more-than full-time job, keeping a household, raising a preschooler, going through a cancer scare and a year of surgeries, the death of my mother-in-law – it’s really easy to make an excuse for why “not tonight, honey.” My therapist suggested that sex on our calendar would help us stop making excuses. It might not seem like the most romantic of solutions, but we had to start somewhere.

Scheduling Sex: We decided to schedule sex on Sunday nights and do our best to keep to the schedule regardless of how tired we are or even if we aren’t in the mood. Sex is a good way to start the week – connected and happy. For the last two months or so, we have more or less kept to the schedule. This has had several positive effects. After going years without regular sex, it’s helped me to see the value of sex as a regular part of our relationship, even if it’s not spontaneous (and now that it’s better, it has become, on occasion, spontaneous, too). It’s helped me to get over my fear of the vaginal cuff tearing. And of course, I think it’s helping both of our moods a lot.  But having sex on the schedule can make it seem like just another task we do every week, like Thursday night garbage and Saturday morning laundry.  So we’ve had to spice it up.

Discussion of my “new” sexual needs: Over the last few years, after two breast surgeries and a hysterectomy/BSO, my body is different both inside and outside.  So it makes sense that the sexual activities I enjoyed before I gave birth four years ago no longer help me achieve orgasm; it took me a while to realize that I have new needs.  I know I was in denial about this – mostly because it meant admitting that I am a menopausal woman, which is something that has been incredibly hard for me to come to terms with as someone who is not yet 40 (at least, not for another year and 8 days); it’s something that makes me angry and sad every day. While this isn’t the case for all  women, for me, being menopausal means that having an orgasm isn’t easy anymore, and that my husband and I both have to work harder for me to enjoy sex. So, importantly, I had to be open with my husband about my new needs. As I sort of expected, he has been very willing to respond to my new needs.  The results – not only can I achieve multiple orgasms now, but I think about sex and look forward to sex.  Sunday is definitely fun day.

I know this is lengthy and detailed, but ever since I had the hyst/BSO, I have looked for advice like this – for someone to tell me how to reclaim my sexual identity after all of my biologically female parts are now gone.  I hope this helps someone else do just that.

Menopause and Cognitive Decline

Since I had the hysterectomy/BSO in July 2013, I have definitely felt side effects of cognitive decline.  I describe these as losing my train of thought, basic forgetfulness and confusion, lower attention span, and most problematic – word finding (I cannot remember a word when I need it, although it might come to me days later; I demonstrate this physically sometimes by grabbing at air, as if the word is hanging there and I just need to catch it).

In the last few months, I have felt like this decline has accelerated.  It’s become embarrassing in social situations and even worse in professional situations (like the other day when I nearly sent an email in which I spelled the word “nutrition” as n-u-t-r-i-c-i-a-n, and I really had to stare at it for a few seconds trying to figure out if that was correct).  These days I have to read every email I write at least five times before I send it, I am nervous about any meeting I attend because I don’t always fully understand what’s being discussed (mostly because I can’t pay attention the way I used to or I forget that something was already said five minutes earlier), and I worry that my students can tell that I’m not confident when I enter the classroom.  When I talk to other women about this, they agree – after having undergone surgical menopause or having gone through natural menopause, they feel DUMBER (yes, I know that’s not a word, but it so aptly describes what I feel both by showing and telling).  Despite this, all doctors I’ve spoken with repeat that there is no medical evidence to demonstrate that cognitive decline is an actual side effect of surgical menopause in women my age.

The largest study of cognition in women who have undergone menopause was one done in France over ten years ago.  Women age 65 underwent several tests and it was determined that, yes ideedy – they did experience cognitive decline, and the earlier they started menopause, the worse this decline was after age 65.  This report from May of this year looks at that study again to look specifically at dementia.

There are a few things about this newer report that I am disturbed by.  One, of course, is confirmation that after 65, I will certainly experience cognitive decline, even if what I’m experiencing now is jut “all in my head” or is related to something else entirely (my PCP has reduced my dosage of Topamax, which I take for migraine prophylaxis; she feels this could help since among its main side effects are speech, language, and memory problems).

