Ladies with Endo ..some questions

Hello Ladies,
I just got my date set for the hysto and I am so happy about it I could bust! That might sound strange to some of you, but I am 34, have had it with the pain and worry and am done having kids (have daughter, 14 and son, 10). So I am looking forward to some relief with a hysterectomy.

My questions I have are about endo and the pain/problems it can be causing me. I seem to have something else wrong with me and we (docs and I) arent quite sure how much the endo is adding to it so I thought maybe some ladies here can help out by hearing my symptoms.

I seem to have something majorly wrong with my sacrum and or coccyx. I have severe pain and swelling in the sacrum area of my back. Walking, sitting, standing all cause pain and swelling with sitting for more then 5 minutes being the worst ...cant even ride in the car for 10 minutes without needing pain meds :cry: Going to malls, movies, etc. is out of the question at this time and its depressing and frustrating. I have painful bowl movements that are comparable to labor pains, that are worse during my period but are also bad any time in my cycle. I have rectal pain and muscle aches most every day. Have extreme fatigue and feel sick to my stomach with no appitite. Painful intercourse anytime in my cycle. I also have a problem with excessive burping . I feel like Im gonna throw up most the time, but instead just burp a lot. People are shocked that such loud noises can come from one so small ...lol.

Im curious if any other women with endo have any of these problems, not just during their periods, but any time in their cycle. Im just afraid that even after the hysto, I might still have pain and problems that could be from something else. If theres any reassurance or advice you ladies can give, I'd really appreciate it

Kali

Hi Kali,

I'm and endo sufferer, I just turned 28 and am scheduled for June 11th for hyst with ovaries going to so they can't produce estrogen after hyst and cause endo to grow.

Bowel Movements, I feel like something is going to pop out the front of me and sometimes a knife is being stabbed up there (sorry to sound gross) Sometimes I feel like I have to breath through them! Anytime of month, Lots of pressure down there, makes you cry.

Gas, burping, I have IBS, which they believe will go away with endo and that they are related. Burp all the time, stomach swells up to 2" when bloated from it all. Burp when I'm hungry and when I'm full.

Dido on the intercouse, some positions no pain others, Oh my goodness, very painful!

My doctor told me I have a 90% chance of pain relief after hyst. Good odds!!!

I pee at night millions of times, endo has caused an adhesion to grow from my uterus to my bladder, they removed it last year and I didn't go pee at all at night after the lap surgery, now problems back and I'm sure they'll find its attached again, I have it on my bowel too.

Do you have endo on your bladder or bowel, maybe that is causing all the back pain.

You are not alone with these symptons, its an awful disease and causes great pain no matter what stage you are in the disease.

Are you keeping your ovaries? Are you taking HRT after they hyst?

I hope this gives you some reassurance,

Take care

I'm 30 and due to have LAVH July 15th. I was told I had endo May 12th. I had PID in 1996 and I think that was endo not PID. I've always had pain everywhere down there. I sware sometimes it feels like everything is going to fall out of me. I'm sure after a hysterectomy some pain has to go away. My overies will be gone due to the estrogen and I'm suppose to be put on HRT (patch). Guess really we'll just have to wait and see if our pain will end or at least be not as bad.

Thank you Abbie and Swatangel for your replies

Yep, I guess Im just gonna have to wait and see just how much the hysto does help. Its just frustrating cause I cant even walk or sit for more then 10 minutes w/o pain in my sacrum. My surgery isnt until July 19th ...a little over 6 weeks. I just have to be patient and make due till then. Thanks again so much and good luck to everyone.
I hope we all get great relief from this.



Kali
hehee, I just love smilies

I have suffered from endo since I was 16, though it was not diagnosed until I was 21. I have had 5 laparoscopies and 3 full laparotomies trying to get things under control. I have lost both tubes and my right ovary. The number of surgeries, the endo and my own body's tendency to scar severely has contributed to making a huge pile of adhesions inside of me, basically gumming everything up. They are calling it a frozen pelvis. I get absolutely terrible pains in my sacrum, back, pelvis, whatever the heck you wanna call it. Sitting is very painful and at times laying down is very painful. My doctor said it is the adhesions at the back of my uterus, very possibly attached to the bowel as well. I have this pain off and on all month, but it is MUCH worse a week before my period, during my period and a week afterwards.

I often get diarrhea at that time of the month, and sex is always very painful. I know lots of endo sufferers can relate to the things you are going through. It *****! s

Have you had any bowel studies done to rule out bowel involvement? If not, that might be a place to start.

Hang in there. Hopefully the hysterectomy will help with all of those problems. s

I have the 'gas' problem too (it was origanlly thought I had IBS) I think I have now had a camera in every orifice I own!
I have been told that it 'could' be from the fact that when a person is in pain they tend to gulp/swollow air, this then will build up and cause the gas problem. ok that one explination, but it the best oe I've ever heard.

I have the same type of BM problems you do too, they are most uncomfortable when it happens.
I have been told I have a 95% chance of getting rid of all my pain after surgery (even if I get rid of half of it I will have my life back)

I get back ache, leg ache, pelvic ache its engough to give you a headache lol. The sharp stabing pains that are above the pain med controls are the ones that get me the most as I never know when I'm going to get them & leave me doubled up & gasping in pain (there gose that gas build up again)
Yes, I can relate to what your going through.