Endometriosis? Really?

I think this is the appropriate sentiment.
I think this is the appropriate sentiment.

It has been a long time since my mother has had to remind me of who I am. I don’t know if everyone has someone like this, but my parents are realists when it comes to parenting. They believe their kids are smart, handsome, beautiful etc. just not the most of any of these qualities. Neither of them have any qualms about telling me how flawed I am if I decide to get too big for the britches as they say.  For instance, once I was very indignantly mad at my husband and Mom pointed out, “You are not such a peach either.”

I am not complaining. Knowing where I stand is something I value. I am telling you this to say that when my parents give me a compliment, I know I deserve it. So Friday, when my Mom told me that I am one of the strongest women she knows, I know she means that. It was one of those moments where I looked inside myself and found something so deeply hidden, it is probably going to take months to dig it out and that is my indignation.

I have gotten a little soft lately. I think it is because I found love and all that bliss it contains. So this pain I have been having every month, this horrible bed ridden type pain that is making me a little crazy, I thought there would be a solution for. I was looking for an answer from other humans. I trusted the medical professionals to find me an answer and just remove this pain. It seems logical. It was blissfully ignorant, the hope and faith that people have who believe in love and such. Right? I mean that is how the world works right, you go to the doctor and leave feeling better and with hope you will feel better…yeah not so much.

I have been going to the doctor with intense menstrual pain for over twenty years. I have had a gazillion different appointments where I have described excessive bleeding and intense pain. I have missed work, vacations and other fun.  I have had ultrasounds and even emergency room visits where they pumped me full of morphine. They have told me the entire time that I have PCOS and that the cysts where causing me pain. So my last appointment at a new doctor here in Philadelphia I asked why I didn’t just get my ovaries removed if they were causing me pain. She said that sounded reasonable so she set me up with an appointment with one of the best gyno/surgeons in Philadelphia.  If you are a follower of my Facebook or Twitter feed, you probably know I have been sort of excited at the prospect of no pain. I have been daydreaming about my ovaries in a jar.

The first thing this accomplished doctor told me was that PCOS doesn’t cause the pain I am experiencing so removing my ovaries would be pointless and stupid. Well she wasn’t that rude but by the look on her face I knew that is what she thought. I immediately started crying. Why the hell hadn’t anyone told me that before? Why was I blaming PCOS for all my pain this entire time? Why didn’t any of the ten doctors I have seen for this before tell me this?

She thinks it is probably endometriosis, but will have to do tests to be sure. She was very vague about treatment. Maybe we will try IUD or to put me on a medication that will put me on a fake menopause. Neither of these things sounds pleasant or like something I want to do. She also said surgery most likely won’t fix anything.

Afterwards I was in a daze. I didn’t really know how I felt other than devastated and extremely exhausted. I had a coffee date with a friend after and she was so lovely to me, and reminded me that there was still hope with this new diagnoses and I was still on a journey to getting better. She also told me that it was okay I felt sad. This was good because the minute I got back to my apartment I called my Mom and broke down.

She was mad too. She had hoped the same things I did, that it would be as simple as removing the pain. Furthermore, she wanted me to get mad too. She said, “Cry today. You deserve to cry today, but then you need to pull it together and be you. You are the strongest person I know and I want you to talk to the doctor and tell her what you want. Don’t cry at the doctors. You are a very capable women, and don’t let anyone make you feel like you are not.”

You know it wasn’t the doctor making me feel like I wasn’t capable; it was me and the pain. I let the pain make me feel feeble and timid. I am not timid. I am a bulldozer in sneakers. My family and friends know I am not subtle. My sister told me I needed to pretend that I was advocating for her, because she knows I would be searching for solutions all over.

I would love to say that conversation gave me instant back bone and now I am researching with a resolve. I am researching.  However, I am still having a bunch of feelings I don’t understand. They range from frustration with a system that took over ten years to give me an answer, sadness that I will continue to have this pain, and anger that I still don’t definitively know anything. I am creating a girth of information and choices for me, but in the meantime, I am frustrated by the lack of information. I am re-angered as I look for answers in the chat rooms. The women there have all been ignored or told their pain either is made up or doesn’t matter. There isn’t one story I have read so far of women who were believed, cared for, and helped right away; years after years plagued by a debilitating pain and no one listened. I flit between resolved to find my answer and all these other feelings, some of them all at the same time.

That is where I am at now. I am in research mode. At the very least, I am again taking my health into my own hands and searching for an answer.

10 thoughts on “Endometriosis? Really?

  1. Julie Trout

    I don’t know if you have ever noticed some of my FB posts, but I’ve been working through the same issues with Monica since she was 14. The biggest difference is that she has no evidence of cysts. They can’t explain her pain. Most of the women in my family have untreated PCOS. She’s had 3 surgeries to scrape and explore, but she is negative for PCOS and endometriosis. They have ruled out gastrointestinal issues, as well as any pelvic floor issues. Her left ovary seems to hold the most pain, but they also said if they do a hysterectomy, she will most likely still be in pain. They’ve tried two different kinds of anti-depressants, IUD and nuero blockers to try to ease the pain. The first time they tried the Depo shot to start early menopause was horrible, becuz they didn’t give her a med to counter balance it. Her last option is to do the shot again, if this current combo of meds doesn’t work. Typically she has pain 3 out of every 4 weeks, even if she’s not on a period. Right now, their best guess for her is chronic pelvic pain, which I feel is just a way of saying..they don’t know. I’ll be curious to see what you find out. My Aunt just recently told me that need to do a full hormone panel on her, as there has been great strides in that research lately. That’s what we will be suggesting next 😊

    1. I am so sorry she is in such pain! I am looking into nutrition because going organic went so well making my periods regular. Also Mirena the iud is something a lot of people on the endometriosis boards have had success with but I don’t know if I will do that because progesterone hasn’t worked well orally for me. This is where I am going so far.

  2. Mandy

    It is my experience that Drs love giving names for things. PCOS, endometriosis…I’ve also been diagnosed with those for my pain but they’re both wrong. Very wrong. I’ve also been told I had diabetes, allergies, interstitial cystitis, IBS, chlymidia (seriously), pelvic inflammatory disease, all wrong. Not to say she’s wrong about the endometriosis, I have no idea, but those Drs do like using terms. So try not to despair because she’s countering what you have thought for years. I know people with endometriosis and their pain is nowhere near as severe as what you describe. It’s more like discomfort. And how would a hysterectomy not take away the endometriosis, if that is indeed what you have? Seems strange to me. Anyway I’m sure you know by now not to take all dr advice as truth. If I were you I’d get a second or third opinion about the hysterectomy. I really hope you find some answers! Your mom is right, you’re very strong and smart and I know you will get to the bottom of this. So sorry about your lifetime of pain. I really hope that soon you can experience life pain free.

    1. Thank you. I will be getting a second opinion after my tests get back. I am sorry you have been in pain as well. Has your diet helped with the pain? I am looking into nutrition options. Thank you for the encouragement. I think I will need to be reminded of my strength a lot. It really helps.

  3. I feel for you! I have endometriosis, diagnosed and treated by laparoscopy. It’s my understanding that the only way to conclusively diagnose endo is by laparoscopy. I was extremely thankful I did my surgery. My endo was growing around my bladder and bowel in ways that would have eventually caused me serious problems. I’d highly recommend finding a doctor with specialized experience treating endo, if you haven’t already. Whatever’s going on, it sounds like you have strength, smarts, humor, and a great support system. I wish you well!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s