What I’m even more concerned by is that this study is old already, and it’s a study of women who for the most part went through menopause naturally – thus, they are 65 years old.  There is virtually no data on cognitive side effects for women who go through surgical menopause, particularly at a young age:

in terms of surgical menopause, these results suggest that further caution should be used when recommending ovariectomy [oophorectomy] in younger women, and the potential long-term effects on cognitive function are a component of the risk/benefit ratio associated with such surgery

So we know the potential long-term effects, but what about short-term effects?   This sort of study needs to be done as well.  At a recent meeting of my local FORCE chapter, a gynecologist who specializes in middle-aged women and menopause management explained that women, especially those who are under the age of 40 (like me) who undergo surgical menopause are at much higher risk for bone problems and heart disease.  There is research to demonstrate this, she said.  But when I asked about cognitive side effects, she admitted that while she hears from many women who visit her that they feel they are experiencing cognitive decline, she explained that there really is no data to support that this is actually the case.

In fact, she went so far as to imply that this feeling I’m having is psychosomatic.  Here was her analogy.  Most women don’t remember the hundreds of times in their life that they get their period.  But any woman remembers the time she got her period when she was at the beach and it nearly ruined her white swimsuit.  After that, any time she’s at the beach, she’s slightly nervous about getting her period, even though she’d always had that risk before that one time it actually happened.  So what this doctor was saying was that perhaps I was experiencing cognitive decline before I had the hysterectomy, and I am just associating it with the hysterectomy/BSO because that is when I started to really notice it.

Nope.  Not buying it.  I’m sorry if it sounds arrogant, but I am a pretty high functioning intellectual person.  I am a big ditz when it comes to a lot of stuff – ask my husband; he probably has a blog about it hidden somewhere.  But I have a PhD in the teaching of writing, which essentially means, I have a the highest degree you can obtain in THINKING and COMMUNICATING WHAT I THINK and teaching others how to do that, too.  I do research, I read complex books and complicated articles, I present my work at conferences, I teach lots of students and grade papers, I run two programs at a large state university, one that requires me to train other faculty in how to teach writing and the other that requires me to be responsible for over 3000 students and their writing curriculum.  I know when something’s amuck in my brain, when it’s time to take a break, when I need a chocolatey snack or a nap.  And I know that I didn’t get DUMBER until after I had that surgery.

What bothers me the most about this is that the doctor said she hears this all the time!  But there’s no data to prove it’s true, so therefore it must be in our heads?  More hysterical women.  Instead, how about collecting some data?  How about taking some interviews from these women?  How about replicating the French survey from ten years ago but doing it on a population of women who’ve undergone surgical menopause before the age of 40?  There are many of us – not just BRCA positives, but lots of women who’ve had hysterectomy/BSOs for endometriosis and a slue of other reasons.

When I was making my choices about preventative surgeries, there was obviously a lot to weigh.  My doctors told me what I might face once I underwent the removal of my ovaries – higher risk of heart disease, bone loss, night sweats, hot flashes, mood swings, hair loss, weight gain.  I didn’t blink an eye at any of these knowing they’d be better than risking ovarian cancer.

But if someone told me I might become a blithering idiot who no longer felt like she could function with her colleagues and peers, could no longer do the work she’d spent over 30 years preparing for, her life’s calling, to teach — well, that definitely would’ve made me think twice, at least back then when I could think straight.

Whine Me a BRCA+ River

There has been a lot of talk (research published has spurred some conversation in Facebook groups that I belong to) about whether BRCA2+ women should be screened for pancreatic cancer.  Up until recently, it was thought that BRCA2+ women should worry about breasts and ovaries, while BRCA2+ men should worry about prostate and pancreatic cancers (among others).  My father’s brother, who was BRCA2+ like my father and like me, died from pancreatic cancer five years ago – he wasn’t yet 60 years old.  A friend of mine from my FORCE group has had a lot of family die from pancreatic cancer.  She and I have talked about these research developments a lot – well, not so much talked, just sort of mumbled, “are you gonna get checked” and then whined in reply, “I don’t want to get checked.”

