Almost 2 years post-op

I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.

It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.

And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.

I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.

Monday Share – Lets talk about sex.

I’ve brought up my difficulties with sexual intimacy–particularly penetrative intercourse–here before. But I haven’t talked about it in quite some time, because quite frankly I haven’t had any interest in sex in a very long time.

But I read this BuzzFeed Article What It’s Like To Date When You Can’t Have Sex the other day, after it came up on my Facebook feed, and it made me want to speak on the topic again.

I related to the article so much. And not that I’ve really dated with my conditions (did I ever mention Mr. Liar was my first, and only, boyfriend?) but the feelings of inadequacy, disappointment, and fear resonated with me. I know those feelings. I’ve struggled with them, as has been seen in early posts here. And I’ve slowly come to terms with them.

Mr. Liar and I have had penetrative intercourse once in the past year. That’s once since we’ve been married. It was about six months after my surgery, and thus about six months after our wedding. And while it didn’t hurt nearly as bad (I didn’t cry!) as before the surgery I still wouldn’t describe it as all that pleasurable or pleasant for me. (I suspect I have vulvodynia as well as my other conditions). Now, we do have other intimate relations, but generally as far as sexual contact goes, it is almost always something I do for Mr. Liar (whether that is me bringing him to orgasm, or him attempting to bring me to orgasm–something he really enjoys doing, but doesn’t happen often), because I just don’t find it all that enjoyable. After years of excruciating pain and hormone “killing” medications, I have almost no interest in sex. I hardly ever get aroused, I don’t find orgasms all that great (I mean, at most they’re ok) and I have tons of visceral negative memories that come rushing up–even if Mr. Liar has never pushed me or been anything other than amazing and supportive. In all honesty, I would much rather have a nice shoulder or foot massage. And recently I have come to terms with that and made it clear to Mr. Liar, which I think has helped us both. It has helped us with a sense of balance and reciprocation–because I love making Mr. Liar feel good, and he loves making me feel good, and now we can both do that in a way that isn’t just about sex. It is still intimacy. And it is wholly relieving.

That isn’t to say that I don’t still have the occasional fears regarding sex or penetrative intercourse, like: trying to conceive one day and what that might entail. But it is incredible knowing I am loved for who I am, and what I can give, not what social media has made me think needs to be a part of my relationship.

 

Worse Appointment Ever.

I met with the reproductive endocrinologist, Dr. E-H, today. I almost jumped across the desk to punch her. I’m still too angry to write the whole thing out, but I WILL NOT go back to see her again!

The gist of the appointment went like this: I get taken back to her office. She starts talking about my referral notes saying I was being sent to her for osteopenia following chemical menopause to treat endometriosis, and she has my bone density scan results. And that’s were things stop going well.
ALL she wanted to talk about was my endometriosis. Which was NOT why I was there; I was there to address bone density loss- which I actually had before starting the aromatase-inhibitor – the letrozole didn’t make it go down that drastically. So she starts asking why I got of the letrozole, which I tell her is because I ran out of pills and my new insurance doesn’t cover it. Then she starts pushing lurpon. –insert collective groan–

I tell her I WILL NOT, under any circumstances, go on lupron. I don’t believe it is a sound choice for managing endometriosis, and the only reason I agreed to go on the letrozole was because it makes more sense than just shutting down the ovaries, since the endometriosis lesions can produce its own estrogens whereas lupron is a GnRH-atagonist and only shuts down the ovaries. So she tells me, “endometriosis can be activated by the ovaries so shutting them down works, and letrozole doesn’t get rid of all the estrogens either.”  Which, may be technically true, but it just because both don’t suppress all the estrogens you produce, that doesn’t mean lupron an attractive option.

