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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

118 Replies

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  • julie78806
    julie78806 neene

    Posted

    I had endo and ovarian problems and had a complete hysterectomy 6 months ago. I started having pain again after 2 months. The doc thought I had scar tissue so did a lap surgery to remove. It was not scar tissue but new and active endo in my pelvis. So it can return even after complete hysto. I had started taking lowest dose estrogen but only for about 4 weeks before surgery and the pain began before that. My doc explained that fat cells can continue to produce estrogen without ovaries. It is not very common to have endo reoccur after complete hysto but it is possible. I'm going to doc tomorrow to discuss treatment options for the endo. It is very frustrating to have all the pain return. 
    • crapribs
      crapribs julie78806

      Posted

      You need a dual hrt  to minimise the chance of it coming back.
    • tarae
      tarae julie78806

      Posted

      sorry to hear about your pain but it sounds like everything i am going throug. i had 3 ectopic pregnancies of which two times my tube burst. i would find myself in onsets of pain like my tube had burst again however i was nt pregnant. after all ectopics being surgically removed and another lap surgery to try to find the cause and all types of test searching for the problem and endo they came back with nothing and now 7 yrs later i had a complete hysterectomy and was told after they removed my uterus they found endo attacking the back wall. my doctor then said that it was a good thing that i had the hysterectomy because they wouldve never found it if i didnt...of course because i rellay didnt want a hysterectomy at the age of 34....5 months later i am experiencing horrible hot flashes, ab pains,my legs are really painful trying to walk and climb stairs, and my stomach is so bloated i look 6 months pregnant. i can sit on the couch for a few hours and get up with swollen feet and legs....i am always in pain and uncomfortable and alot of times emotional and crying and just recently went back to visit my doctor who changed my meds to premarin 1.25 and it doesnt seem to help either and also referred to to do pelvic floor therapy and now reading this i am wondering if it is worth the try or is it endo just coming back and i need to see the surgeon again...

       

  • AliceInKansas
    AliceInKansas neene

    Posted

    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. 
  • sille16
    sille16 neene

    Posted

    Hi Neene.

    I too have had a hysteretomy after finding endo. I was 20 when my procedure was done. I am now 24. I recently started having the same pelvic pain, back pain, exhaution, bloating, etc. This causes problems in my life, work, kids, love and such. I have gone to many doctors and noone can find whats causing pain. I have not taken any meds since my surgry at all, I found the hormones they wanted me to take make my symtoms worse.

    I recentyly had another exploratory done to see if maybe endo was back or if the scar tissue was the culprit. I just recieved my results today, and the doctor said he found nothing wrong. evrything looks good. I am at a loss and loosing hope that ill ever figure out what is wrong. I just want to be a normal 24yo girl. If anyone comes up with anything please let us all know, I am at a loss.

    And thankyou for your posts, its good to know im not alone in my struggle.

    • Pinhaid123
      Pinhaid123 sille16

      Posted

      Hi sille16, I hear what you are saying!  I have been through much of the same and it is so frustrating when the docs tell you 'everything looks good, so everything must be good'- when it's not!  I have read several articles about many docs thinking endo may be an autoimmune disorder- which puts it in a whole new light and may explain some of the 'not finding anything' mantra that we seem to hear over and over and yet we know it's not in our heads. For many autoimmune disorders it's more a diagnosis of ruling everything else out... and then treating the symptoms, etc.  Try searching endo-autoimmune disorder and see what you can find. I've read about these docs but have not found any in my area yet.  Does anyone else have any further info on this angle?  Thanks and hang in there- there has to be something that will give us some relief....
    • tarae
      tarae Pinhaid123

      Posted

      I am sorry to hear what you are going through i believe that the most of us have most of the same issues..i went thru it for 9 1/2 yrs of the pain and no answers so my doctors came to the conclusion that it must b my female orgins they put me a s**t to put me in menopause to c how my pain would be everything did slow drastically so they decide that the best option for me was a hysterectomy and during my procedure they found endo attacking the back lining of my uterus which would have not been found if they hadnt removed it...my issue is that now i am beginning to have pains again..so now they suggested pelvic floor therapy...I HOPE IT WORKS
  • crapribs
    crapribs neene