I confess I’m the one whining in that “conversation.”  Why?  Because 2013 was my year – that was my year to get this all done.  I had the mastectomy, the hysterectomy and BSO, and the breast revision.  I started in January and finished in December.  See there – I said “finished.”  Because I don’t want to do this anymore.  This past January – the 2014 January, I was supposed to see my breast surgeon for an exam.  I’m supposed to do that every year.  But I didn’t because I am finished.  And yes, the part of me with a brain knows how stupid that is, but the part of me that felt the exhaustive weight of impending cancer for 30some years feels like I deserve a year off.  I deserve this year – 2014 – to not have to be examined.

And even though I did have a check by my gynecologist and a pelvic ultrasound in June (this was because I was having actual pain, which turned out to be nothing – as in – it’s pretty weird to get an ultrasound and see nothing, emptiness, zippo, in a space where you not only once could see organs, but also once saw your baby) I am determined to make it through the rest of this year – 65 more days – without being scanned or tested or evaluated for something BRCA related.

As it turns out though, I’ll be back at it full force in 2015.  I’ll get to have that breast exam for sure.  And I’ll get to look into a cardiologist to start monitoring my heart.  Not only do I have heart risks because of my RA, but I learned at our FORCE meeting on Saturday that because I had my ovaries removed at such a young age, my heart disease risk is particularly high due to surgical menopause.  And lest I forget, I’ll be getting that pancreas checked, with a big ole dose of whine included.

 

More Surgical Menopause Side Effects

For the past few weeks, I have been dealing with two frustrations, and I wonder if they are side effects of surgical menopause.  The first is migraine headaches.  I began getting migraines in college.  When I was 20, I had sinus surgery (including fixing a deviated septum, removal of turbinates, and some other digging around in there).  Being able to breathe through my nose for the first time in my life seemed to help these headaches, and from that point on, I only got them during my period and even then, not every month.  After I had my son two years ago, I didn’t go back on birth control pills.  The migraines increased in intensity during my period and they occurred consistently every month for the entire week.  They were controllable with Imitrex.

Since I had the hysterectomy at the end of July, I have woken up with a migraine almost every day.  If I don’t wake up with one, then I usually develop one by the end of the day.  I’m popping Imitrex like Tic Tacs, which I don’t think is necessarily a safe thing to be doing, but it’s allowing me to get through the day.

This morning, I woke up with a migraine, took an Imitrex, and got ready for work.  During my commute (just over an hour drive), the headache still wasn’t gone; I began to feel my eyes getting tired and I became nauseous.  I took a second Imitrex and by the time I arrived at work, the headache was gone.  Nonetheless, I decided I had to call Dr Balk.  She suggested switching my estrogen patch to a once weekly, rather than twice weekly.  I didn’t really understand how this is supposed to help, but I’m going to try it anyway.  The prescription is waiting for me at the pharmacy.

The second frustration I’ve been dealing with is my teeth.  I don’t have the best dental hygiene, I’ll admit.  But I’ve always had nearly perfect teeth – no cavities, and every time I go to the dentist, I get complimented on them.  I was just at the dentist in May and she said everything was perfect as always.  But, since the surgery, my teeth have been killing me!  All of my molars hurt when I bite down on almost anything.  This is quite frustrating because I love to eat apples and I can barely chew them right now.  My mom suggested I switch to Sensodyne toothpaste, and I did a few days ago.  I’m going to give that a week or so and if nothing changes, I’ll head back to the dentist.  What I’m most concerned about is my teeth cracking to bits – when I looked up “teeth sensitivity” on Hystersisters, several women reported their teeth just falling to pieces during menopause.  I can almost guarantee that if my teeth start falling out, I will be asking for my ovaries back!

In other news, the results of my bone density scan are back – everything is normal.

I’m Literally Hysterical (and yes, I know what “literally” means)

There’s an epidemic, it seems, of people not understanding the words “literally,” “figuratively,” and “ironically.”

I know the difference, and I can tell you that I am LITERALLY HYSTERICAL!  It’s common knowledge (I think) that the word “hysteria” has its root in the word “hysterectomy” – hysteria was a word used back in the olden days to describe women who’d had babies or uterine problems and then had severe emotional reactions (like postpartum depression or menopause).  Some women did in fact go insane.  I mean, in the 18th century, they didn’t have things like estrogen patches or vaginal creams.  But they did have asylums.

