Tired of being Sick

Today my frustration is very high. I am 38 years old, I have had problems with my period since the very 1st one which sent me to the hospital. I have had 2 surgeries to remove the endo. The 1st one they found my overies traped in my hip bones. The doctors have always told me any time I wanted to have a hysto to say the word and they would do it. But I was so young I was still holding on for hope. So I have suffered for years. I have always felt I would be less of a woman.

A couple of months ago I started having more and more pain with uncontrolable bowels. Over the past month the pain is worse, my breast hurt so much, my bowels feel like they are ripping out and lately the back pain is getting to the point of unbareable. My emotions are extremly high and I have no clue how to get a hold on the pain. (note: I dislike pain meds as I feel like I have no control)

I am scheduled for a Hysto on 09/27/10. Will all this stop after surgery? They are taking everything but the cervix.

Help!

(((Tytanya)))

I can so understand being sick and tired of being sick and tired! Been there, done that! Hence, I finally made my way to an endometriosis specialist so I could hopefully once and for all get rid of all of the endometriosis! That surgery was 2 1/2 years ago (a little over 7 years post hysterectomy) and so far so good!

I wish I could promise that you will be pain free following a hysterectomy, but I can't. The simple fact is a hysterectomy is not a cure for endometriosis. Many of us have a hysterectomy with surgeons who are unable to remove all of our endometriosis and thus we continue with symptoms even after our uterus is removed.

The key for treating endometriosis is the actual removal of the endometriosis implants. If any endo is left, it can keep causing us issues. The OB/GYN who did my first lap and my hysterectomy had to leave the endometriosis that was on my bowel walls. He didn't have the skills to safely remove it. Thus, I not only dealt with endometriosis pain and issues, I had a lot of bowel problems as well.

Since you have had surgery for endometriosis in the past, you probably know first hand that not having it all removed is a problem! Are you seeing an endometriosis specialist for your upcoming hysterectomy? They are the ones mostly likely to be able to remove all of the existing endometriosis and give us the best outcome.

If your biggest symptoms are related to the actual uterus, removing that organ could bring you relief. However, you are planning to keep a portion of it (the cervix is the neck of the uterus, not a separate organ) so it could depend on if the cervix causes issues as well.

Your sore breasts could be an estrogen dominance issue which many of us with endometriosis experience. Have you tried some natural progesterone cream to help with that problem? Are you on any birth control pills or progesterone/progestin or Lupron right now?

How you will feel following this surgery can also depend on what you do hormonally. If I understand your post correctly, you are having a bilateral oophorectomy. Will you be using HRT? If not, you may have issues with surgical menopause that could cause some of your emotional issues to continue as well as a whole range of new symptoms. If you do use HRT (not all doctors allow their endometriosis patients to use it since any estrogen could cause any remaining endo to thrive), it could take time to find the right balance so you will need to plan to have a lot of patients and perseverance and you need to ask about using progesterone along with any estrogen so that hopefully the progesterone can keep any remaining endo at bay.

I realize my post isn't exactly what you were hoping for. I wish I could honestly say you will never regret a hysterectomy and it will be the most wonderful thing you have ever done for yourself. But since I don't have a crystal ball that let's me see the future and my own personal experience was one complete with complications that compromised my health for years and did not solve my endo problems, I have to share realistically. I don't want any women to head into this major surgery without knowing the risks. I know what it is like to think all will go well and find out it didn't.

I can share with you that while my SIL also doesn't think her hysterectomy was the best thing that happened to her, she has done well since her TAH/BSO for endometriosis 18 years ago and she has even used HRT until recently.

I can't stress how important it is to have a second opinion, see a specialist (or if that is not possible at least someone who is not a practicing obstetrician but rather treats complex gynecological issues), and carefully weigh all of the pros and cons for you. None of us can guarantee all will go wonderfully for you but we will all be hoping it does!