Tuesday, August 30, 2016

Outlier

I am an outlier.  The average age for onset of perimenopausal symptoms is 45 (citation).  I'm a full decade ahead of schedule.

I could make a joke that this is the first time I've ever been early for anything in my life.  I've been known to handle difficult things with sarcasm and mildly inappropriate humor, but right now I don't feel like joking. 

For the most part I've accepted that my cycles are probably going to lack predictability for whatever remaining time that I have one.  I've learned what my triggers for hot flashes are and strategies that are mostly effective for dealing with them.  I understand that I'm probably not going to be able to wear heavy sweaters anytime in the near future and that I probably won't need to wear a winter coat again this coming winter.  With as much as I hate it and miss it, I know that cuddling with my husband isn't going to be as frequent, because the added body heat always triggers a hot flash, and cuddling with a hot, sweaty mess isn't any fun for anybody.

I'm convinced that the progesterone in the IUD has helped with some of the symptoms.  While I'm not one of the lucky majority who stops having a period after they get an IUD, my periods are much more manageable and I haven't had a scary one in the almost 18 months that I've had it.  I think that it's also helped with itchiness and skin dryness.  For these reasons, it's worth keeping, even though there's not a whole lot else that I like about it.

I've always had PMS related mood swings, and these have intensified with perimenopause.  For the most part I can keep these in check.  But sometimes not so much. 

I'm struggling with the fact that many in my peer group are still popping out babies, seemingly with ease, and I'm over here just hoping that I start my period soon.  It feels like some kind of cruel joke.

I'm also having a hard time with what this all means for bedroom activities.  The truth is that I don't really feel like having sex most of the time, and even when I do, my body is uncooperative.  It makes me feel incredibly broken and unlovable.  (I feel like I should mention here that hubs has been a saint and even though he's just as frustrated as I am, he's also been incredibly understanding.)

Based on the reading I've been doing, it seems that none of this is atypical for perimenopause.

I can't help but feel like I am too young for this though.  And I can't help but feeling like no one (meaning medical professionals) takes me seriously when I talk about this stuff.

Right now I'm in the midst of a particularly brutal (and long) cycle.  My mood swings are out of control.  I don't want to be around me right now, and others shouldn't have to endure me either.  Really, until I start my period, the most suitable place for me is probably an isolated cabin in the woods where I am not required to interact with my fellow humans.  I literally feel like I'm teetering on the edge of going crazy.  I don't even know how I'm managing to function in daily life.  I don't like feeling like this.  Everything is magnified and I don't really like myself right now.

And this isn't even mentioning all of the other stuff that I feel is likely related to endometriosis.  Of course, this is a self-diagnosis, because even after 20+ years of trying to get doctors to listen to me, including a full infertility workup, I've been fobbed of and it's never been investigated beyond a pelvic ultrasound, which we all know is not the proper diagnostic tool for this condition.  Eventually I gave up trying to talk to doctors about it.

I'm going to the gynecologist on Thursday for my (overdue) annual checkup.  This doctor and practice are new to me.  It's a gynecology only practice, so hopefully some of the triggers from the old practice (e.g., waiting rooms full of pregnant people) won't be present.  I'm anxious.  I'm wishing that the appointment fell during a more normal cycle where I felt more like myself (a logical, rational human being, for the most part) and not like the Wicked Witch of the West (who may commit homicide or start crying for no apparent reason).  I hope that I like the doctor.  I hope that she's compassionate and empathetic (or at least pretends well).  And most of all I hope she listens and takes me seriously.  While I'll consider the appointment a success if I manage to not loose my shit while I'm there, I'm really hoping to hold it together for long enough to talk about getting a laparoscopy to formally diagnose and remove endometriosis and weigh the pros and cons of hormone replacement therapy. 

I needed to get this off of my chest.  I'm having a hard time dealing with it right now. 

24 comments:

  1. dear BnB, I am keeping my fingers crossed that your new gynecologist takes you seriously and will be able to help you.
    I know what you mean by brutal and long cycle. I haven't had my period for almost 3 months. I know I am a bit older then you, but still, I am only 43. I am too young to enter menopause.
    hugs from Europe.

