Tuesday, July 30, 2013

Let's Talk About Me (and my Endometriosis)

I owe you a birthday party post, which I am working on, but it wont be ready until tomorrow... or Thursday...or sometime next year.  So for today I am going to dive into a long neglected subject around here... my endo.


It HAS been neglected!  I mean, sure I talked about it non-stop for five years, but I haven't mentioned it in...(searches blog) wow, NINE MONTHS.  And apparently that post was alarmingly similar to this one I am writing RIGHT THIS SECOND.  So... here we go.

People have actually been asking how my endo is lately, and they seem very alarmed when I declare "Oh... it's sorta awful".   And then they are like "Well, I assumed it was fine since you never mention it."  Which is totally a fair assumption.  We all KNOW how vocal I usually am when something is bothering me...  but I guess this is different.  Before my endometriosis was getting in the way of getting pregnant. It was a constant battle to keep it at bay while trying for a family.  Every ache and pain felt important to the end goal of a baby.  Every way to fight it impacted our attempts to grow our family.  But that's not the case anymore. 

Now, the aches and pains really mean nothing beyond aches and pains.  I could mention them, but I guess I don't see a point in talking about something that is bothering me when there is really nothing to say or do to change it.  The only real decision left is when to have a hysterectomy.  Which... I am not sure when that will be.  Two weeks ago I was in so much pain from the endo that I threw up.  Two nights ago I seriously considered having Nick take me to the ER because I became afraid the pain was actually so bad it was my appendix bursting and I just THOUGHT it was my endo (spoiler alert, it was my endo). 

But on the other hand, a lot of times it's fine.  The IUD is doing it's job, which is dramatically shortening my cycle.  I really don't have periods anymore (Score!) and although I have a few random times a month I am M-I-S-E-R-A-B-L-E they usually last no longer than a day or two, sometimes just an hour or two.  They are spread out, and totally random and unpredictable, which is annoying, but a the same time, I don't dread a full week to ten days of my life each month.  It hits, it sucks, it's better. 

I have no issues with a hysterectomy when it comes to more babies.  I have accepted that is not happening, and truly am loving our family of three.  I feel blessed.  But I do have issues with having a hysterectomy at 33 for other reasons. I am young (in hysterectomy discussions at least) and since I believe they would need to take my lone remaining ovary, I would have to go on hormones.  That means I would be on hormones for like, FIFTY YEARS (let me believe I will at least live into my 80s). I know enough about women's health to know that is not a great thing. I could attempt to leave my on ovary, but we are still talking a major surgery.    I am working on my masters and have limited time off work, so it is REALLY not a good time to be recovering from something like that.  Plus... I don't want to.  I don't feel the struggles out way the negatives yet.  I don't know how long the scale will tip that way, but for today, it isn't worth it.

So that's where we are, and I guess that's why I don't mention it often (or at all) anymore.  That's why I am not calling the doctor to discuss my endo, having ultrasounds and shedding tears with a nurse over how much this sucks... I know it sucks.  I have my pain medication, which helps when I need it.  I know the techniques to fight it, and until I am ready to take the next step, I feel complaining is just sorta pointless. 

 Enodometriosis sucks.  I hate that I have it.  But I try to not let it take any more from me than it already does, even here on the blog. 



  1. Hey there, my sweet niece: on the subject of hormones - I had a hysterectomy 19 years ago. They took everything including both ovaries. Since my grandmother died of ovarian cancer I didn't want them hanging around. I took hormones for 3 or 4 years but then made the decision that I didn't want to take them anymore because of the breast cancer risks, etc. etc. So I stopped. I take no hormones and have not for many years. Sure, I had hot flashes and night sweats for a good while, but my body adapted and I'm fine. No hormones, no problems. You DO NOT have to take hormones for 50 years. Food for thought.

  2. I hear you! Same thing here... I am only 29 but we know we can't have any more kids so the question is what age is the right age? My mum had hers at 36 and thinks I'm mad to put it off... But I've been through two pseudomenopauses in my 20s so don't want to risk an early menopausr knowing how much that sucks! But how long do we put up with the intense Endo stuff because, let"s be fair, it totally drains us right!! I'm putting off another lap while Oscar is so young so I know a hysterectomy is a way off yet, but it is hanging there you know?

    It sounds like your pain is bad :( mine is manageable at present but regular throughout month (caused by silly things like cleaning the kitchn floor!) and nausea is my constant enemy... But your pain sounds intense like I haven't had in a few years. I feel for you so much! Why must we have to make these massive decisions? And hpw telling is it that this is such our norm thay we never mention it?

    Thinking of you loads and always here if you want someone to bounce thoughts off xx

  3. I'm getting ready to write a similar post about my endo b/c I have a WTF appointment w/ my gyn on Friday to discuss next steps. I was irresponsible and wasn't on BCPs for the last 5 years, and my endo is back with a vengeance. I'm back on BCPs now, and each month is slowly getting better, but I'm over it. The back pain. The side pain. The pain radiating down my leg. I know it's my right ovary and useless right tube that is causing me the most pain, so I'm hoping I can convince the doc to remove them or come up with some better way to treat it.

  4. Yup, horrid invisible diseases. Everyone thinks that if you don't mention anything, you are perfectly healthy.

    I'm in a similar situation. After 5 operations, bad endometriosis (now through the bowel wall), severe adenomyosis, PCO ovaries. I don't have kids, but luckily don't want. It's all only partially controlled by the combination of IUD + Visanne, with the occasional 3-6 month courses of Lupron/Zoladex.

    But... the gynecological surgeons here (Germany) refuse take the ovaries until I'm at least 45. Another 10 years. Seeing as a plain hysterectomy probably won't fix the problem, and they have threatened a bowel resection and bag if I decide to have a hyster, plus they have a limit of 10 years of HRT, I'm leaving it as late as possible.

    Those days where the spikes come through can feel so long and unbearable though!