(Closed) Ladies with Endometriosis: What does it feel like?

posted 8 years ago in Wellness
Post # 17
Member
248 posts
Helper bee
  • Wedding: October 2011

Mine started out as just a twinge of pain during sex along with heavy/very crampy periods and progressively got worse from there. Right before my surgery confirming it last year, the knife like stabbing pain was so bad that I was regularly doubling over, couldn’t talk, and crying during an episode. It also caused that same knife like pain while using the bathroom, during sex (which became nonexistent), use of tampons, and virtually during any form of exercise.

During my surgery they found adhesions connecting my bowel to my left fallopian tube and partially obstructing my bowel. Also found endo surrounding it and even more behind my uterus and bladder. It’s unknown how my fertility is affected since we won’t start ttc until later this year, but I am fearful to say the least.

Post-surgery I now get a cramping like feeling on one side quickly progressing to a dull or sometimes strong ache (generally on that same lower left pelvic area as my surgery was). Red meat, eggs, and other gas causing foods can trigger dull pain. Certain sex positions can still cause sharp stabbing pain. Pressure on my belly is a big trigger too so no bear hugs, tight jeans, etc. Oh and I get intense cramps if I can’t go pee when I feel like I have to. In summary; I am a mess internally lol.

I would recommend going to your doctor if you think you have it. It does not always show up on scans or ultrasounds just as a heads up too, mine didn’t. The only way a firm diagnosis can be made is via laparoscopic surgery so be firm with your doc if something doesn’t feel right. I had to see four different ones before someone believed me!

Post # 18
Member
2008 posts
Buzzing bee
  • Wedding: November 1999

This thread was great timing.

The last month or so I’ve been having incredible pain during sex.  We’ve been sexually active and monogamous for 10 years and all of a sudden I cannot take penetration.  

My periods have always been heavy and painful, and now with the sexual pain I’m concerned.

I apologize for the thread jack, but I want to mark my place to hear everyone’s thoughts.

Thank you for posting.

Post # 19
Member
906 posts
Busy bee
  • Wedding: October 2012

Hmm I’m curious about this topic too. Although I can admit that I tend to worry a lot. Okay the reason sometimes I think I have it is: 1. Sometimes certain positions during sex feel uncomfortable and sometimes a bit of pain, I’m not talking any crazy positions either. 2. Sometimes when I need to have a bowel movement I feel a dull ache and a bit of cramping before hand. Or right after I go like 5 mins. later I still feel pressure for a while even though I know I’m empty. 3. When I move sometimes I get a quick jab over my pelvis like I’m pulling something. Sometimes it gets me to gasp bc its a sharp pain.

Post # 20
Member
313 posts
Helper bee
  • Wedding: August 2012

My doctors suspect I have endometriosis but when I asked about a laparoscopy they said they wouldn’t do it… I am going to ask again down the road when I am not on depo anymore.

Anyway, the reason I got to talking about it with my doctor was because my cramps were becoming more and more severe.  I had had pretty painful cramps for a number of years but I noticed that they were quickly becoming debilitating.  Often I could not get out of bed and sometimes I would feel sick to my stomach.  At one point I found that it was extremely difficult for me to even get up and go to another room.  I was often in tears because of the pain.  It felt like nothing would help either.  I also was experiencing pain during ovulation, and pain during sex.  Now that I’m on the shot, I don’t have any of those problems anymore.  Unfortunately there does not seem to be any good long-term solution though, since depo is not healthy to be on for a number of years consecutively and it seems that even laparoscopies are not a one-time deal.

Post # 22
Member
187 posts
Blushing bee
  • Wedding: May 2012

I have incisional endo and it feels like being stabbed then having the knife twisted. It makes my eyes roll back. It can last from a second to a few minutes and is very random. I also have localized swelling that varies in severity during my cycle. I have refused any surgery since I am not in constant pain and I honestly can’t afford to pay for it or take time to recover. I tried the progesterone pills and they stopped the pain but made my periods insane, not worth it to me. 

I hope you don’t have it. Wouldn’t wish it on anyone. Best wishes.

Post # 23
Member
1360 posts
Bumble bee

Mine is really painful, heavy periods with lots of cramping, extremely painful sex at any time. There is a LOT of lower abdominal pain when I’m not on my period. I have very long periods, as well. One has lasted 13 days. Sometimes, my period will ‘disappear’ for 3-4 months and then return with such a vengeance that I literally feel like I’m dying. I can’t move, can’t breathe…and it has caused me to have to give up most physically strenuous activities. It feels like someone has taken a blowtorch and a chainsaw at the same time to my internal organs.

I haven’t had a single day that I can remember in that past 9-10 years that my stomach hasn’t been in severe pain. I used to cry and night and BEG for my stomach to just stop hurting for one day. One day is all I wanted. Well, failing that, I take medicine for the pain now and am planning on starting yoga (heard that helps). It is something that I would not wish on my worst enemy. Ever.

I really hope you are fine and everything goes well for you!

 

 

Post # 24
Member
804 posts
Busy bee
  • Wedding: February 2013

The week before my period is the only time the endo is “noticeable” for me because of the painful after-sex… too bad my period isn’t on a tight schedule or I wouldn’t notice at all because I wouldn’t be doing it! If I have sex during that time it’s fine during, but almost as soon as we’re done I get paralyzingly painful cramps in my uterus, ovaries and my lower back, sometimes bad enough to make me cry. (My doc asked me what the scale of pain from 1-10 was and I said 10.) I also feel like I am going to throw up, get diarrhea, or both. It only lasts about 5 minutes but it is always the longest five minutes of my life. Icy hot helps.