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    1. You are too young too! It is just plain hard.

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  2. Oh lady. This is just plain awful. I'm so, so sorry you're having to endure this. No one should.

    I'm very angry to read that your doctors have not done their job. Shame on them. Truly. They can do better and it truly is a shame the profession is not.

    My hope is this new practice does do some investigation and actually listens to you. Because you've suffered long enough and need someone who will actually take you seriously. Let me know if I can help arm you in any way for this appointment. It's not in your head and they would be helping you.

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    1. I'm cautiously hopeful. After a few rough years I finally feel like I'm regaining my voice and am in a better place to be an advocate for myself. Now I just need the confidence to do so.

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  3. You should make a list of all things you want this new doctor to know about and what you expect and when you go in just give them the list. I have an autoimmune condition that was undiagnosed for 10 years and through multiple doctors, eventually having one who knew my symptoms were real, and treated me but without actual answers. Having a list forces them to acknowledge everything you went there for before they can interrupt and get you upset.

    As I am also experiencing some crazy stuff this month, I sympathize big time, I hope you get what you want out of this. I also like the idea of finding a dr that is just doing gynecology and not dealing with babies, how did you go about finding one? I haven't looked for one since the move even though I did want to switch before the move and actually I am presently feeling a little panic over what my body is doing, and why I keep yelling etc.

    apologies if the grammar here is really far out I've been up a very long time.

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    1. Ugh! I'm sorry that you're going through this too! It took a while to find a gynecology only practice, and the one that I did find actually isn't a preferred provider for my insurance so I'll have to pay more out of pocket to see her...not so much an issue for regular appointments, but it could present issues if surgery is required.

      A list is a very good idea. I'll compile it tonight since I need to sit down and fill out the new patient paperwork anyway.

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  4. I'm an outlier too, but on the other end of the spectrum... 55 & STILL not completely done with Aunt Flo -- although her visits are becoming more irregular, and the menopausal symptoms are increasing. :p No matter what age we're at, I guess it just plain sucks. :p Fingers crossed that your new drs can offer you some relief!

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    1. I actually thought of you when I called myself an outlier. :)

      I have everything crossed that good ol' AF exits without much fanfare for you!

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  5. Ugh. This sucks. Endometriosis is so frustrating because I know of so many who wait years to get an official diagnosis. I'm so sorry you aren't being taken seriously. I would think this is something your doctors would want to look into...

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    1. I would think so too! Maybe I just haven't been demanding enough? I also think that most GPs don't know much about endo and most gynecologists have the misconception that it can be treated with birth control.

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  6. This is awful. I know my moods were completely out of control before I started HRT, and how horrible it is to be aware that you're out of control, but not to be able to do anything about it.

    Here's a suggestion for the appointment with the new doctor. Write (or type) out your questions for them, take a copy for them and and a copy for yourself, and tell them you'd like to go through these issues and discuss them. That way, you don't have the pressure of remembering them, or having to articulate them if you're not feeling up to it.

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    1. It's such a terrible feeling, to recognize that I am out of control but not being able to do anything to stop myself from overreacting. I've literally spent most of the last two weeks feeling like I'm teetering on the edge of completely losing it.

      Thank you for the suggestion to create a list of questions. I'll definitely do this, along with a list of symptoms.

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  7. I'm so sorry that you're so young for this to be happening, and you've been so fobbed off in the other areas, and it all just sounds so depressingly familiar. I was convinced from about 37 that I was peri-menopausal but no doctor ever took me seriously because my bloodwork was always in range (apparently it can look normal). Hideous mood swings involving suicidal feelings for two weeks of the month, palpitations that made my body rock, crying fits, homicidal tendencies, no sex drive etc (a huge difference compared to whatever PMT I had previously had) and my female doctor would just say 'Yeah you seem too young..." - despite fact that I'd had zero ovarian reserve at 36, stage 4 endo diagnosed and I'd failed ivf before transfer (surely that all MIGHT predispose someone to an earlier menopause?) I went back to her at 43 and she REPEATED this to me, that I was "rather young", and just gave me five days' worth of anti-depressants (!). She was out of her depth and also not interested, really. I don't know why there is this brick wall of ignorance, in this area, amongst doctors but it is absolutely infuriating. I hope you get your laparoscopy and endometriosis diagnosis as it might make things clearer - I'm sure with me everything is interconnected. Sorry that you're down; know that you're not alone!

