Ladies with Endometriosis: What does it feel like?

posted 6 years ago in Wellness
Post # 3
Member
121 posts
Blushing bee
  • Wedding: August 2012

Endometriosis can feel very different for different women. In my particular case it causes a lot of pain, general cramps, pain during sex, painful periods, etc. It has also resulted in ovarian cysts and other problems. It just depends on the stage and where its located. Also, strangely, the severity of endometriosis is not really related to the pain. For example, someone can have pretty severe endometriosis and little or no pain, and in my case, the opposite, a fairly mild case with a lot of pain.

Post # 4
Member
121 posts
Blushing bee
  • Wedding: August 2012

I forgot to add that I found out I had it because I had severe pain caused by a large ovarian cyst. I went to the OB/GYN for an exam, they did an ultrasound, and surgery to remove it. Surgery (opening you up to look inside) is really the only definitive way to diagnose it from what I understand.

Post # 5
Member
1446 posts
Bumble bee
  • Wedding: May 2012

My dr suspects I have endometriosis but told me she couldn’t confirm it without surgery. I’ve had terrible periods and cramps since I was 15. The first day of my period feels awful… it’s like my ovaries are being twisted to the point where I can’t even breathe cause it’s so painful. I bleed really heavily and it lasts for about 10 days. I usually have 2 periods a month. It sucks. 

Post # 7
Member
121 posts
Blushing bee
  • Wedding: August 2012

It does suck. As my doctor told me “Its a terrible disease”. My advice, go to a doctor. If you have it, go to a specialist. I just found out this year, after another surgery, that I cannot have kids because of endometriosis. It sucks.

Post # 9
Member
1691 posts
Bumble bee
  • Wedding: December 2012

I have it – I have had a few laporoscopies to remove it – but it always grows back.

For me, it can feel like contractions, sometimes like cramps and other times like a searing burning pain low in my abdomen (around the uterus but not always that low since the tissue can grow anywhere).  Some positions sometimes hurt during sex, but not always.  It’s horrible really – wouldn’t wish it on anyone.  Sometimes i can go days or weeks without a lot of pain and other times it is extremely painful and very often.  THere have been times where I’ve had to pull over driving or spilled hot tea or coffee on myself because of the pain.  Once I ended up in the hospital because the pain was so intense I could not stand.  Turns out they’re pretty sure after all day at the hospital and ultrasounds, that it was a cyst that burst.  I also once bled for 39 days, it was EXTREMELY heavy (sometimes couldn’t leave the house, needed to be near a bathroom at all times) and I became slightly anemic.  I was pretty sure I had this at around 18, they didn’t believe that was it, told me I had IBS though my mom had endometriosis so I knew the symptoms.  It took me almost a year to get pregnant though I was 21 (i know it isn’t my ex, his new wife was pregnant within 3 weeks both times) and finally after I had my daughter they decided to go in and check around. ( I think I was around 23 when they found it for sure)

My uterus is now retroverted, most likely pulled down by the extra weight of the random growth of tissue on the back of the uterus 

Are you thinkin you may have endo Juliepants?

 

@turnertobe – I most likely cannot have children either – I think I was lucky I could when I  did, though it was a pretty long process.  I decided a few years ago that I would not try for another one. 

Post # 10
Member
90 posts
Worker bee

Endometriosis for me consists of an awful burning pain while having sex. Towards the end it feels somewhat better but not quite right. I’m lucky that SO is very understanding when it comes to this situation. I’ve had 4 laparoscopies in the last 2 years.

Post # 12
Member
1691 posts
Bumble bee
  • Wedding: December 2012

@Juliepants:  I don’t always have pain during sex, i think sometimes it just rubs the one spot where there could be endometriosis by some stroke of “UN” luck lol

The contraction like feelings do feel to me quite like a razor blade.  It’s a burning and cutting feeling inside.  I have described it before as a stabbing/cutting feeling as well.

 

Post # 13
Member
121 posts
Blushing bee
  • Wedding: August 2012

I don’t really have pain any more from sex. But I still get the random “razor blade” like pain in my abdomen quite often. Just last week, it was so bad it was all I could do to not curl up on the floor and cry. You should speak with a doctor. Find out one way or another. I ignored mine for years.

I’m a little older and I think mine has gotten a little better with age. The weird thing is, I’ve actually looked into having a hysterectomy and that won’t necessarily make it go away. Its more of a maintenance thing.

Post # 15
Member
10563 posts
Sugar Beekeeper
  • Wedding: January 2011

I’ve heard that almost all women will eventually develop at least a mild case of endometriosis (although it might not cause any issues).  It was just a doctor on tv though, so I have no link, sorry!

Post # 16
Member
3472 posts
Sugar bee
  • Wedding: July 2012 - The Gables Inn, Santa Rosa, CA

I’ve never really had pain during sex, but I’ll get it any time in the week before, after, or during my cycle (so basically any time really).  It pretty much feels like the worst 10 periods of your life, happening all at once… The pain is anywhere from high stomach, all throgh my pelvis/lower back, and into my rectum/tailbone area sometimes.  I take vicodin/norco for the pain because without it I literally can’t walk or even move without intense pain. 

I am on menstural suppression and have been for 5 years which helps, but my body still forces  2-3 cycles per year despite the therapy.  I was first disgnosed when I was 20 after they ruled out all other options, unfortunately surgery isn’t an option for me until I can prove that the endo is preventing me from having children (apparently life altering pain isn’t a good enough reason to need a medical treatment when the pain is in your lady bits).  The probelm is, I can’t prove that without ending my current treatment for a full year.  

They will often do a minorly invasive procedure to look at the tissue to see if they can see and affected tissue, and if possible might try to remove some of that tissue, this is called laproscopy. 

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