 

Post # 25
Member
1238 posts
Bumble bee
  • Wedding: March 2013

@Juliepants:  I have it, I got my first period at 11yrs old and it was agony right from the first one, I was bent over my desk at school then went to the toilet and cried.  I went to many many doctors over the years and they all fobbed me off, it took over 21 years to get diagnosed. i had surgery and it was better for a while but it is growing back.  I get bad cramps, get diarreah, get hot and flushed, I dont usually sweat at all but when i have my period I start to sweat, often because I know how bad the pain is going to be. If I dont have a bowel movement (which gives me a little reflief for a few minutes) I feel like vomiting.  The pain is across my stomach, sometimes I get cramps right inside my vagina, I get back pain on both sides (where my ovarys are).  I get a drawing down pain, my period is very heavy, I also have clotting.  I used to wear 2 super tampons at once as they would full up so fast.  I now use a moon/diva cup.  I use hotwater bottles to get relief, I try to rest and sleep when I am not working.  I also get massages.  I also have pain during sex, have felt a tearing/clicking movement a few times which is high up, and agony.  Usually the best time for me to have sex is after a few wines as I am more relaxed.  One reason why I dont want children (and may not be able to have them anyway because of endo & I am already 36) is I wouldnt want to pass this to a daughter.  If you are not gett ing good medical care form your Dr I suggest changing drs (I went to over 15 though)

Post # 26
Member
8 posts
Newbee
  • Wedding: October 2014

Hi Ladies, 

I know that many of you posted her a while ago, but this has been one of the more helpful, intelligent conversations I have found on endo, so I thought I’d post in the hopes that someone could relate to my experiences.  

I am on birth control pills now, which has helped suppress and regulate my pain a bit.  I am not certain that I have endo because I have never had the laparoscopy surgery, but these are my sypmtoms:  

-I have gone from having pretty heavy periods to almost no period these past 2 months. It only lasts a day and is very light, but I still feel my regular PMS and Menstrual cramps for an entire week or more (could be a side effect of the birth control, but I am worried that it might be retrograde menstruation?)

-After my period ends, I still have menstrual-like cramps, however they have a bit of a burning feeling, almost like a UTI.  They’re also constant and don’t go away for days–weeks at a time. The pain is dull but uncomfortable.  It can travel up my abdomin as well, and even just touching my skin can make me ache.

-I have slightly swollen gums every now and then (no pain or bleeding)

-sex does not hurt, typically

-every now and then I feel slightly nauseous, but not for long

-when i was not on the pill, I had dull pain all month long and I could REALLY feel myself ovulate–my burning cramps were very present and uncomfortable.

-My mom had endo and her ovary was under so much stress that it burst when she was 38.  However, she was told that she had endo because of a drug her mother was given when she pregnant with her, and NOT because of genetics???

Thanks for reading.  Would love to hear from anyone who has felt similar symptoms, or who knows more about retrograde menstruation or even Asherman’s Syndrome.  

Thanks Ladies!

 

Post # 27
Member
496 posts
Helper bee
  • Wedding: City, State

I have endometrioma of my left ovary. I’ve had two surgeries, one major removing cysts and benign tumors around my uterus and ovaries. Over a year ago I had a D&C and had a Mirena IUD put in. Six months later I was in the ER with a twisted ovary, I had laparoscopic surgery to “untwist it”. 

Since having the IUD my periods are much easier to deal with and cramping is pretty much gone. I never had pain during sex, so I feel lucky in that department. 

 

 

Post # 28
Member
155 posts
Blushing bee
  • Wedding: April 2014

View original reply
@bethbooth:  

View original reply
@Mimiz:  

Do you ladies have pain even when you’re not on your period ? I’ve always been so afraid of having something that could affect my fertility, i’m 22 so age isn’t a concern, but i know for a fact i want kids. I usually don’t have pain unless i’m on my period, sometimes i get very, very intense cramps. When i was in high school my dad would have to pick me up because my pain was so bad. It’s not like that every time though. I went to the gyno last month and got a pap smear and everything was normal. I want to go again and tell them specifically about my intense cramps. Do my symptoms sound like endo symptoms ? and even if were diagnosed with it, is there still hope i can have kids ?

 

My mom had an ovarian cyst removed a couple of months ago.., is this hereditary? 

 

Post # 29
Member
496 posts
Helper bee
  • Wedding: City, State

View original reply
@MrsC2014:  

 

I did have pain when I didn’t have my period. But since getting my IUD it’s decreased dramatically. As for fertility, I’m not an expert, a good question with your doctor. 

Post # 30
Member
8 posts
Newbee
  • Wedding: October 2014

View original reply
@MrsC2014:  I do have pain when not on my period. If I’m not on Birth Control I feel pain all month long.  As for fertility, I definitley think it’s a case by case situation–depends on where your endo is located… etc.  I’m no expert either; fertility is definitely one of my worries.  I’m 31.  

Post # 31
Member
155 posts
Blushing bee
  • Wedding: April 2014

View original reply
@Mimiz:  

View original reply
@bethbooth: 

thanks for replying. I’m going to the doc and getting checked out. 

The topic ‘Ladies with Endometriosis: What does it feel like?’ is closed to new replies.

Find Amazing Vendors