endometriosis after total hysterectomy :(

Have you discovered what was causing your pain? I have identical symptoms. I have had a colonoscopy, endonoscopy. And a CT. I have not gotten any closer to finding the cause. 

Have you found an answer to your pain in the last year?  I too am in your boat and recently had my uterus removed, but still feel no relief.

 

I'm 45 and had a total hysterectomy two months ago. Approximatlely 4 eeks post op I started experiencing the same kind of pain that resembled my old endometriosis symptoms.  Constant aching, frequently stabbin pain in right side, radiculating around side and through to back, horrible aching pain and my legs, exhausted, no appetite and sometimes a low-grade fever in the evenings.  I have not taken any HRT and am going through complete hell with hot flashes and on the rollercoasters of emotions.  My surgery said to hold off on HRT to stave of endo because it CAN come back.  When I had my hysterectomy, he had to remove some endometriosis from part of my bowel and bladder.   Of course the CT scan they took of me showed that nothing was wrong.  Endo doesn't show up on CT scans.  What is going on with us?

I'm 58 now, but had a total hysterectomy at age 30. I had all the same symptoms that a lot of you do. However, my Dr. did want me to be on a HRT. He started me out on Premarin. This particular HRT did not work for me. So he decided to put me on Estratest which at the time was a relatively new hormone replacement. From what I remember it has estrogen and testosterone in this HRT and as my doctor explained Women are born with both, so when you have a hysterectomy in some patients, it could be helpful if both are replaced. It was what I apparently needed because within two weeks I was feeling like a new person.  I was on this HRT for approximately eight years and then my doctor said it was time for me to discontinue. I hope this information will help somebody who's doctor approves HRT therapy. Please know that I am not recommending this particular medication as much as something that can just be discussed with your own personal doctor if this is the route that you and your doctor want to take. Please know that I am not a doctor or an expert on any HRT.  I just wanted to share this information of my own personal experience. I am not recommending medical advice. Good luck and I hope this helps somehow.  

Thank God for this site I'm sat up with the worst period pain ever and I had a full hysterectomy a yr ago at 29. It's not as bad as it was before as I was on morphine. I'm on high dose of codine and it's not helping. Got a doc app tomo and now I have evidence to back me up.

Hi in Veeee1, I would love to talk with you regarding life after having Endo and still having symptoms that over 20 or so years it's worst. Looking forward

Hi.. I have been looking for answers to my pain that keeps happening on the lower right side I had a hysterectomy 2 years ago.. And the only thing removed was my uterus since I was only 27 they gyno felt it would be best to keep everything else but seeing how once he went in to remove it the endo had formed webs all over the place like my stomach and bladder it was all fuzed together but still left everything in tacked so now after already having my appendix removed before any of this happening now when I get the the point I can't take the pain no longer I go to the doctor and they always tell me I have a virus it has been effecting my life style in so many ways like work and being able to take care of my children. Its as if I'm having my periods without the bleeding the bloating And pains in my stomach back and legs have gotten to the point I don't want to get out of bed and can last for days at a time but still they act as if its all in my head!! Thanks for sharing it makes me feel a little better knowing I'm not alone

Hi Ashley2005;