    Posted

    Omg doing a hysterectomy  on someone as young?  That's awful! 
  • tasha49897
    tasha49897 neene

    Posted

    Hi Neene,

    I too suffer from endometriosis and I understand your pain; but I haven't had a hysterectomy; which I thought was the only solution to solving this never ending suffering.  I am so sorry you are still suffering. I am not 100% sure what else may be of help to your situation; but perhaps through conducting your own experiments; (this is what I am currently doing, to help heal myself)  I do believe that what you eat and how you live (stressful, complicated, over busy) does have some affect on our bodies. I am currently vegetarian and going to try fully raw as I was still eatting processed foods, which has many harmful additives to it, not to mention the additional hormones found in poultry, diary and meat products which is a good enough reason to become a vegetarian.  I am hoping going fully raw will help me to recover as nothing else has worked for me. I really do not think the doctors know any more than we do, which is almost nothing and that is why there is so much trial and error with everything that they do at the moment.  Some doctors say taking hormone supplements alieve the pain but others say that is only like putting a band aid on a cut and not a solution. All we can do is to try and carry out our own experiments because we know our bodies the best and we know what we put into it and how we live, the doctors only see a tiny piece of the puzzle; perhaps we can all help each other to finding a better solution than taking drugs, and surgery. I really am sorry you have had to have a hysterectomy and I send healing thoughts to you and everyone else suffering from pain from endo. Thank you for sharing!

  • gin33355
    gin33355 neene

    Posted

    Have Endometriosis since 19....discovered after pregnancy was eptopic. WARNING to young women choosing to exercise "rights" (read between lines) those clinics tell u pregnant urine test no ultra sound........imagine 12 wks eptopic with endometerosis with procedure.........

    If you have painful peperiods that are heavy cloty you probably have endo...sis  ! Simple like that! Further if u have a lot of ovulation mucus with you go ti gyn thinking (he cheated it got to be std so much ov mucus clear) you have bad endo ...sis...

    I've lived with Endometriosis since 1987! IIts 2014. The medical industry JUST now started studies on endo..sis.... 

    I've lost half of body s blood into ab cavity at 19 yrs old from chocolate cyst. They had laparoscopy back then...open me closed right back up had a room full of doctors who wondered how u was alive said looked like a bomb went OFF inside....could not tell organs apart too much blood...around lungs could not breath! Lost semester college in Hospital

    Total 8 surgeries 3 or 4 life threatenubg

  • gin33355
    gin33355 neene

    Posted

    Have Endometriosis since 19....discovered after pregnancy was eptopic. WARNING to young women choosing to exercise "rights" (read between lines) those clinics tell u pregnant urine test no ultra sound........imagine 12 wks eptopic with endometerosis with procedure.........

    If you have painful peperiods that are heavy cloty you probably have endo...sis  ! Simple like that! Further if u have a lot of ovulation mucus with you go ti gyn thinking (he cheated it got to be std so much ov mucus clear) you have bad endo ...sis...

    I've lived with Endometriosis since 1987! IIts 2014. The medical industry JUST now started studies on endo..sis.... 

    I've lost half of body s blood into ab cavity at 19 yrs old from chocolate cyst. They had laparoscopy back then...open me closed right back up had a room full of doctors who wondered how u was alive said looked like a bomb went OFF inside....could not tell organs apart too much blood...around lungs could not breath! Lost semester college in Hospital

    Total 8 surgeries 3 or 4 life threateded   total hysterectomy divinch surgery 2008....organs glued to pelvic bone.....my Body has.been freaking out Drs since 1987!  The mess this endo makes !  No children sad   

