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endometriosis after total hysterectomy :(

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neene
neene

hi everyone, i had a total hysterectomy in june 2010 due to endometriosis. i was put on climavil hrt patches after which caused headaches and pains and i was then changed to livial approx a year ago but for the last 2 to 3 months i have started to experience the abdom pains, back pains, leg aches, exhaustion, joint pains and bloating etc that i had before my hysterectomy. its not as bad but its still bad enough to cause problems to my everyday life and routine especially with my 4 year old daughter here. please could anyone recommend any other hrt or treatment for hysterectomy after endometriosis? i am now taking my cocodamol and voltoral tablets for the pain that i was on before my op!! thanks, nina.(aged 26, west sussex) sad

4 likes, 118 replies

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  • julie41531
    julie41531 neene

    Posted

    Has anyone experienced painful lower abdomindal cramping (on a scale of 1-10 - a 10!) when having a bowel movement after a full hysterctomy?  I have endometriosis and if felt like a bad leg cramp. I have had a few also in my diaphragm.  Could this be endo too?

     

    • AchingMary
      AchingMary julie41531

      Posted

      I have awful pains when trying to have bowel movements.  Had hysterectomy 5 weeks ago (still have ovaries).  I have terrible leg cramps, pains in my abdomen and feel like I'm carrying a 5 pound weight in my abdomen all the time. Quality of life has decreased since all of this started to happen to me.  

       

    • maria7800
      maria7800 julie41531

      Posted

      They found endo around my bowel and intestine when they performed the hysterectomy in 2004; I too have pain in passing stools (even when soft) and sometimes when it's just wind.  I also have pain in the pelvis when I go to the toilet (urine as well as stools)....haven't found anything to help to be honest - I have to use sudocrem often because I sometimes find the piles I have 'split'.....not pleasant at all...

  • AchingMary
    AchingMary neene

    Posted

    Hello,

    I am sorry for all of the trials you ladies have been having.  But, am feeling a little better reading your stories and knowing that I am not alone.  I am 38 and had a hysterectomy 5 weeks ago (ovaries left in).  I had really awful abdominal pains for three out of four weeks a month since I had my second child.  Three times in the last 1 1/2 years it hurt so bad I took myself to the ER.  I had exploratory surgery in February (which was suppse to be a surgery to remove my fallopian tube, but when they went in, there was nothing wrong with my fallopian tube). They found that my uterus was fused to my abdominal wall from scar tissue (adhesions) from the two c-sections I had having my children.  The only way to stop the adhesions was to apparently remove the uterus.  I went to two other 'second-opingions' before I had the surgery.  I thought, after this, I will be fine and can get my life back.  However, I just came from my 1 month follow up post-surgery appointment where I shared that I am still feeling this 'weight' and 'heaviness' in my abdomen and cramping.  It hurts to stand too long, walk too far, drive.  Leg pains in the night are awful, I change my pajamas at least once a night due to sweat and I have to take stool softeners everyday or I get awful stomach cramps when I try to go to the bathroom.  I never had bowel problems before.  

    I would love to know what others are doing for pain management.  Medications, herbal, rehabilitation, ANYTHING.  I have a 2 year old and a 3 year old and am a single mother.  Fortunately, I have the help of my parents because there are days I cannot even get out of bed because the pain is so bad.  But, my parents are almost 70 and children are tiresome for the best of us, let alone two people in their 70's.  I need to find a solution to all of this pain soon.  

    • skyemberr
      skyemberr AchingMary

      Posted

      I just had a full hysterectomy in a da Vinci machine on May 1, 2015. You would think I would be much better by now, but I am having major pain in the lower right quadrant of my pelvis. The pain sometimes goes down my leg, and I feel it in the bottom of my feet.

      I too am a stay at home mom with two girls ( 4 and 12) so I was really hoping the surgery would fix this pain. I *think* it is better than before but I am scared I will be still hurting in a year, especially since I read that fat can carry estrogen, which causes endo. I had it pretty bad. I currently have 20 incisions in my abdomen from surgeries to remove ovarian cysts and endo and scar tissue. I was afraid to get the hyst because I was only 43. I have a rare auto immune disease in my bladder that adds extra pain, and I did not want to aggravate that either, but the pain became unbearable.

      I am only starting my fourth week so I am not on any hrt, but I have had two trips to er for severe pain which turned out to be a hemangioma and bled.I think I am past that now.

      You asked about pain mgmt, and I do see a pain management doctor specifically to control pelvic pain, and shoulder pain too. I take Norco 10 mg twice a day. ( night only when my mother in law is not here to help)My mother in law is helping me in the short term with watching my girls, but I really don't want to be back to being curled in a ball unable to do much. It's really hard on all of us.

      Other than that I am sort of in the same boat with you. I don't know what my doctor will choose to do. I am not very fat, but I have enough on my tummy by the c section scars to store enough estrogen to restart the endo. The only advice I can offer is to tell you that ovaries cause endometriosis too, so maybe you want those out.

      I wish you peace and good health. Hopefully all of us will feel better soon!

