Angry & frustrated with endometriosis

by Greta
(WA)

I think I had endometriosis at a very young age, near the start of my periods. I was once diagnosed with poly-cystic ovaries as a teenager. A doctor trying to give a reason for my symptoms. However, I never had typical signs of that disease.

As the years went by my periods were always ruthless. Heavy with lots of clotting. I always dreaded my period and all that went with it.I believe that my mother had endometriosis also because she had the same type of periods(had a hysterectomy at 28!) and led me to believe they were supposed to be like that.

I know now she didn't know any better. As the decades went by I would have to call into work sick and I would sleep all day because of the symptoms. Sometimes this was near but not during my periods.

This increased and I got to a point where I was so tired of being predictably sick every month. I found out I had re-occuring Epstein barr virus. I think that was when my body was fighting all that was going on with the endometriosis and it would knock my immune system out.

At that time I didn't know what was going on as I hadn't been diagnosed with the endometriosis. My periods were so brutal, I couldn't take a shower and not get blood all over the bathroom floor. I was just getting sicker and sicker.

Then during a routine pap I found out I had ovary cysts and fibroids which led to my diagnosis of endometriosis and a laparoscopy surgery. The doctor removed the fibroids, cysts and endometriosis implants/lesions.

I was shocked when I saw the pictures! My organs were all bound together with scar tissue, no wonder I felt like something was ripping inside when I stood up. After the surgery I felt great for about 9 months. I got my energy back, was not consumed with pain, and was able to take off some weight that had accumulated due to all of the above!

Then the pain and all the endometriosis signs had returned. I then went back to my regular doctor and had a pelvic ultra sound and was diagnosed with more cysts and fibroids. The pain level was becoming unbearable once again and I was bleeding so heavy that it would take a full week to recover.

I always had signs that the Epstein virus was active EVERY time before and during my period (I know this was because my immune system was overworked) I would have a sore throat,swollen lympth nodes,a low fever, severe fatigue, achy and sore. I would sleep for 12-14 hours some days!

I would try to explain this all to my doctor especially the endometriosis and Epstein connection but she would just look at me blankly... She referred me back to an OBGYN that had diagnosed the endometriosis. I discussed the options with him and at the time I was considering the Mirena IUD, I had in the past had a bad reaction to progesterone so that was questionable.

He asked me to consider a hysterectomy. At the age of 42 with no children this was a very hard decision. Now I fully knew that a hysterectomy is not the cure for endometriosis and that it can come back even with removal of the ovaries.

Not wanting to have hormonal hell I asked him to keep the ovaries. From most of the research I've done,the endometriosis can come back either way. I did, however know that not having my uterus would get rid of the horrid periods and fibroids. So I opted for the hysterectomy.

I had a robotic hysterectomy, which helped to got back to work quicker but the pain after the surgery was horrible. They had a very hard time getting my pain level down to an acceptable level. I had planned on being away from work for one week since my sick leave balances were down to nothing and I was on advanced sick leave.

But I was so wiped out I had to stay out 2 weeks and work a couple of half days. At one point during my recovery at home I had an extremely painful night.I felt like I was picked up and my whole body was twisted in the middle. The pain was excruciating. I figured my body was adjusting or it was healing pain.

At my 6-week check up I was disturbed because I was still having symptoms that required pain killers and I felt I should be done with that. The doctor assured me that it was fairly normal. However, he also said that if it was the endometriosis acting up that he could shut down my ovaries to dry up the implants.

I am not at all interested in that form of treatment.I have read the horror stories about women that did that. It seems like very few had success with drugs such as Lupron. I look back at my first visit with this doctor and remember that was the first thing he wanted to do. He is a huge fan of Lupron for treatment.

Not only am I not interested because of all the side effects and going immediately into menopause, I simply do not have any time left to take off from work to deal with the complications that I am 99.9% sure are going to happen. So here I am again back to square one.

I have tried a lot of other things on my own such as trying to naturally lower my estrogen levels, diet changes, supplements, herbs,etc. I am now 3 months after my surgery and the symptoms in my pelvic area (where the doctor said he did remove endometriosis)is increasing. I'm tired of dealing with this,talking about it and having it impact my life!

Even people that love you get to a point where you know they don't want to hear it. My husband and I were pretty excited at the idea of no periods and less pain but I can see clearly the road I'm on and I know it will just get worse. I try to keep a good attitude and just go on.

I have a good job with good health insurance and benefits but it is fairly physical at times,lots of walking. I also work with nearly all men and that has challenges as well with this situation. My last male boss marked me down on my evaluation due to my sick leave use. He said he knew I had a health condition that caused the sick leave BUT he still marked me down. Although I told him it was illegal he kept me marked down. I did find out later that it is indeed frowned upon to mark employees down due to health conditions but I waited too late to have it removed from my evaluation.

I live in a pretty rural area, although there are larger communities and cities around, NONE of them have endometriosis specialists. I would have to drive 5 hours minimum to get to a specialist.

I am interested in Dr.David Redwine in Bend,OR since he claims if you are meticulous with endometriosis removal the re-occurrence is as low as 19%. From what I've read about him,he is thorough and will do a very long surgery if necessary for removal. I am a little frustrated with my last surgeon,I know he had a lot of surgeries the day of my hysterectomy and I feel he rushed through removing the endometriosis.

I know it is often hard to see and find and some claim invisible. This disease has definitely affected my credibility at work,I sometimes have a short temper with those close to me because of the constant symptoms, and over the years I've had to cancel going to social events a lot and that has hurt my friendships. I am fairly new to the area I live in (6yrs.)so I have not really developed any new friendships and don't really feel I have the time or energy most of the time.

My husband has been wonderful, we have only been married for 4 years, so far so good but I know its also been very challenging for him dealing with me and my emotions. I am tired of dealing with people that know nothing of this disease both personally and professionals, sometimes I feel like I have to educate everyone on it. And I'm sure they love that!

I really feel for you other ladies that are out there struggling with this. Seems that we have two choices - let it take over your life(sometimes this is not a choice) or keep going forward and hopefully find relief someday, somehow.