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    1. I've got the "you seem to young for this" line too! It infuriates me. It makes me feel a little better to hear that others have had pretty severe emotional symptoms too. Thankfully I haven't been truly homicidal or suicidal, but I suppose there's still time for that. My ovarian reserve was virtually undetectable at 32 (along with crazy high baseline FSH and Estrogen), so I sort of knew that early menopause was on the horizon, I guess that I was naive and didn't expect it quite so soon (symptoms started a couple of months after my 33rd birthday). I'm just really having trouble coping right now, and the worst part is that I know that it will get better as soon as I start my period.

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  8. I second Klara's hope for a better run with the new gyno. I talked to mine about HRT following fertility endeavors (since I will for sure go into early menopause) and he seemed to think that the benefits outweighed the reduced cancer risks with the new medications. If you get another doc who dismisses you, you may need to put your advocate hat on and get loud.

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    1. Thanks! I'm curious to see how the HRT discussion goes. My suspicion is that birth control will be the solution offered. I'm glad to hear you say that your doc thought that the benefits outweighed the risks because that was my main worry. I don't want cancer in 20 years, but I definitely need to be able to function in daily life now.

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  9. I"m so sorry that this has been such an awful cycle, and that you're going through this so young in the first place. It sounds just horrific, and I am so glad that you have an understanding, wonderful husband to support you as you morph from yourself to the Wicked Witch. I'm sorry your doctors suck at figuring out ways to help you. I loved Mali's suggestion about writing up your questions so you have them with you and don't have to try to remember all of them. How lovely to have a gynecology-only office! I hope they find an answer to the endo and HRT and everything that can get to to a better place, physically and emotionally. This just sucks. Thinking of you as you go to battle with the doctors to get the care you need and deserve!

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    1. Thank you! I really appreciate the support!

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  10. I really hope your new doctor will be understanding and helpful. There's nothing worse than when doctors don't take you seriously or just fob you off. I hope there will be some way to manage your symptoms.

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    1. Agreed. It is so frustrating. I hate feeling like I have to fight for myself.

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    2. Unfortunately, we always have to fight for ourselves when it comes to our health in the settings on American healthcare :( I so can relate how you feel. I remember when I came to my PCP and told her that I have so little energy that I can hardly peel myself out of bed in the morning. Her response was I was depressed and I had to sign up for a book club or something, or change my job. Oh, and I had to hook up with my ethnic community. So arrogant. I was so stunned that I had nothing to say. Well, maybe I speak with an accent but I know how to pick up a phone book and schedule an appointment with my new PCP. The new doctor is AWESOME, I can talk about anything with her, she takes me seriously and I hope she never ever moves out of the area :) I really hope your new doc will be wonderful and work with you to solve your health concerns.

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    3. I hate arrogant doctors! I'm sorry yours was a jerk to you! It's so hard to find a good doctor and then for them to stay around (and don't even get me started on insurance bullshit).

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  11. Dear BnB, I am so sorry to read this. I hope that your new gynecologist will *listen*, understand and be able to do something about it! We all have to fight for ourselves sometimes - it is annoying because this usually happens when we aren't feeling our best... but it is so worth it!

    A laparoscopy can make things clearer (it did for me), but please keep in mind that it is still surgery. I have some problems from a laparascopy carried out more than two years ago. Now, going back, I guess I would still do it despite these problems: at the time, I just wanted to know what was going on in my body so desperately. But please do think about it well before you take a decision. It is a routine surgery; dozens of women are undergoing it daily at the hospital where I had surgery, but it does take time to heal afterwards (longer than they said in my case). In addition, there is quite a bit to deal with emotionally when you get the diagnosis. But then it can also be liberating to know where you're at. Good luck - I'm keeping my fingers crossed for you, too!

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    1. I agree that any time it's surgery there's a risk of complications. I think that at this point I'm willing to take on the risk for answers and closure.

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