(Closed) Where all my ladies with Endometriosis at?

posted 4 years ago in Wellness
Post # 31
1638 posts
Bumble bee

As an older bee, I wanted to let you gals know, that at some point you may face hysterectomy.

Best thing I ever did.  SO glad I had it done. I was 30 and knew I was done having children.

No pain, no blood, no more.  My daughter followed suit, she had hers done at 28, changed our lives.

So chins up, there is light at the end of the tunnel (oh good gracious that is SUCH an unintended pun).

Post # 32
65 posts
Worker bee

There’s a group on FB called Endometropolis. It’s great! There’s also a lot of info from endo experts. 

Just wanted to point out that hysterectomy does not always help because endo is sort of independent – it produces estrogen on it’s own. Hyst. is something recommended with adenomyosis which is basically endo of uterus tissue. There are plenty of women with regular endo that have gone through hyst. and still battle endo. 

Post # 33
550 posts
Busy bee
  • Wedding: August 2016 - Theater

I don’t have a 100% diagnosis, but my gynos and physicians generally agree that with my family history (mother’s side is riddled with endo) and my symptoms, it’s probably sitting there tight. I use hormonal birth control to suppress my periods for 3 months at a time to keep the lining from growing everywhere. It’s coo’ with me, I don’t mind only having 4 periods a year.

I mostly try to ignore it to be honest. The suckiest part is when I get die-whore-die cramps after orgasms haphazardly in no predeterminable pattern.

Post # 34
1800 posts
Buzzing bee
  • Wedding: October 2015

I have 6 monthly laps. Endo sucks!!!

Post # 36
1915 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

ohhsnap:  Good luck on your lap!

Another endo gal here. Thought it was mild endo according to my surgeon who first diagnosed it via lap. (After 10 years of being brushed aside I might note- I had to have so much pain I couldn’t walk before my primary took me seriously enough.) I think my first surgeon was an idiot. I went off BCP’s to TTC a few months after my lap, after a year of no luck and more pain each month I found an Endo specialist- turns out in a year it went from ‘mild and removed excpet for a little but way doen there that wasn’t safely accessible but won’t b e an issue for you (i.e. I’m a crappy surgeon and don’t have the skill to remove it all but I won’t tell you this and instead will let you think it’s all good)’ to ‘so severe it can’t be removed in one surgery you’ll need 6 months of Zoladex/fake menopuase and a second surgery to get it all’. I was fully encased from kidney to rectum and everywhere in between.

Another thing for you endo ladies that I didn’t know and wish I had sooner: Endo itself and ovarian surgeries can lead to Diminished Ovarian Reserve. At 33 I had the amount of eggs of a 45 year old about to go into menopause. I’m now doing IVF and it’s not going well. My crappy ovaries don’t like to respond to the meds and there’s little to work with. Just an FYI if any of you all are planning to have kids one day- have your AMH (anti Mullerian hormone) tested. It’s the easiest and most reliable way to know if you have time to wait or not. A result below 1 means your running out of time. Mine was 0.3!

Post # 37
618 posts
Busy bee

We are 99.9% sure I have endometriosis.  I have always had terrible cramps, sometimes getting to the point of passing out and almost throwing up.  It keeps me from work some months.  My mom had a laproscopy done last summer (first one, at the age of 45) and was finallly diagnosed – but she definitely had it her whole life.  Her symptoms and mine are extremely similar.  It’s the absolute worst.  I’ve been experiencing more bloating while on my period in the last 6 months too, which is really annoying.

I went to my gyno about it a few months ago and got an ultrasound just to rule out structural issues, and nothing showed up.  So at this point I just have to decide whether to get the surgery or not… I’m hoping to avoid it for just a bit longer, as Darling Husband and I want to start TTC within the next few months.  My mom said for her, after she had us kids her pain would be better for a few years.  I jokingly asked how many kids you have to have to never need surgery – her answer was 13, which is the number of kids my grandma had (pretty sure she had endo too, as she said she felt better pregnant!!).  The gynologist confirmed that this is common (to have less/no endo symptoms while pregnant), because of the change in hormones while pregnant.

Of course if we have trouble conceiving, I’ll have to have surgery sooner as I know endo can cause infertility.  Though my mom and grandma had no trouble getting pregnant, so I’m hoping that won’t be a problem for us!  Then once it starts acting up again after I have a baby, I’ll think about getting the surgery then. (Or just have another baby… we want at least 4 kids!  So maybe I can just never have surgery, haha – though I’m only 24 now so I doubt I’ll be able to avoid it forever).

Has anyone else experienced this – improving/less endo symptoms after pregnancy? Thanks!

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