So then I tell her that I don’t know how my periods will be, since I’ve been on it since I had the surgery, and the excision of my disease should have removed it. She decides to tell me the disease can’t be removed completely, and I answer that that is controversial. Her reply, get this, “No it isn’t. I research endometriosis”

.. Okay BITCH. I’m no stranger to research, and while I may not conduct endometriosis research 1) I DO have a Master’s of Science in Reproductive Physiology, so I’m not clueless, and 2) stay as up-to-date as I can on contemporary endometriosis research. And I haven’t seen your name anywhere. And I’ve seen data from surgeons that shows 0 recurrance of the disease that has been properly excised (thank you to all the talented surgeons and researchers who share their data and opinions on EndoMetropolis) AND 3) JUST BECAUSE YOU MAY CONDUCT RESEARCH IN SOMETHING DOESN’T MEAN YOU KNOW EVERYTHING ABOUT IT. I’m a PhD student – I clearly know a thing or two about research. You can’t tell me any researcher knows everything about a particular topic. And anyone who does, I know is full of bullshit.

So I’m FUMING by now. And she looks at me and goes “Well I don’t know what you want me to do, why are you here?”
UM. Because a doctor I trust thinks I have loss too much bone mass for my age, and thinks why should be investigated. Because of the OSTEOPENIA that the referral said.

So she starts talking about how if I go back on letrozole, she’ll have to add back some estrogen. And I tell her, again, that I won’t be going back on the letrozole because my insurance doesn’t cover it (I think I told her that at least 4 times).

She repeats “Well I don’t know what you want me to do.”

ARE YOU FUCKING KIDDING ME?!?!

So she finally agrees to check my parathyroid hormone (PTH) levels, since my thyroid panel was just checked and came back normal. And “your thyroid or parathyroid hormone usually are the cause of bone density loss, I’ll run the PTH but I think it will come back normal. So if you go back on letrozole to control your endometriosis I’ll have to put you on some estrogen and progestrone too.”

o.O

What great listening skills she has.

THEN, to top it all off, she asks me and A (he drove me, because he’s the best and the appointment was an hour away) if we’re planning on having kids anytime soon. No, not until we’re out of grad school. So she’s like “well, you’ll need some birth control pills.”  … So I laugh. I literally laugh. And tell her that won’t be a problem. We don’t have intercourse. And I look to A for back up, and he collaborates that we’ve had sex once in the past year. And Dr. E-H goes “well it only takes once.”

Yes, I know. I have a Master’s of Reproductive Physiology. I literally MADE BABIES during my master’s (cow embryos anyway). AND, OH YEAH. THERE ARE THESE THINGS CALLED CONDOMS. I don’t need to be on pills to have safe sex.

I mean, talk about pushing hormones. Damn.

I left so mad. When I seem my PCP again I will tell her I will NEVER go back to Dr. E-H. And if she is really concerned about why my bone density 80% of age matched peers, then she’ll need to send me to see someone else – maybe a regular endocrinologist would be a better approach.

Oh, and I looked up Dr. E-H’s publications. She has 8 publications total, and only 1 of those is related to endometriosis. The entire publication is 1 page long, and the study is incredibly poorly designed. Like the kind of publication I’d tear into during a journal club meeting, and throw out completely if doing a literature review. … And she says she researches endometriosis. Apparently not well …

Endo Mythbusters – Q&A with Dr. Cook and Libby Hopton

I haven’t done much for endo awareness this month, but I want to make sure I shared this video with all of you. It is very informative, and a great opportunity to hear from Dr. Cook- and endo surgeon and specialist at Vital Health Institute, and Libby Hopton- who runs EndoMetropolis on Facebook and conducts endo treatment research with Vital Health Institute.

I also want to share a blog post written by Libby Hopton in 2013: What I Wish Everyone Knew About Endometriosis.
I have a couple of blog posts I really want to write, one about my current pain, depression, and overall health; and one about intrusive. and frankly frightening, thoughts I’ve experienced when changing my dose of amitriptyline. Hopefully in the next few weeks I’ll have time to work on those and share them with you all- but school is ALWAYS busy and stressful, so I’m making no promises.
Keep fighting to feel better and content with who you are my chronic pain friends.

