(Closed) Anyone suffering with endometriosis right now?

posted 5 years ago in Wellness
Post # 3
Member
855 posts
Busy bee

I don’t, but a friend does and I can see how painful it is for her. I do not evny anyone going through that ๐Ÿ™ *hugs*

Post # 5
Member
6349 posts
Bee Keeper
  • Wedding: August 2014

I have endo. I’ve had two ops in the last 5 years. Luckily I’ve been fairly pair-free since the second, because I’m on the mini-pill so don’t get periods, which has kept it at bay I think. But sex is still painful, which sucks. And in between my first and second ops I developed adhesions, and my ovaries were stuck to my utrerus, so I was in constant pain for about 8 months, which really got me down.

So I totally get how you feel; every time I get a twinge I just feel so bummed, and so panicky in case it means it’s coming back and I need another op (I’m 26, I really don’t want to have to have another op any time soon).

Are you on any treatment for it?

Post # 7
Member
1406 posts
Bumble bee
  • Wedding: November 2011

@traveller:  I was just diagnosed w/endo a month ago after my lap…my first one ever.  I’m 36 and always was told that my painful periods were normal.  I’ve been TTC for the better part of 9 years and our RE told me I had to have a lap done before IVF.  Not sure what stage it was but I had endo all over my uterus, ovaries, and bowels. The doc mentioned I should have had this surgery 10 years ago and I’ll probably lose my right ovary in the future b/c of the choc. cysts on it.  

Just had my first AF after the surgery and it was painful and I bled A LOT.  I’m curious as to how my cycles are going to be from now on.  My doc also mentioned I’ll be most fertile in the next 6 months….but I’m not holding my breath.  

 

Post # 8
Member
340 posts
Helper bee
  • Wedding: July 2013

@traveller:  Ive been suffering since my teens so now 17 years. Thank god for BCP, i take them everyday of the year for several years now and that helps. I still get a period once or twice a year but the pain is much better. I also have adenomyosis which apprently is common for endometriosis suffers. Two more years and we will try to TTC and then im taking everything out. The worst part is the painful sex. Sometimes my FH forgets and ask why im telling him to finish fast, because the pain is sometimes unbearable ๐Ÿ™ 

Post # 10
Member
69 posts
Worker bee

I’ve had endo since I was a teenager & had 3 laparoscopies and D&C’s but it would keep coming back.  I was extremely blessed to be able to have children (using fertility drugs) with my ex-H.  Then I got a Mirena IUD and stopped having periods altogether, which was wonderful as I had no pain.  Fast forward ~ I’m now remarried.  After Darling Husband and I got married I had the IUD removed so we could try to conceive ~ that was almost 2 years ago.  Aside from not being able to get pregnant (except one time, which ended in miscarriage) my endo came back severely.  The pain was excruciating and I would be bedridden the first few days of my period plus around the time of ovulation. My fertility dr referred me to an endo specialist, which changed my life.  This dr put me on Celebrex, which is an NSAID (the commercials for it are for arthritis but it is also listed as a treatment for endo).  I start taking Celebrex 2 days before I expect my period and take it until it is over.  It is a MIRACLE drug for me ~ I would say 99% of my pain is gone.  I used to avoid eating while on my period b/c the endo also aggravated my IBS and I would have excruciating pain when going to the bathroom.  Now I can eat and not suffer & the cramps are so mild I am able to work and live my life.  Before Celebrex my prev gyno had prescribed Ponstel for me, which is an older medication, and it only helped a little bit.  I also tried Hydrocodone and Tylenol with Codeine.  None of these have helped as Celebrex has ~ and the only side effect I have while taking it is it makes me a little tired, but still fully functional.  If you are opposed to medication, the natural home remedies that do help somewhat are using a heating pad (on high) and rolling it up so it is between your legs & on both your abdomen and your behind, if that makes sense (it helps having the heat both places if you have endo on your bowel).  A warmed up rice sock on your abdomen can also help (you fill up a sock w/ rice and warm it in the microwave ~ the heat & weight can be comforting).  I’ve also used the Thermacare stick on heating patches if I’m not at home.  I’m sure you already know a lot of these things but just wanted to throw it out there for anyone else who might be reading & is new to this illness.  I’m so sorry you have this ~ I know how awful it can be and how much it can affect your life.  HUGE hugs!!  Hang in there, you’re not alone!

Post # 11
Member
870 posts
Busy bee
  • Wedding: June 2013

I also have endo.  I’ve had exceptionally painful, heavy, and long periods from the time I had my first period at 11, but I didn’t start having the really bad, dragging pains till November of 2011.  I had surgery in March of last year, but I only got relief for about a month before the pain got bad again, and even with no periods, it’s still pretty painful.  Thankfully, I switched birth control recently and am experiencing some improvement, but I may request upping my dosage if possible because I’m still experiencing some pain.  My GYN was kinda pushing for a second surgery, but I think I’ll wait on that for now.

@cutiepatootie:  Thanks for mentioning Celebrex.  I’m going back to my GYN soon, so I may ask about it.  Ibuprofen works a little for me, so maybe Celebrex will help more!

Post # 13
Member
340 posts
Helper bee
  • Wedding: July 2013

@traveller:  Adenomyosis is a condition in which the uterine lining becomes implanted outside the uteru. It interferes with fertility. The worst is between this and the endo, sex is so painful at times

Post # 14
Member
998 posts
Busy bee
  • Wedding: November 1999

@barbie86:  I have it too. My surgery helped with painful sex at first….but now it hurts again. 

What bothers me is that my doctor pretty much says the pill and pregnancy are the only things that help keepit at bay, but Im tired of the stinking pill!!!!

Post # 15
Member
870 posts
Busy bee
  • Wedding: June 2013

@traveller:  @cutiepatootie:  I got my Celebrex prescription today!  I took one as soon as I got home around noon, and I haven’t hurt today from the endo, but it’s off-and-on, so idk if it’s just a good day or the Celebrex yet.  BUT it’s working for my fibromyalgia!!  And NOTHING has worked for my fibro.  So if this keeps up, it could be life-changing.  So glad I read this thread.  A huge thank-you to both of you.  ๐Ÿ˜€

Post # 16
Member
96 posts
Worker bee
  • Wedding: December 2013

My Dr. told me a couple months ago that I have endometriosis, however until I have my laporascopy, there will not be a dfinitive diagnosis. I am suffering right now…ugh. actually mildly as I type. My pains are absolutely debilitating. I am NOT a person that will call in sick for work, but I have done so many times, because I can not even get out of bed to do minor things, or even change rooms. The only real relief I get when the pain does is come is living with a heading pad attached to me, or standing in the shower or the bath and having hot hot water on me. I am a nurse, so calling in sick really sucks, but because I have access to some things at work, sometimes I can go when the pain is bad. IE. A patient trasnfer belt. I will strap that around me and attach my heating pad that way Only on a night shift thought when I dont have too much to do. Mine only started when I got off the pill a couple years ago..maybe 3? We were going to start TTC, but absolutely no luck yet, unfortunately. I have very heavy periods, but I dont really feel pain during sex, mostly only during jerky movements, or really any movements for that matter for 1 week before my period and then a few days during. I cry, I vomit, and it sucks. No analgesic, or anything works for my other than heat. I definitely feel everyones pain!

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