(Closed) Where all my ladies with Endometriosis at?

posted 4 years ago in Wellness
Post # 2
Member
393 posts
Helper bee
  • Wedding: July 2015

Yes!  I had a lap & then had my second about 5 years later.  I’ve also tried lupron depot shots which threw me into a temporary menopause (NOT fun), tried mirena to help keep it from growing back, and assorted vaginal suppositories…after 2nd surgery my MD said my uterus was boggy & filled with blood; very suspicious for adenomyosis (like endo but trapped in middle layer of the uterus; I’m an RN & hadn’t heard of it).  This past November it all taken out; uterus, cervix, Fallopian tubes (kept the ovaries, but whether that was the right decision remains to be seen).  Pathology report was positive for the adeno.

Good luck to you bee, it is an awful disease & very misunderstood!!!  Very odd too; I had severe pain with small amounts of endo; some women are filled with it & never know unless it impacts their fertility.  I hope you have a good heating pad; I think I went through 4 a year for a while there…

Post # 3
Member
393 posts
Helper bee
  • Wedding: July 2015

This:

Post # 4
Member
329 posts
Helper bee
  • Wedding: February 2014

Another endo warrior here!! I have had 5 laps in the past 6 years. I hate endo. I hate flare-ups. I hate having to explain to coworkers and acquaintances why I’m limping. Most of all I hate how endo has completely taken over my life. 

Question for you ladies: do you ever have a sharp pulling pain after you urinate? I think I may have new adhesions on my bladder because this pain has been consistent the past few weeks. I know it’s not any kind of infection because it’s only when I urinate. 

Post # 5
Member
823 posts
Busy bee
  • Wedding: August 2017 - Sea Cider

I’ll sound off. didn’t know I had it until I wound up with appendicitis my junior year of college. . .the surgeon who took my appendix out cheerfully informed me (once I was properly awake, g-d love him) that my appendix, uterus, and small intensine all looked as thought they had been napalmed (his words) due to the amount of endo scarring.

I used to get the worst cramps, migraines, periods that would last months (yes, plural, and no, not kidding). I finally got help from a new OB when I started needing to regularly pull over on the road because the cramps hurt too much to be able to drive.

my OB is a wizard. now I just have to see how long our current course of tx lasts.

Post # 6
Member
46 posts
Newbee
  • Wedding: July 2017

Me too. ๐Ÿ™  Though I haven’t had surgery for 100% official diagnosis, but my gyno, endo nurse, and GP all agree.  I mainly have digestive-bowel symptoms, and absolutely freakin’ TERRIBLE cramps on my period. Have landed in emergency several times, and a few times it was difficult to get the nurse/doctor to take me seriously, as it is “just” period pain. 

I don’t want to get surgery because I have heard that it doesn’t always help, and can sometimes make it worse in some cases (because surgery –> more adhesions –> another place for endo to develop)

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wontonsoup:  I don’t get bladder pain, but from what I have read that sounds like endo on the bladder to me.

Post # 10
Member
65 posts
Worker bee

Endo sucks ๐Ÿ™

I’ve had 2 laps to remove huge ovarian cysts. Last time the cyst was right inside the ovary and after removing it they couldn’t stop the bleeding for about 2 hours. And then, the “cherry” on top was when the surgeon announced that I have hydrosalpinx. And endo on my peritoneum. So yeah, not knowing if my tubes are functional and being in pain every day is just my normal life now I guess.

Question to all you endo warriors – are you exhausted all the time? I am doing some minor renovation and work on it app. 6-8 hours a day and every morning I wake up feeling like I’ve run a marathon. Sooo tired…

Post # 11
Member
393 posts
Helper bee
  • Wedding: July 2015

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wontonsoup:  Could definitely be endo on your bladder; that’s one of the spots where I had it, although I didn’t have pain with urination that “pulling” pain is definitely how I would describe endo pain.  Also, I have mild interstitial cystitis, which is pretty common in endo patients, and have some bladder pain from that as well.  Unfortunately that is another condition that is difficult to diagnose & treat.

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jillybaby:  I understand your reservations about surgery; I was unofficially diagnosed in my early 20’s but didn’t have surgery until I was 35.  You definitely have to decide for yourself if the benefits outweigh the risks; I did end up with some scar tissue adhesions, but having the diagnosis was worth it, and the surgery did give me some temporary relief.

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primavera:  I think fatigue and endo go hand in hand; it is exhausting to be in pain all the time!

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ohhsnap:  Thank you!  I used to sleep with my heating pad every night.  I also have fibrocystic breast disease, and with keeping my ovaries a light breeze is agony on my breasts for about 4-5 days a month.  I am convinced I was a major misogynist in a past life ๐Ÿ˜ฉ

Post # 12
Member
1245 posts
Bumble bee

Another Endo bee here… I haven’t gone the route of lap “yet” although my original OB suggested one before trying to conceive.  ER a couple of times for some morphine to get through the worst of the cramps. OB also put me on narcotic pain killers which I refuse to use. I usually spend 36 hours vomitting or in bed rather than get high. 

I have a girlfriend who see’s a nutrtionist/holistic health practitioner who got her endo under control through hormone balance. It’s somthing I’m looking to try but to see someone it’s SO expensive… anyone else tried it though?

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jillybaby:  Can I ask more about your digestive symptoms? Lately I have had some major pains and bloating, way more than usual and my cramps have been different so I’m wondering if perhaps that’s what is happening?

 

Post # 13
Member
393 posts
Helper bee
  • Wedding: July 2015

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robynrox47:  I know your question wasn’t to me, but I also had a lot of digestive issues with alternating diarrhea & constipation and bloating, which I still have even after my hysterectomy.  Unfortunately IBS & Crohn’s are also both very common in endo patients.  Fun times!

Post # 14
Member
308 posts
Helper bee
  • Wedding: May 2016

After pretty much 14 years of painful handicapping pain that would interrupt everything I’m doing, I’ve finally been diagnosed last week, at 29. I knew there was such a big chance of me having it given my symptoms (especially after my mom told me that both her and my grandma had it, info she only disclosed for some reason when I started all of the ultrasounds) but I was hoping it wasn’t that. I don’t want to go on hormones, nor do I wanna go on the pill, so now I don’t know how to fully deal with it. I have an apointment with a gynecologist about it in June, after our wedding, so hopefully I get more clarity then.

The hypochondriac that I am immediately started researching and found out that women with endometriosis have something like 90% more of a chance than women without of getting lymphoma, brain cancer, ovarian cancer, and that freaked the fuck out of me.ย 

Anyhow, yes I’m always tired and that probably has more to do with our bodies being in a state of inflammation, than the pain itself (I only feel excruciating pain on my period, but I feel moderate pain throughout my cycle, however I’m used to that now, but never got used to the period pain, because it’s unlike any other)

Post # 15
Member
329 posts
Helper bee
  • Wedding: February 2014

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primavera:  Yes! Chronic fatigue is a real thing. Sometimes I wake up exhausted. I think our bodies go through so much doing daily activities while dealing with pain and inflammation. 

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