endometriosis advice please

posted 2 years ago in Wellness
Post # 2
Member
1084 posts
Bumble bee
  • Wedding: July 2011

Sorry you are in so much pain. While I personally don’t have any advice, I’ve noticed through friends that there seems to be a fairly large group of endo ladies on Instagram and maybe some of them have advice to share : )  

Post # 3
Member
1850 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

I have severe Endo. I’m sorry you have to deal with it too. It sucks. I find that the biggest things that help me when I’m hurting are a heating pad over my lower abdomen and ibuprofren. Nothing makes the pain go away, but these are the most help to me. Also, I found that taking a baby asprin (approximately 80 mg) daily helped reduce the pain significantly overall, and especially during my period. Obviously check with your doctor before doing so though, especially since you’re already taking strong pain meds.

Post # 4
Member
17 posts
Newbee

Hi I had Severe pain with Endo from age 12 until 47. I never became pregnant. I finally had a total hysterectomy at age 47. I am feeling so much better and I am not down for those 9 horrible days a month I used to be down for. I would suggest adopting or serrogating to have a baby and have a complete hysterectomy. No other treatments ever took my pain away. I also had 3 laser pelvoscopies laparoscopies they only helped a few months before I was in severe pain again. I wish I could do my young life over again and just had removed all those female organs. It reaaly took a toll off my young years being sick so much in bed.Good Luck and may GOD help you make the right decisions for your life.

Post # 6
Member
1850 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

wanttobee:  Oh heck yes, I waited almost a decade. I was diagnised wilth the ones you noted above, plus others before I finally got a correct diagnosis. Ikept telling my doctor that that I didn’t have the things he said since nithibng he told me to do helped. He blew me off for years. I only got a correct diagnosis when my pain became so bad that I could barely walk. Then my doctor finally sent me to a specialist who immediately suspected Endo and I had a lap where it was confirmed mild Endo.

I’ve had another lap since then, and my Endo has gotten severe since I went off birth control to TTC, so I’m having another lap in a a little over a month- there was so much Endo my surgeon couldn’t get it all during my most lap. I’ve been on Zoladex for the past 5 months to slow the growth of my Endo so that I could heal until my next lap. I found the laps help too, but only in the short term so far. My pain comes back. I’m having these most recent laps mostly because we’ve had no luck TTC, but I would have had them eventually due to the pain. My surgeon thinks that it he gets it all of the Endo out he will reduce/eliminate my pain, so we’ll see. I had ablation (burning off the Endo) during my first lap which my current surgeon says isn’t as good as excision (cutting it off), apparently it didn’t do much for me:) Hopefully this during third lap my surgeon will be able to remove all the Endo and I’ll be pain free (or at least much reduced) and be successful TTC. *fingers crossed*

Post # 7
Member
587 posts
Busy bee
  • Wedding: September 2015

wanttobee:  I’ve yet to be officially diagnosed but both my grandmother and mother suffer from severe endo and I have all the classic signs and symptoms. I currently have a prescription for Naproxen which helps if I take it right when the pain starts before it gets too severe. I think any other prescription pain killer should help, I also try and rest as much as I can when the pain hits and use a hot water bottle to soothe the cramping — my mother also had a hysterectomy when she was in her late 30s and had the same experience as a PP, she is completely pain free now! 

Aqualov: My mom was diagnosed with endo after having me when she almost miscarried and was told she would likely never have anymore kids as it had affected her fertility, they actually told her it was a miracle she was able to get pregnant in the first place. BUT she ended up having three more successful pregnancies and healthy babies, despite her endo 🙂 So I’m sure you have every reason to be hopeful that you’ll be successful TTC 🙂 Good Luck! 

 

Post # 8
Member
1518 posts
Bumble bee

alisonwonderland:  My friend was in so much pain and fought and fought with the doctors to get a hysterectomy. She finally convinced the dotors to give her one when she was in her 30s when she told them she did not want to have children and didn’t care about them. She has felt much better ever since and she told me she isn’t in pain.

Post # 10
Member
1850 posts
Buzzing bee
  • Wedding: August 2013 - backyard in the woods

FutureMrs.Cammack:  Thanks, I hope so:)

wanttobee:  Yah, most general doctors don’t in my experience. Pain like this is not normal people! I see an Endo specialist now, whom I love. He’s the one doing my surgeies. There seems to be some correlation with Endo and a few other diseases, IBS being one of them FYI. I have fibromyagia and migraines too, which are also associated with Endo. Yay us! You’re welcome and definitely not loonie:) Thanks for the well wishes.

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