Hormone Replacement

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.

Existential Crisis

I took a little break from this blog.  Actually, I took a little break from all things BRCA related.  I hid all of the Facebook groups I belonged to, logged out of my @bloggingbrca twitter feed, and stopped reading blogs.  Why?  I was becoming kind of obsessed.  It was all I was thinking about.  And I had all this surgery for precisely the opposite reason – so I could stop worrying about all of this.

Part of it was an ego thing too.  I started reading some blogs of BRCA+ women who’ve been writing for years and years – some of the first people who went public online about their BRCA status and prophylactic mastectomies.  I saw all of their followers, comments, likes, their press releases and news interviews (although I should say, only about three people of my friends/family know about this blog, so I’m losing out on a lot of traffic right there – if only I’d let my mom in!).  I began to wonder if I really was adding anything new to this conversation, or has it been going on without me for a really long time.  What is my point here?  I was having an existential dilemma about blogging.  Kinda pathetic.  And then there was all of this news about whether DCIS is really cancer.  I started to feel really embarrassed – I have said I had breast cancer, when maybe I didn’t really.  I always mention it was only stage 0 (and I add that this is why mammograms are so important!) and that I had no treatment, so it was practically nothing.  But I started to feel displaced – survivor? previvor?  I’ve said I don’t like either of those terms and I don’t use either to describe myself.  But even if I wanted to claim one, I don’t know which one I am.

So I took a break from the whole thing.

Obviously, I’ve decided to come back though, and there are two main reasons.  The first is that I do want to help other people, and if any one person reads this and comes away with something useful, then I’ve done my job.  The second is purely selfish – it’s cathartic, and it helps me exercise my writing muscles.  Right now, I should be reading student papers and responding to them, or I should be doing research and writing about it.  But I’m not.  So I need to keep my muscles moving – my brain to my fingers to the screen.  And I do it publicly for the first reason I mentioned.  It’s kind of a cycle.

When I last wrote, about three weeks ago, I was headed to see my gynecologist and the surgeon who did my hysterectomy.  Both appointments were sort of deflating.  Dr. Balk said I could stay on the estrogen patch for a few years, and we’d keep evaluating.  She said I should get used to the idea of having mood swings.  As someone who’s been on antidepressants for almost 20 years now, that’s not something I really want to get used to.  I like the somewhat numbing feeling I get from my meds.  I like that I can have rational emotional reactions to things and not get hysterical.  So that upset me.  My appointment with Dr. Sukumvanich was even worse.  He basically just gave me a rather quick and far from friendly pelvic exam and said “see ya later.”  He answered my questions very cursorily – I asked him about all of the items listed on my pathology report and he said that none of them indicated cancer and that’s all he cares about.  Ok then.

In the meantime, I’ve started having a lot of sadness when looking down at my belly – my poor, tortured belly.  I have the hip to hip incision with its lumpy purplish scar tissue; three small scars from the hysterectomy instruments; a scar all around my belly button, which is now long and thin and seemingly bottomless instead of round the way it used to be; stretch marks from being overweight, carrying a baby, and having my whole abdomen stretched during the DIEP procedure; an estrogen patch; small squares of residue and dirt from where the previous estrogen patches were (nothing seems to remove this residue).  I just feel like my belly has become the center of everything.  My pants don’t stay up, my underwear digs in, and in the evening after I’ve been running around all day, I am sore like my stomach is being squeezed.  It’s sad.  I feel sad about it.

On top of that, I’ve been having this strange sensation of hot fluid running through my right breast.  It feels like there’s lava in there flowing back and forth from my breast to my armpit.  I emailed Dr Gimbel about it and he says it’s probably nerve regeneration.  It’s a really bizarre feeling that happens several times a day.

In good news – we moved into our house.  Yes, we finally own a house.   It’s been really nice, and we’re looking forward to fixing it up a bit.  Our son is thrilled to have his own toy room filled with all of his trains, and we are happy to have central air conditioning!

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.

My Other Personality

Today is three weeks since I had all of my reproductive organs removed, thus the end of my hormone production.

The last week has been a bit like having a split personality disorder.  There is the normal me who hangs out with family, reads, writes, goes places, generally enjoys life (although is pretty well medicated on anti-depressants and anti-anxiety meds; but they work, I feel, to make me the person I could be if I didn’t have a brain chemistry defect).  Then, there is evil crazy bitch (ECB).  ECB has reared her ugly head four times in the last week or so.

Episode 1:
Toddler won’t go to sleep.  Husband and I argue a bit over how to get him to sleep.  He finally gets to sleep.  Husband says to me something about not yelling at him (husband) while trying to get toddler to sleep.  ECB shows up, screams profanity at husband, scares husband into leaving room, texts husband not to ever come back to room.  Husband sleeps on couch.  ECB/I sob for about an hour, then toss and turn all night feeling simultaneously sympathetic and furious toward husband.  I wake up as myself and we have a completely normal morning.

