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Endometriosis after complete hysterectomy Endometriosis after complete hysterectomy

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  #1  
Unread 10-09-2013, 01:45 PM
Unhappy - Endometriosis after complete hysterectomy Endometriosis after complete hysterectomy

Hello,

I had a complete hysterectomy (uterus, cervix & ovaries) in 2010. About a year ago I started to notice similar symptoms that I had with the endometriosis (constipation, stomach pain, back pain, painful intercourse). I went to a GI doctor and they did a colonoscopy and upper endoscopy and found everything to be normal. My gyn doctor thinks there may have been some endometriosis on other organs that they missed, so I have been referred on to another gyn dr that specializes in endometriosis. My appt is the end of this month.

I have no problems having another surgery but only if they feel this time they will have removed all of it.

Has this happened with anyone else?
  #2  
Unread 10-09-2013, 09:11 PM
Re: Endometriosis after complete hysterectomy

I'm actually worried I have endo on my right ovary after having a hysterectomy (uterus/left ovary removed). I have a sonogram tomorrow morning

Does your pain come and go? Is it super painful like before? Mine does feel like it but it's not as severe although yesterday it was. I haven't had ANY pain for months since March (obv after recovery) and now this pops up. Idk what to think.
  #3  
Unread 10-10-2013, 05:29 AM
Re: Endometriosis after complete hysterectomy

Hello. Polar28, I am curious, as I just recently had a total hysterectomy with ovary removal because of severe endometriosis. My Dr said I had to go without hormone for 6-8 weeks to let the endo die, as it feeds on hormones. Did you go on hormone immediately or wait? I hate to think I am going through all this and it may come back. Good luck to you! If it is endo, I hope they remove it all this time.
  #4  
Unread 10-10-2013, 08:29 AM
Re: Endometriosis after complete hysterectomy

Hello Jadechey,

They did put me on HRT the same day I had surgery. My doctor put me on Prempro and said that it shouldn't cause any problems and it didn't for about a year or so. I just went off HRT about 3 weeks ago but the doctor did tell me that if I have endo on other organs that got missed in my surgery then the endo could possibly come back. I am still very glad that I had my hysterectomy, for me it was the best thing I could have done.
  #5  
Unread 10-10-2013, 08:35 AM
Re: Endometriosis after complete hysterectomy

  Quote:
Originally Posted by Kelcortez View Post
I'm actually worried I have endo on my right ovary after having a hysterectomy (uterus/left ovary removed). I have a sonogram tomorrow morning

Does your pain come and go? Is it super painful like before? Mine does feel like it but it's not as severe although yesterday it was. I haven't had ANY pain for months since March (obv after recovery) and now this pops up. Idk what to think.
Hello Kelcortez,

I hope your sonogram goes well today.

My pain is always there but the degree of pain varies. Some days its not bad and other days it is like having really bad cramps and back pain all over again. For the first year or year and a half after my surgery, I didn't have any pain, so when it came back I wasn't sure what to think. I started the process all over with my gyn and then on to the GI doctor to make sure there wasn't something else going on. I am going to start a new way of eating to see if that doesn't help with some of it and try to exercise more, IDK if that will help or not but I figure it is worth a shot.

Good luck to you!!
  #6  
Unread 10-10-2013, 09:30 AM
Re: Endometriosis after complete hysterectomy

Hi Polar28.

I had a hysterectomy and we left 1/4 of an ovary 11 years ago. For about 3months I felt like a diseased organ had been removed. At the 4 month mark the pain came back as bad as ever. After much pleading with my ob gyn he agreed to go back in. At that time the endo was all over my bowel, bladder and pelvic cavity. My transverse colon had also adhered to the pelvic floor. Since then i have had pain every day. My primary md pit me on methadone and I still hurt. I cannot find a ob gyn to go back in to look. Some days pain is so bad I have to crawl to the bathroom. And forget about sex, when my husband and I do go there I can be down in bed for up to a week. so the long answer to yor question is yes, it does happen to others.
I hope your appointment goes well and they can come up with a fix for you.
  #7  
Unread 10-10-2013, 10:31 AM
Re: Endometriosis after complete hysterectomy

Complete hyst is not a cure for endo. Please read up and do some research for yourself. Knowledge is power!

I was just diagnosed with endo formally in a lap procedure on 9-30-13. As many women on here will tell you, if any endo is left it will grow. Endo feeds on Estrogen (natural or synthetic). Endo can even make it's own source of estrogen.

I am happy to see they are sending you to a specialist (this should have happened to begin with). Prepare yourself, if he is a good surgeon he will excise (cut out) the endo. Some say even this is not a cure for it.

I meet with my doc next week to talk about medications to suppress endo growth. I will be thinking of you, best of luck in your journey.

Hopefully one of the other sisters who is much more knowledgeable will be here soon to give you more info. It's a lot to take in all at once.
  #8  
Unread 10-10-2013, 06:01 PM
Re: Endometriosis after complete hysterectomy

Hi Polar 28, I'm so sorry to hear that your endo is back. That's the one thing all us endo sufferers don't want to hear. Yes, it is true, that even if you have a total hysterectomy with bilateral ovary removal, endo can return. Read Endometriosis after hysterectomy. Even with excision surgery done by a specialist, a small percentage of women still have a return of endo. Most endo specialists say they have a 90% or better success rate. Permanently avoiding estrogen is not an answer either because as (((StepanieB.))) pointed out, endo can make its own estrogen or it can use estrogen from fat cells. Also, living without estrogen can cause some serious problems all by itself including issues with bone, heart, mental, emotional, and sexual health. I have my that your endo specialist will be able to excise all your endo, and that will be the end of it for you. In the meantime, share you story with other women. Many are so anxious to get rid of the pain, they rush into surgery without doing research. You are living proof that when ob/gyns say get a hysterectomy for endo, they may be doing their patients a disservice. We are here to support you. I'm so sorry you are facing another surgery. Keep us posted.
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