  • coral2786
    coral2786 neene

    Posted

    A nurse i know had an hysterectomy and she takes sage capsules what she gets from holland and barretts she said they really help her
  • taneisha18476
    taneisha18476 neene

    Posted

    I am experiencing the same thing! I had my hysterectomy September 2014. I have one ovary and a couple of weeks ago the pain started again along with back pain, exhaustion, bloating and joint pain. I am also having constant sciatic pain. I'm glad I ran across this website. I'm sorry for your pain. I completely understand. I am 33 and have been dealing with the pain since the age of 26.
  • bellah
    bellah neene

    Posted

    Hi, I had a total hysterectomy due to severe endomitriosos in 1991. I had experienced the same symptoms since then without knowing why. I completely relate to you. Since I don't have ovaries I take Estradiol 1mg every day as estrogen replacement. I have seen many doctors for my body aches, specially back pain, I was even told I had Fibromyalgia but I think it's all a consequence of my total hysterectoy at the age of 28. I wasn't able to have children, so I suffer of severe depression as well. Ask for Estradiol to your gynecologist. It's very safe.

    I'm sorry for your surgery. Bellah

    • Guest
      Guest bellah

      Posted

      Did the estrodial help your pain? How many patches do you use a week?
  • aitarg35939
    aitarg35939 neene

    Posted

    Hi Neene and all the rest of the women here--

    I'm 61, had all parts reproductive removed when I was 27 due to endo. Yes I had similar pains occasionally for a long time after, tho of course none of the horrific menstrual cramps -- so I never ended up curled up on a cold floor letting the coolness overtake some of the pain sensations.

    I took decreasing doses of conjugated estrogens up until we saw the pathologist's report when a section of my colon was removed exactly 27 yrs later. We thought it was diverticulitis, but of course it was endo. That was a total shock, I had no idea that it could come back since the medical "wisdom" in '81 said it couldn't come back.

    I can't help about the meds, just let you know you're not alone. Best wishes,

    Aitarg

  • myouch
    myouch neene

    Posted

    So I had a complete hysterectomy in 1990, and I am now, in 2016, experiencing the same miserable symptoms that everybody here is describing (Bless your hearts)...my question is, did anyone else experience a sudden onset of these symptoms? I did! After all of these years, and yes I am using hrt...all of the sudden in the last 3-4 days, boom! Thought I had stained my back but the pain was not exactly rt for that...then started feeling crampy and bloated, and achey like pmsish...argh!
    • tracy85777
      tracy85777 myouch

      Posted

      Hi, just read your post & omg sounds just like what's happening to me at the moment. I had hysterectomy in 2002, after years of horrendous pain & bleeding for 3 out of 4 wks, they left ovaries due to only being 32. Only to have them removed 3 yrs later due to still bleeding & no reason/explanation for it. They found out I had endo when they went in to remove them & saw the mess inside. It was a relieve to have a reason for everything I had gone through & finally knew it wasn't just in my head.

      They put me on Hrt straight away due to my age & wanting to protect my bones!! However, ended up in hospital last week with suspected appendicitis. Severe pain in my right lower side, pain down my legs & constant trips to the loo with gripping pain. My consultant told me it looked like my endo had returned & they will check in two weeks on the pain & if no better to be referred to gynaecologist. I was pretty out of it last week but as I'm feeling a little bit better the signs have been there the last few months but just didn't think about it.

      My doctor just told me that endo never goes away & its nasty stuff that glues everything up. Thing is I asked if my Hrt could have had any effect on it & he said it can. Wish I'd been told this in the beginning I could have been prepared. He also said if I came of Hrt & went through the menopause it would stop it from reoccurring but after reading some of the posts I'm not sure what to think about that.

      Hope you can get some answers soon and it's such a relief to know it's not in my head again. Just wish they could find a permanent cure x

  • donna32797
    donna32797 neene

    Posted

    I know how you feel I first got endermetorios when I was 14 and I have had 37 surgeries, I stay in pain most of the time I also have back pain and was told it could get in your muscles and other places I was told if it wasn't caught in time it could get anywhere I am sorry you are going through this I wouldn't wish it on anyone I wish you all the best.
  • USfemail
    USfemail neene

    Posted

    First, I must say that it's nice to know I'm not crazy & I'm not alone. After finding out I had severe endometriosis, I had a complete hysterectomy over 5 yrs ago. I was told this was my only option, and even got a 2nd opinion. I was 35 at the time & couldn't conceive so I figured this was the best option to stop the pain. Months later, I was still having severe pain during sex. My Obgyn & urologist thought this was do to the bladder sling that was installed, so he said it would be best to remove it. (This later resulted in a class action lawsuit). Unfortunately, the removal didn't help & I continue to have severe pain during sex. I've tried injections, physical therapy, hrt...my Dr recently increased my premarin dosage from .625 to .9 mg. The therapist thinks it's a permanent muscle spasm as a result of the surgery. For nearly 2 yrs now, I've felt that familiar cramping again. It's gotten worse over the past few months, like severe menstrual cramps every day. I also experience issues with diarrhea & fatigue. I'm scheduled for another laparoscopy next week to see if endometriosis is still growing & affecting other organs. If this isn't the source of the pain, my next step is a colonoscopy. This whole ordeal has been so frustrating, exhausting, and depressing, to say the least. Praying for us all as we seek answers & a cure for this terrible disease.
  • virginia71781
    virginia71781 neene

    Posted

    So what are choices to fix this ,when you are in pain again and it's back?
    • Veeee1
      Veeee1 virginia71781

      Posted

      Hi my name is Veeee1, I would love to talk with you. I'm a 51 year old woman still living with symptoms of Endo after surgery. Looking forward to talk to someone who understands
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