So when I say that I’m literally hysterical – I am.  I am having a rather major emotional reaction to a disturbance in my uterus (its removal).  Really, the reaction is to the removal of my ovaries, but I wonder if 18th century “doctors” really differentiated between parts ‘down there.’  What I’m talking about is the type of reaction we often see on sitcoms – there’s a pregnant character, she’s concerned about her appearance (of course, thinking she looks fat, which she is, because she’s carrying a BABY for chrissake), someone compliments her on her shoes,  she bursts into tears, cue laugh track.

Only it doesn’t feel funny when you’re the crazy hormonal lady.  I spent most of yesterday rather weepy for no real reason (other than the apparent disappearance of estrogen in my body).  I teared up when leaving my son at school – it was his first day in a new class at preschool.  This was not a milestone like kindergarten or anything – just a new classroom at the same school he’s been going to for over a year.  He handled it much better than I did.  I read on Facebook that an actor from a TV show I watched committed suicide – burst into tears.  This is not something I would normally give a second thought to.  The real event happened at CVS.

I won’t get into too many details here because reliving it just annoys me.  Basically, my doctor called into CVS an estrogen patch to help me deal with this weepiness.  When I went to CVS to pick it up, they told me they didn’t have it in stock.  They’d have to order it – it would be at least 24 hours before they would have it.  And there it went – all of my hopes at some relief down the toilet.  I pretty much lost my mind – I mean loud sobbing – people in other aisles definitely heard.  And, while the clerk (the woman who rings up the prescriptions) offered me some tissues, and the other clerk (the one who checks the insurance information) called around to different pharmacies to see if they had it, the pharmacist himself did everything in his power to avoid even looking at me.  Eventually, one of the clerks suggested I call my doctor to see if there was anything similar she could prescribe that maybe the CVS did have in stock.  I did this while the pharmacist, from whom I was standing about two feet, continued to ignore me.  I became more and more hysterical throughout the process – it was his job to suggest an alternative, his job to call my doctor and get a different prescription – as a human, it would have been nice to ask me if I was ok, even though I suppose that’s not really his job as a pharmacist.  I did leave there with an estrogen patch, and I suppose that’s really the most important part of the story.  I put it on in the car in the CVS parking lot.

This is a situation that would probably not have bothered me at all had I not already been an emotional mess.  I would have just come back the next day and picked up my meds.  But I was sobbing like I just experienced a death of a loved one.  Eventually I did calm down, and I was able to go on with my day – do some errands, cook dinner, pick up my son at school.  I did begin crying a bit during his bed-time routine; just saying I loved him and missed him during the day made my eyes well up.

I can’t say I’m noticing any difference now that I’ve been wearing the patch for about 18 hours.  I had an absolutely horrible night of sleep – I had trouble falling asleep, I had trouble staying asleep,  I woke up twice screaming from nightmares, and by 5am I had a  migraine.  So I’ve felt a bit on edge this morning, but I’m guessing it’s from lack of sleep and not from lack of patch efficacy.  What I don’t understand is this – how do you know if the patch is causing  side effects, or if it’s the menopause causing  problems, and thus you actually need more estrogen?  Was my bad night of ‘sleep’ caused by the patch, caused by menopause, or caused by something else entirely?  I can tell this is going to be some trial and error, which makes me nervous.   I start back at work today (after summer break) and I cannot mess up at work – this year I will become a very public face at my university, and I don’t want that public face to be smeared with tears.

And, I don’t know how much of this my family can take.  My husband, I will say, has seemed to come around a bit.  While it didn’t seem that he was taking this very seriously, I think the last few days have shown him that I’m sort of a ticking time bomb.  Last night he was really good at trying to mediate some stressful situations with our son – when the poor kid bit his tongue during dinner and started to cry, I almost lost it too.  My husband jumped in so I could take a breath, and I was grateful for that.

What worries me the most though is my son.  So far, I’ve managed to take out any hysteria on grown-ups.  But I worry that if he’s crying or misbehaving or just being his toddler self, that I might freak out on him, even though in the two years of his life I’ve never raised my voice to him once.