Doctor Rant

Visited Dr. B today, after a very stressful morning (my poor doggy woke us up early with bloody diarrhea, so we’re off to the vet this afternoon). I always leave her office upset. She increased my amitriptyline prescription to double the dose, since it had stopped being effective at controlling my ocular migraines. It also had stopped helping me sleep and wasn’t doing a good job of controlling my aching muscles and joints. I tried to talk to her about my aching muscular-skeletal system, but she brushed it off- asking me “do you spend a lot of time sitting, reading?” which of course I do- I’m a graduate student and she knows it, I spend a lot of time reading or working at my computer. But I always have, and I don’t think this pain is a result of that. Then she said, “well have a good day” and left. I know I can be a frustrating patient, but its frustrating for me too, especially when I’m (well, my insurance anyway) paying you to give me your attention and help determine ways to actually make me feel better and have a decent quality of life! And, I was so worried about my dog that I completely forgot to ask her what inflammation test she ran last time she did my blood work. Endometriosis is an inflammatory disease and I want to know if the test is sensitive enough to pick up the inflammation as a result of it. I don’t think it is, but I want to make a well-informed decision about remaining on the letrazole once I have to switch insurance companies in March. The new insurance won’t cover it, and I need to determine if it’s worth paying for it out of pocket. I’m just so frustrated about doctors who blow you off or ignore you, that I’m not sure I can even muster up the strength to call her office to talk to her about it.

I wish my doctors were as good as the veterinarians I take my pets to. I work with them a lot (one of my kitties Icarus just had major knee surgery and was doing continuous acupuncture before that) and they never second guess what I tell them. If I want to test for something, they’ll tell me the cost, and if I agree they’ll do it- not tell me its too expensive so we should just wait and see. They are always kind and compassionate with my animals, and have gone out of their way to make their veterinary experience less traumatic and more enjoyable. They remember me, even when I’m in with a different pet (which is impressive, as I take my pets to a veterinary teaching hospital- part of the local veterinary school, so we’re always seeing different veterinary students, etc.), and always ask how the others are doing. They’ll even call around to the local pharmacies and check with their own to find the cheapest place to get a prescription filled. And, best of all, they don’t brush me off or make me feel bad when I come in with some concern over my pets- even if it turns out not to be anything serious. Yeah. I really wish my doctors were as good as my veterinarians.

So easy to forget.

It’s so easy to forget just how much pain you were in. You’d think when you were in severe pain, or pain every moment of your life, it’d be something you’d recall easily, but it’s not. Once you get a taste of what it’s like to be pain free, or really, just in less pain) you quickly forget how hard it was.

I noticed this before I was in constant pain- when I’d have two weeks of horrendous period related pains and then be pain free for two weeks. It was like every time my period came around, I was floored- not just from the pain but that I’d just done this two weeks before. Like my body was tricking me, to make it not seem so bad, until it was here again.

After my surgery most of my constant abdominal pain was gone, or greatly diminished. I started noticing my joints, all over my body, really hurt- especially when it turned cold, and my ocular migraines were picking up in frequency again. Dr. B prescribed me amitriptyline; 25mg before bed each night. And that really helped. I’ve had two ocular migraines since I started the amitriptyline two months ago (two months ago tonight, actually!), and much of my joint pain and body aches were reduced.

That is, until recently.

The sharp stabbing pain in my lower right quadrant has returned. I think it might be ureter pain, since its the same pain as before surgery and clearly wasn’t resolved with the excision done in that area (right uterosacral ligament; although my hip had been feeling better!). And the fatigue has been creeping back into my life. This past week, my uterus has been crampy and angry. It’s an awful beast. Even on letrazole and progestin I spot every day, and for the past few days have been spotting pretty heavily with pain shooting down my right leg and cramping. I’m blaming the full moon.

I forgot just how bad I could feel. I crawled into bed the other day, curled tightly into a ball, and though “and this is only part of what I was dealing with a few months ago. HOW DID I DO IT?”

It’s so easy to forget how much pain we’ve be in. Sadly, it’s just as easy to forget how we were able to deal with that pain.

In closing, although my new year has started off painfully, I hope it has been relatively pain free for you.