Episode 2:
Husband perceives that I say something to him in a not nice tone.  Husband says, “That wasn’t really a nice tone to say that in.”  ECB appears, screams profanity at husband, scares husband into moving as far over to the other side of king size bed where he hides until we both fall asleep.

Episode 3:
Mother tells me I am talking too loud on my cell phone while in the car on the way to Whole Foods.  ECB begins to scream at mother about years of criticizing.  Father cuts in and tell ECB and mom to stop.  ECB/I sob behind sunglasses while walking through Whole Foods, avoiding mother and father.  Silence in car on the way home from Whole Foods.  ECB/I sob for another hour or so alone at home.  I come out of bedroom as myself later to cook for the FORCE picnic we head to that afternoon.

Episode 4:
Husband and I take son to playground.  I criticize husband’s parenting in a rather mild way.  Husband walks away from me and son, sits on bench, pouts, and gives me silent treatment.  I ask husband what’s wrong.  He continue silent treatment.  ECB tells son that we’re leaving the playground now, storms off to the car leaving husband to collect confused toddler, sobs the whole way home, continues to sob for a half hour alone in bedroom, gets in car and goes to Starbucks to eat/drink copious amounts of chocolate.  I return home as myself about an hour later.

Seeing a pattern?  None of these are things that would normally upset me.  I mean, I’d be annoyed that my mom criticized me or that my husband was giving me the silent treatment, but I’d deal with it, usually by talking it through, and then it would be over in minutes.  These are episodes that last at minimum two hours, with uncontrollable sobbing (during which I think, “What have I done?  Why did I do this to myself?   What if I’m like this from now on…. forever?”).  And then, after I get ECB out of my system, I return to my normal self.  At that point, I usually agonize a bit – do I need to apologize for ECB?  Is ECB really my fault?  

I have an appointment with the hormone/menopause specialist, Dr Balk, on Wednesday.  My mother insisted I need help sooner than that  (a conversation that necessitated all of my power to restrain ECB) and I did just talk to the nurse.  Dr. Balk doesn’t see patients until Wednesday, but the nurse will call her to see if she thinks there’s anything we could start now.  Both the nurse and I seemed to agree that waiting until Wednesday so that I can have a full conversation with Dr Balk directly would be better.

Also, this morning there was a slight pink tinge on the toilet paper I used after I peed.  I’m not expecting that to be anything of any importance since I was told spotting could be normal, and that’s not even really spotting.  But, in the spirit of recording what’s going on, there you have it.  Pink TP.

Third Opinion on HRT

Dr. Sukumvanich said “no hrt.”  Dr. Brufsky said “yes hrt.”  So, I sought a third opinion to try to see if I could get a majority vote on one side or the other.  These are my notes from meeting with Dr. Balk.

HRT?

There’s no right answer – risks v. benefits; because of history of BRCA and DCIS, there is a risk of recurrence of breast cancer.   Does estrogen alone increase risk of breast cancer? – probably not.  Hormones could react differently for a BRCA carrier, but that hasn’t been studied.  Would put me on estrogen immediately if I hadn’t had the DCIS.  I’d rather have cancer than go through the PPD symptoms again.  Mood – will estrogen keep my mood stable? – yes.  Four-fold chance of having depressive episode after surgery after having PPD.  Surgical menopause – will lose hormones immediately (within three days) – loss of testosterone can affect well being/mood/libido.  Mood change can happen very quickly.  Pros of hormones — mood, cardiac benefit, bone health.  She leans more toward to giving me the estrogen – benefits outweigh the risks.  Short course for a few years of low dose.  Transdermal estrogen is better (patch, not pill) — don’t increase triglycerides, don’t raise clotting proteins, more natural, steady sustained level — medium dose patch

Other options

Possible that the Viibryd I’m already on could work for hot flashes.  Effexor is an option.  Lifestyle modification for cardiac health.  Acupuncture – well studied for hot flashes, helps with sleep.  Was the PPD more psychological than hormonal – because I was on an ineffective anti-depressant.  Balk does the acupuncture – she will do it for me.  Yoga, hypnosis, mindfulness stress reduction.

Eating Soy

Minimal effects.  Don’t actively get a lot of it, but don’t avoid it entirely.  Tofu maybe once a week.

Fruits + Veggies, then whole grains, then proteins

Next step:

If I sink into the abyss, call Dr. Barwell (psychiatrist) first.  Then, call Dr. Balk and she’ll prescribe a patch over the phone.