    I believe endometriosis is a AUTO IMMUNE DISEASE...since all out total hysterectomy 2008 and was 13.hrs divinch surgery...i have basically acquired MIXED DISCONECTIVE TISSUE DISEASE ...LUPUS INFLAMMATORY RHEUMATOID ARTHRITIS....BURSITIS....STROGENS ...THREE LOOPS OF DIVERTICULITUS AT SAME TIME  OH VERY IMPORTANT THEY SAW DIVER...WHEN INSIDE SURGERY BUT WITH WORST AND FLARE UP 3yrs after last surgery loop s WHERE HIDDEN FOR ONE YEAR SCAN AFTET SCAN NI SHOW DIVERTICULITIS WBC 3000 for past 6months doubled over UNTIL FINALLY THE LOOPS OF DIVERTICULITIS GOT SO BIG THEY RIPPED SCAR TISSUE ALLOWING SCANS TO SHOW PROBLEM.....HAT WAS SOOO MUCH  FUN .....BASICALLY THEY SEE MY MUSCLES RIPPING FROM STROGENS MMY GLUTUS MAX MUSCLES RIPPED IN HALF....ALL SINCE MY LAST SURGERY WHICH WAS 13 hours to remove all in hysterectomy with server endometriosis OH forgot to mention 1 tumor in neck rigjt aftet surgery that grew to INNUMERABLE TUMORS HEAD BRAIN TO FEET.......PET SCANS ON GOING BIOPS CANCER SCARES.. YEAH I'M COMPLETELY IN 1000 percent pain every single day of my life.

    There are no words....MY DOCTORS LITERALLY TELL ME THEY DON'T KNOW.HOW TO TREAT ME

    THERE ARE MANY CONNECTICUT 

    USA 

    • tasha49897
      tasha49897 gin33355

      Posted

      Hi Gin,

      I cannot give you a hug but here is a very big one SQUEEZZEEEE!

    • tasha49897
      tasha49897 gin33355

      Posted

      Sorry I wanted to write more and I pressed the reply button. Gin, for me morphine tablets help a bit with the pain but I am trying some personal experimentation with being a raw vegan or eatting as healthy as possible. Most of our food and drinks are all polluted with chemicals we cannot pronounce. I mentioned this experiment with my doctors and they said there is no evidence that your diet affects endo. Well you know what doctors I don't have much faith in anymore and to be honest I truely believe that all our medical problems have started since we had our first vaccination as children only to manifest into full blown diseases when we hit puberty. Please try to eliminate processed food and carbonated drinks (if you have this type of diet) and introduce more fruits and vegetables. Deep breathing exercises help a bit too with my pains I don't know what to suggest but anything to help your body heal itself is worth trying. Thanks for sharing your pain it helps us all and hopefully we can help each other to heal and know we are not alone with this horrible disease. Tasha
    • maria7800
      maria7800 tasha49897

      Posted

      Hi Tasha, I have to say when I went organic post-surgery I was generally ok; when we moved to Germany (hubby's in the army) and I couldn't find any organic food where we were, I reverted back to 'normal' food and found that my pain levels have increased and the weight has also been gained despite having lost almost nine stone post-surgery...! Something to be said for organic food clearly...!
  • maria7800
    maria7800 neene

    Posted

    Hi, I had both ovaries and a hysterectomy at 31 after numerous surgeries which were not successful other than alleviating the pain and removing endometriosis ("endo") at the time. I have to say, having undertaken significant reserach in this area, that in fact endometriosis is not only known to recur post-surgery (particularly if there was even a small amount left in) but can rengerate and produce estriadol (oestrogen) on its own. This has been found in numerous endo studies particularly in the US and contintental Europe. 

    Although I had about six or seven years without pain and lost all the weight that I had put on because of the disease, over the last five years the pain has returned and though not as bad as before, it's bad enough to affect mobility. Don't get me wrong, I do not regret my decision to have it and I knew at the time that it wasn't a cure as I was lucky to get very well informed and experienced doctors but I do get really angry when I hear GPs - even some gynaecologists such as the one I saw in Germany a couple of years ago - who believe once the hysterectomy is performed, there are no further problems.  I haven't taken HRT for over ten years - since having the uterus and ovaries removed - and my hormone levels are still relatively stable and only barely touching the lower end of the scale for those going through menopause. Get your GP or hospital to check your hormone levels as if there is endometriosis remaining (only likely to be found via a 3D MRI) then HRT itself may in fact be exacerbating the condition. I've today emailed the head of the Oxford Study on Endometriosis having joined it some years ago to ask for help and direction as like you I am a little lost as to what to do next. My personal (sex) life is a disaster as I've not been able to have intercourse with my husband for the last three years due to the pain - despite supposedly having much of this disease removed. Living in Dorset probably doesn't help because it's so rural..and access to major hospitals is not easy.

     

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