You are not alone. I had a partial hysterectomy a little over a year ago. Only my uterus was removed. It was an open removal, bikini cut. 2 weeks after the procedure I wound up in the ER because I had vomited and choked. They gave me a few breathing treatments and were about to send me on my way and I was more than ready to go home. Just as they were about to release me I developed a searing pain in my abdomen. It felt like someone was ripping my guts out and it came out of nowhere!!! They did a cat scan, but it was clear. Luckily the ER doc took my word that there was a serious problem. I was admitted and had exploratory surgery the next morning. They found massive amounts of scar tissue that was fusing all my organs together. I felt 100% better. I wish the story had ended there. After a few months I developed chronic abdominal pain and sever bowel issues. It was clear that the adhesions (scar tissue) had reformed. They do not show up on imaging, so the docs only had my word to go on and you know how hard it is to convince them there is an invisible problem. My family doc and OBGYN believed me, but couldn't convince any of the docs that were qualified to treat the problem. Adhesions are a paradoxical condition. They are caused by surgery, but can only be diagnosed and treated with surgery. There is no way of knowing how complicated the surgery will be until its done. There is also no way to predict the outcome. It could improve the problem or make it 100xs worse. I went through hell and back trying to get someone to help me. I was treated like a sissy, an attention seeker, a drug seeker, and so on. You name the situation I experienced it. I even found a surgeon qualified to treat my issue, but he flat out refused to perform the surgery. He even belittled me because my family doc and OBGYN were upset with his decision. I understand his reasons for refusal, but his approach was dispicable!! He told me that he was not comfortable with the risks involved with the surgery and he would not be bullied by me (via my docs) into changing his mind. That I should just go to pain management and deal with it!! I felt so helpless!!! I went through this for over a year. I had finally given up and accepted defeat. 3mos later (a little over a week ago) I developed such sever pain that I could barely walk. Of course my doc was on vacation. 3 Er trips and two visits to my doc's office, one with the nurse practioner and one with a doc I have known since I was a teenager (he was the one that knew I was not exaggerating my condition and told me he would see that I got help), later I was admitted to the hospital with diverticulitis (intestinal infection) and a partial bowel impaction. While I was there my OBGYN came to see me. He took a stand as well. He said that he had seen me suffer long enough and being denied help too many times. He told me that performing the surgery had become much more risky at that point, but it was just as risky not to do it. When he did the surgery he removed the adhesions that had reformed, but also discovered that I had developed severe endometriosis. Quite impressive since the #1 contributing factor for the disease to develop is having a uterus and I didn't have one and didn't have any signs of endometriosis when I had the previous two surgeries. It destroyed my ovaries and they had to be removed. I went out of my way to keep them for hormone production, because I hadn't reached menopause yet. I wasn't in a rush to start either!!! All of my abdominal organs suffered some degree of damage, with my kidneys being the second most damaged. In a perfect world, my damaged organs will heal and the story will end here. I'm not very hopeful though. I should not have had to be that sick before someone believed me or agreed to treat me. I'm not even that mad that most of the physical damage could have been avoided. I'm upset about all the psychological damage from the way I was treated, dismissed, spoken down to, viewed as a sissy, drug and/or attention seeker. There are a few doctors that treated me so badly that I want so bad to send them my surgical report just so they feel ashamed for their treatment of me, even if only for a minute. Just know that you are not alone and I hope you find that one doctor that will stand by your word, treat you with empathy, and find a solution for your suffering!!

I had a full hysterectomy 6 years ago when i was 30 for endometriosis. I am siting at present with my stomach looking as if im 6 months pregnant severe cramps and bleeding

Hi there Hun. I am so with you on this. I'm 53 yrs old now and had a total hysterectomy when I was 34 due to complications with endometriosis, polycystic ovaries, upside down backwards uterus, 3 tubal pregnancies and 21 unborn children ( includes twins and triplets, due to clomid, cause I ovalated many eggs with or without help from the pills. I wanted alot of children and ended up with 2 girls 😁

I had a total hysterectomy because of the complications due to endometriosis. HUGE blood clots, severe pain when ovulation and bleeding (the thought of moving was severe. I was incapacitated. I had pains in arms legs abdomen and even to breath, hurt. Doctor said get the surgery. My skin used to smell like roses and the same day of surgery and even now my son smells like plasticine. I hate it. I still have severe pain in my abdomen and both sides of my upper and lower torso. I have headaches, sweats,lazy foot syndrome, irritability, gas, ugly ugly incision with a Skin flap with any weight Gain. My abdomen swells up with pain all the time and then here comes the bad cramps. Just like I had before the surgery. Endometriosis pain. I miss my organs and want them back!!

At least my skin smelt better and I didn't have facial hair and nipple hairs like I get now that have to be plucked daily !!!!